19AUG16 - The Nivolumab was not working too well for me so I'm now on Vinorelbine which, although described by some as chemotherapy is really a form of Genetic Treatment which encourages your own body and immune system to attack the cancer. I've had two sessions with Vinorelbine with very little side effects, just feel a bit tired the next day, great, it gets me out of a few household duties.
09APR16 - I've now had two treatments with the immunotherapy drug Nivolumab also known as Opdivo. It is delivered by drip the same way that an ordinary chemotherapy is delivered. I had no reaction or ill effects from the first infusion, by this I mean the slow injection of a substance into a vein or tissue. The second infusion was a different story, I had quite a different reaction to it. I had severe aches and pains on the right of my neck and right shoulder, it felt as if someone had given me several karate chops in that area. I also had similar pains on the right-hand side of my stomach. All these pains lasted for 3 to 4 days, subsiding slowly on the fourth day. The infusion had been given in the right-hand side of my chest where I have a portacath. I've had very good reports about Nivolumab so I will accept the reaction because I believe that it could be the most successful treatment for me. It has only been used for lung cancer in Australia for a few months but many patients world-wide have had considerable reductions in their tumours after just a few infusions.
Here's Wikipedias comments on a Portacath: In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
29MAR16 - As anticipated my chemotherapy has become ineffective so the Oncologist has now changed my medication. I had been on Alimta, although my tumours had remained the same size there were indications that the cancer was spreading on the inside surfaces of my lungs and other places. There are now a few new treatments that have had some very good reports with several patients having their tumours reduced in a very short time. One of these is Opdivo also known as nivolumab from Bristol-Myers Squibb. This has been successful with several types of cancer but has only recently been applied to lung cancer. Here is an article that describes Opdivo: PARADIGM SHIFT’ HAILED IN TREATMENT OF LUNG CANCER. This is not a chemotherapy, it uses a technique that allows the body's own immune system to attack the cancer. It is not for everyone but I am lucky enough to have just the right oncogene to allow it to work for me; this is ALK or to give it its full name Anaplastic Lymphona Kinase. Opdivo is given every two weeks and each dose costs $5,750, not bad for 200 mls of liquid, so glad that I took out health insurance many years ago even though, at the time, I never expected to need it. I should have some idea by about June 2016 if it is going to work for me.
17JAN16 - Happy New Year to everyone. A few days ago it was exactly six years since I was first diagnosed with Lung Cancer. I now seem to be very stable and feel that I'm returning to normal life expectancy. Normally any cancer medication seems to last just over a couple of years before the body resists it and the patient has to change to a different type of medication. I would expect this to happen with me and I might get the opportunity to try one of the newer medications that seem to be more effective for many people. Meanwhile we will keep enjoying ourselves with travel on cruise ships which is nice and easy for us.
08OCT15 - Had the usual chemo and pathology tests. All was fairly stable apart from my platelets which were quite low at 41, they should be 150 or more, these are the things that stop bleeding but I've had this on and off for a long time so can handle it.
18SEP15 - Chemotherapy today and all went well, even my haemoglobin had a slight increase and the rest of my levels were all within the expected ranges. A CT Scan from the previous week confirmed that the Chemo, 'Alimta Maintenance' was doing its job and holding the tumours steady with no change in size or spreading elsewhere. The plan is to stay on Alimta as long as possible then when we have to look for something else there might be more choices available.
27AUG15 - My 42nd session of Alimta Chemotherapy and all seemed to go well, after so many it does become a bit boring. Some blood levels were down a bit but they are not yet in the area where action needs to be taken. Before the next session I'll be having a CT Scan so will have some idea of the state of my tumours.
06AUG15 Chemo went well today, bit tired as usual after, usually takes 3-4 days to fully recover. The sessions today was the 41st treatment with Alimta, not many are able to go this far, on average they drop out after about 30 treatments. All this led to a discussion with my Oncologist about why some treatments suddenly stop working. If a patient has two types of cancer cells and one responds to the treatment and the other does not it means that the percentage of responding cells will decrease. This follows that the percentage of non-responding cells will increase and eventually dominate, when this happens it is time to look for another treatment. It's a pity that this happens with most cancer treatments, it is very rare for any patient to be totally cured and even if they are there is a chance that their cancer will return. There are a lot of promising treatments in the pipeline, many are still going through clinical trials. There are two main types at the moment, the ones that encourages the patient's immune system to attack the cancer cells and the targetted therapy which basically attacks cells that have a certain type of gene, the most common of these is probably EGFR (epidermal growth factor receptor), the targetted therapy blocks the receptor to prevent it feeding on the patient, eventually this process seems to become ineffective. I do not think that there will ever be an effective cure for any cancer that has gone past Stage 3A, mine is Stage 4. The best that we can hope for is the ability to treat it like a chronic disease. It wouldn't help me but it might be better to direct most of the research funds to early detection, certainly if cancer is detected in the early stages it can usually be cured.
16JUL15 Had chemo today and all went well. Blood test OK except for platelets which were down to about 54, have been far worse though. Still have breathlessness, seems like I'll just have to live with it.
11JUN15 Blood test readings were a bit down this time but they have been much lower in the past so no real problem. I have the results of the recent CT Scan, the tumours are about the same size which means that they are being contained which is what can be expected from the maintenance chemotherapy. I have been a bit more breathless than usual for a few weeks but this does seem to be slowly returning to normal, it may have been caused by "subpleural fibrotic changes in both lungs", something that i do not understand because it seems to be more related to pulmonary fibrosis, it is on my questions list for next time. I have "sclerotic foci" within the pelvis, these may have increased in size from 3mm to 4mm, this is one of those things that needs to be monitored over several CT Scans to get the full picture. Soon I'll be having some special treatment called 'a cruise in the South Pacific', this usually works wonders for my health, it's so good that I think Medicare should make a contribution.
21MAY15 Another good result from the blood test taken prior to today's chemotherapy, there is a 'however' though. It seems that good results can be an indication of an infection or a virus, these can cause the immune and blood system to work harder, it also does seem probable that I did have something. I am not the type of person who vomits and cannot remember when I last did so but it must be a bit more than 40 years. Shortly after the last chemo I did feel quite unwell, I'd had a lunch but did not feel like much in the evening so I just had a small banana. Within minutes I vomited all my lunch and the banana. I did feel a little better for getting rid of it but still not 100%. Later during the night I awoke with a pain in my stomach, after about 30 minutes it suddenly went and I then experienced the worst reflux that I have ever had, terrible burning and taste sensation. The good news is that in a short time I felt better than I'd been for a few weeks and this improvement continues; I'm not ready for a marathon yet but I think I'll be able to cope with our next holiday. I'll be having a CT Scan before the next chemo so will have an indication of my progress.
30APR15 Chemotherapy went well, quite tired after but usually OK in a few days. Blood test was really good with platelets around 114, highest they've been for many years, trying to figure out what I must have been doing right. In the past I had been taking Curcumin/peperine tablets daily, this is a complimentary medicine that has had some clinical trials which suggested that it is helpful. A few months ago when on holiday I paused it and forgot to restart until about six weeks ago, that may be what helped. A section of this blog gives details of curcumin.
09APR15 - Usual chemotherapy, pathology all quite stable and everything went well. Quite boring so I'll describe what goes on.
A couple of hours before I see the Oncologist I have a fairly comprehensive blood test and the results from this will be ready when I actually see the Oncologist.
A couple of years ago I had a Portacath inserted, this is a reservoir in my chest connected by a catheter to my right hand jugular vein; it makes blood tests and chemotherapy infusions much easier, saves a lot of time and plumbing.
My Oncologist will peruse the test results and confirm that I'm OK to have a dose of chemotherapy.
Chemo can have some nasty side effects so they also include an anti-nausea drug but this also has side effects, it makes one very tired and can cause reflux. To overcome the this I also have a supply of Metoclopramide which controls reflux but we still have the problem with tiredness, this is overcome with a sort of Pep-Pill called Dexmethsone, this overcomes tiredness but in turn causes insomnia. They gave me Temax for the insomnia but honestly it does not do much so every three weeks when I'm on Chemo I tend to be a bit if a Zombie for several days.
There are other longer term side effects. We all know about hair falling out when you are on Chemotherapy, this happens because the chemo usually works by attacking cancer cells as they divide, in fact it attacks all cells as they divide but cancer cells divide about five times as fast as any other cells so that is how it controls cancer but can do damage to other parts of the body. The hair follicles also divide quite fast, about 2-3 times faster so that is why some of us lose our hair. I do not lose too much but I have found that the grey hairs grow much faster than any that still have pigment, when I have a haircut my hair suddenly becomes darker for a few days. I also get severe dandruff, very thick large flakes. For a few days after chemo my face becomes very red and looks as if I've been out in the sun for far too long.
Hair follicles and nails work in very similar ways and we do tend to get some distortion in the way that our nails grow, it affects mainly my toe nails which tend to grow sideways so they need quite a lot of trimming to reduce discomfort. The only other side effect that I have is dry and sticky eyes, the usual eye drops do not work for me but I find that lots of flushing with warm water helps.
Anyway I can't complain too much. I'm now in my sixth year of cancer treatment and most of the other patients that I met at the beginning are no longer with us. My chances of achieving something close to normal life expectancy are improving all the time. All that I have done is what they told me to do, mainly a strict diet. Anyone with cancer must avoid added sugar, trans-fatty acids (junk food), alcohol and high G.I. foods, a bit of mild exercise every day always helps.
A good mental attitude is also useful, never give up, always make long term plans and remember that what the mind can imagine the body can achieve.
I also found that being involved with the local support group is very beneficial, apart from talking to each other we often meet experts who can give us updates on the latest developments. I also receive newsletters from cancer research groups all over the world.
05FEB15 - CT Scan and Pathology Results today along with the three weekly dose of chemotherapy, all went well but as usual I do feel a bit tired. The Scan and Pathology results were very steady with all the numbers about the same. Consistency is very useful at this stage.
15JAN15 - Had chemo today, everything went well with the blood tests being the best that I've had for about six months. I hope that these will be reflected in the CT Scan which is due early in February.
12JAN15 - It is now exactly five years, almost to the minute, since I was diagnosed with lung cancer. I'd been for a chest x-ray following a few bouts of of bronchitis. I'd been fasting so was on my way to get some breakfast when my mobile phone rang, the message was that they'd found a shadow on my lung and it shouldn't be there. I knew at that moment exactly what the situation was and it was all confirmed by many tests a week or two later. My chances of surviving five years were statistically between 5% and 8%, anyway I've made it and technically I'm a survivor. I believe that I now have a much greater chance of surviving to the ten year point but cannot find any statistics that consider the five year starting point.
22DEC14 - Blood tests and chemotherapy, all is well and normal but the new Infusion Room still has computer problems which makes things very slow. For three days around chemo I take Dexmethsone Tablets, these are a sort of pep pill to keep me going, problem is that they do it so well that I end up with insomnia for about a week, have tried a prescription sleeping tablet but it does not do anything for me. Dexmethsone came on the market about 70 years ago, if it were introduced today it would probably not pass the clinical trials because of the side effects that it causes.
06NOV14 - A very routine chemotherapy session and my first in the new $20Million Infusion Room, it has , of course lots of computers rather than the old manual system. Blood tests used to take ten minutes, now 55 minutes. When returning from seeing the Oncologist it would take a few minutes and I'd be having my chemo, today took 50 minutes. I think Computer People call it progress. Anyway all went well and the tests were satisfactory.
10OCT14 - Had a mole patrol or full body skin cancer check yesterday and all is well, no trace of any problem. Today I received a copy of the CT Scan report, the scan was taken two days ago. The good news is that my main tumour has been reduced by 11.2%, this is the third consecutive reduction so it is unlikely to be the result of measurement tolerances. I hope this progress continues, it is probably the result of the Alimta chemotherapy, I like to think that our participation in the 5:2 diet, following a good diet in general and doing everything that I'm supposed to do has also helped to bring a good result. Although the tumour has reduced it has not made any difference to my shortage of breath nor will it ever do so. Once a tumour has destroyed lung cells they never recover, what we need now is success from the stem cell and similar research, this would enable new cells to be grown, this could take ten to twenty years before they come up with a solution. I have chemotherapy next week, it will be interesting to see if my improved blood levels are maintained.
I can see stats for the people who read this blog, here are the figures for the last thirty days:
For several months China has been top of the list but USA has just pushed them off. The figures for Australia have always been relatively low.
24SEP14 - First chemo and tests after our recent holiday. First thing the Oncologist looked at the pathology reports and said "Cruising seems to do you good". I had been a bit worried because the food on ships is not the highest standard, it is greasy and often badly cooked. We found that many desserts had far too much sugar and the water on board had a funny taste from the chemicals that they use when they make it from sea water. Anyway my platelets, the things that make your blood clot and prevent internal bleeding, had been very much down for several years but have now risen from 40% to 82% of normal. Similarly my white cells and neutrophils have also more than doubled, a good sign that my immune system is improving. This could be the result of the Alimta Maintenance Chemotherapy beginning to kick in; I've been on it for 81 weeks so the timing is about right, it varies from one person to another. I've also recently been on antibiotics for a bug that I caught on the ship, many other passengers had the same thing. I'm due for another CT Scan in a couple of weeks but I would not expect any improvement to show up yet.
28AUG14 - This is getting boring, treatment went well and all tests indicated that everything is stable, hope it keeps up this way.
17JUL14 - Chemotherapy today and as usual everything including the pathology was stable. This interesting thing was a conversation with the Oncologist about developments in cancer treatment. I'm on maintenance treatment, there is no cure at the moment for lung cancer, for the time being it has to be treated like any other chronic disease. When my original chemotherapy was not successful I was prescribed Tarceva targetted Therapy and this was successful for 31 months as a maintenance treatment. The immune system will eventually resist any form of treatment, I was lucky to get so long from Tarceva, the average seems to be less than 18 months. My treatment is now Alimta Maintenance and eventually it will become ineffective. The Oncologist did explain that at the moment there are three main areas of research all coupled to gene therapy which works the same way as Tarceva but these are targetted at other genes. At the moment clinical trials are being carried out by several pharmaceutical companies and the results seem to be quite promising, even if successful though government approval will be needed and this can be slow. We do hope though that when my Alimta Treatment ceases to be effective one of the new treatments will be available and approved.
26JUN14 - Had chemo-therapy today, all went well and my pathology tests were all quite stable. We've had workmen around the home and I had to quite bit of preparation, just the simple things that they don't like involving hard work and getting ones hands dirty, anyway I was quite surprised, it was hard work and after I felt quite tired but once I had recovered I felt better than ever. Once the work is all complete I'll be busy again restoring a few things, quite looking forward to it. I've pencilled in the lawns for next week.
03JUN14 - Just received the results of last week's CT Scan. On the previous scan the main tumour had shrunk by about 9%. CTs are difficult to measure, the amount of breath in the lungs or even the number of heartbeats can make a difference to the measurements, so can many other factors. The best thing to do is to follow the trends over several CT Scans which I have every three to four months. I had hoped for another reduction but instead there has been a 1% increase in the size of the main tumour, however, the trend between the two scans seems to be generally stable. The next scan will be in September or October, I'll be looking forward to it.
I have also received the result of my test for the IGF1 hormone. When this figure is low it puts the body into repair rather than replicate mode, fixing cell problems is much better than replicating faulty cells. When first measured my IGF1 was 24, next it dropped to 21 and this time it was 17 which is in the area that I was hoping for but I would like to see it go down to about 6 which would put me well into the repair mode area, might be able to achieve this in another 12 months. The reduction was achieved by the 5:2 diet which is described in other pages on this blog here.
03APR14 - Chemo today and all went very well. The best part was probably the Pathology, most of my important blood levels are constant but the best is my CEA or tumour indicator which has now dropped to 2.9, just hope that it is reflected in next month's CT Scan.
13MAR14 - Had my last chemo and all went well, pathology tests all normal as usual, this stage of the treatment seems to be going well. 13th not maybe the best day for treatment but I'm not superstitious (touch wood).
20FEB14 - Time flies, I've just had my 17th session of Alimta Chemotherapy, that just one week short of twelve months since I changed to this medication. My blood levels were all normal and there were no problems with the treatment.
24JAN14 - Just received a copy of the report for the CT-Scan that was carried out last Monday. It is difficult to get an accurate measurement of tumours, bit like dealing with jelly on a wobbling plate, even a heartbeat can affect the measurement but the measurements indicate a reduction in tumour size of around 9%. If we get a similar reduction at the next scan in three months it will confirm that the 5:2 diet is beneficial. My IGF-1 has dropped from 24 on the first day of the 5:2 diet down to 21 on the same day that the CT-Scan was taken; I had hoped for a much bigger reduction but it is in the right direction, I'd like it to be around 6.
09JAN11 - Chemotherapy session went well and the pathology tests were good. My CEA is down to 3.0, it was 4.8 when I started on the 5:2 diet. A low CEA does not guarantee a reduction in tumour size but often those two things do go together. I'll know more just after the 20th January when I have my next CT-Scan.
19DEC13 - Had a chemotherapy session and all seems to have gone well. The pathology levels were as expected and fairly stable. Have not got the CEA result yet, this takes a bit longer, I may not collect it until after the holidays.
24NOV13 - I've now been on the 5:2 for about four months and the results are very pleasing so I thought an update might be useful.
Being a lung cancer patient and it is essential that I keep my protein levels up to avoid getting cancer cachexia. Cachexia puts you off eating, you lose weight and eventually just sort of fade away, it may happened to at least two people in our local support group, there are also a few others who may have had it but have also gone now. What I have tried to do is to achieve a balance between calorie reduction and maintaining my protein levels.
My normal weight for many years was around 75kgs, would have liked to have got it down to about 70kgs because that would have given me a perfect BMI. Last year I was hospitalised for pneumonia and whilst there I caught Pseudomonas aeruginosa which caused my weight to drop to 60kgs in about two weeks. They stabilised my condition and I was discharged from hospital, all hospitals are dangerous places. I'd been maintaining my weight with Sustagen Protein Supplement, I used to take took ten scoops each day. When I started on the 5:2 diet I still needed to take the same amount of protein, that is 70 scoops per week so now on the 5 days of the diet I take 14 scoops each day then none on the 2 calorie reduction days. It seems to work for me, I'm still getting the benefits of the 2 calorie reduction days. I have very comprehensive pathology tests every three weeks when I go in for chemotherapy. During the last few years many of my blood levels have been wrong, too much or too little on many measurements, I also have myelodysplasia. Since going on the diet my haemoglobin has increased from 70 up to 110, my platelets have gone from 50 up to above 100 and more importantly my CEA which is a tumour activity indicator has dropped from 7.8 to 4.1, this might mean that my tumours have dropped in size but I will not know for sure until my next CT Scan towards the end of January. Many other blood levels have also moved, either up or down, to more normal levels, most are not yet perfect but they are heading in the right direction. A few weeks ago arrangements had been made for me to have blood transfusions, cross matching had been done but then the latest blood test indicated that I no longer needed them; I believe it was the 5:2 diet that enabled me to avoid the blood transfusions but a bit more monitoring over the next three months or so may confirm this.
Fasting for health reasons is not something new, it has been around for hundreds of years but can be severe to some people and full fasts of more than three days need to be medically supervised. The 5:2 diet is a real good balance, it is long enough to reduce the EGF-1 but not too long to cause any other medical problems. Since being on it I have been feeling so much better. According to the literature fasting will not help chronic diseases like cancer, it is most effective with the autoimmune diseases and there are at least 200 of them. I believe that I'm feeling better because it is curing a few minor things for me that I didn't realise that I had and this has taken the pressure off my body so that it can get on and deal with the cancer.
I'm thoroughly enjoying the 5:2 diet, gives me a feeling of peace and calm with improvements in my medical condition. With the right equipment and careful planning it is possible to have very satisfying meals.
23NOV13 - Chemo again, very routine now without any problems. Pathology tests still very promising, just about all my levels have improved including the important CEA or tumour indicator, this only reduced by one decimal point this time but it along with all the other levels are still heading in the right direction. I've now been on this chemo for about six months, it did not seem to do much in the first three months, I then started on the 5:2 diet and since I've been feeling much better with the tests also indicating that everything is improving. Just waiting now for my next CT Scan towards the end of January which I hope will confirm that my tumours are shrinking.
02NOV13 - Had chemotherapy a couple of days ago, all went well. Because of my very low haemoglobin at the previous chemo, preparations had been made for me to have a blood transfusion but this turned out to be unnecessary because it had shot up to well over 100, above where transfusions are necessary. I got the detailed pathology report yesterday and this also had more good news, quite a significant drop in my CEA or tumour indicator, hopefully it does mean that the size of my tumour has been reduced, this may be due to the 5:2 diet which I've now been on for about twelve weeks. This diet of reduced calories on two consecutive days changes the body from replicate to repair mode where it fixes genetic problems in the cells, the new cells can then overcome many medical problems such as diabetes, high cholesterol and even cancer. Some people go on the 5:2 diet for a specific problem but find that they feel much better in many other ways, seems that they've cured problems that they were not aware of. I should have a better idea of what is going on when I have my next CT Scan which will probably be in January; it could be sooner but my Oncologist prefers to reduce the amount of radiation that I receive, I think that is a good idea.
10OCT13 - Had chemotherapy today. Some blood levels were a bit low particularly the haemoglobin at 78, normal starts at 140. I'll definitely need a blood transfusion in the next few weeks but we are hoping to delay it as much as possible until about the second or third week in November, it will then cover a brief holiday that we are hoping to take. Next week we will take a very short trip down to Mount Annan Botanical Gardens where they are celebrating their 25th anniversary and have some special events on, we hope to have three nights in a local hotel, nice rest whilst someone else does the cooking etc.
19SEP13 - Routine chemotherapy with blood tests. All went went and results of tests are as anticipated.
15SEP13 - I've just come across this link to the original TV program on the 5:2 diet. Don't forget it is a diet for health reasons, not to lose weight although some people end up doing both. I eat more protein on the five days to maintain my weight, I'm just aiming to reduce my IGF-1 on the other two days to put my body into repair mode.
The Original TV Program on the 5:2 diet
Here is another link that explains the 5:2 diet in 6½ minutes:
A short video on what the 5:2 diet does.
09SEP13 - The second week of the 5:2 diet went well, a bit of hunger on the first morning but it soon passed. I'd had a blood test a couple of weeks ago, have only just received the IGF-1 part of it because we'd been away on a short holiday. It was quite a shock really, on the metric scale it was 24 or 180 on the old Imperial one. 24 is right at the top of the range and if it has been like this for any length of time it could account for my susceptibility to cancer, I've been producing skin cancers for a long time and have had Myelodysplasia which is related to cancer. With such a high reading my body would have been replicating faulty genes/cells at high speed. I now really need to get my IGF-1 down to 4 on the metric or 30 on the Imperial, this will switch my body from replicate to repair and hopefully my body will sort out the defective genes/cells. The good thing is that I now know about this problem and there does seem to be a reasonable way of dealing with it, I'm not expecting any miracles but a slight reduction of the tumour size would be welcome.
30AUG13 - First day of the 5:2 diet. No breakfast, this is my lunch, there will be a light evening meal of one veg-burger and half of a small banana, total 600 calories for the day.
The following is the evening meal, a lentil veg-burger with a poached egg, I also managed to squeeze in a full banana, it's in food-wrap because I had to weigh it without the skin. On the day I used up 598.4 calories of my daily allowance of 600 calories.
I normally eat around 2,400 calories each day. Today was not difficult to handle, I did feel a bit hungry about 30 minutes after eating lunch but this soon passed.
29AUG13 - Visit to Oncologist today followed by Chemotherapy. Studied all the tests including the CT Scan, the main tumour has increased by 2 mm on two dimensions but these are notoriously difficult to measure, hopefully the next reading in nine weeks time may be nearer to the original dimensions or even lower. My blood and other tests indicate that it will be safe for me to start the 5:2 diet which aims at reducing my IGF-1 hormone to put it into repair mode resulting in some of my faulty cells that cause cancer being fixed, I'm not expecting any miracles just hoping for a bit of a nudge reducing the tumours by one or two percent.
14AUG13 - today I collected the comprehensive version of the blood test that I had last week just before chemotherapy. It is generally good, the CEA (CarcinoEmbryonic Antigen), or tumour marker is for the first time, since I was diagnosed, within the recommended range. My cholesterol is disgustingly healthy, my haemoglobin and platelets, although just below the range, are the highest they have been for years. Mt next CT Scan will be on the 26th August, results usually take about five days. I hope to start on the 5:2 diet on the 31st August, this hopefully will reduce my growth hormone IGF-1 to the level where it goes into repair mode rather than replication, repair mode might sort out some of the genes that encourage my cancer. I'm hoping for a 2% to 5% reduction in the size of the tumours. My next CT Scan will then be towards the end of October.
09AUG13 - Had Chemo yesterday, blood levels were about my average and I did not have any problems with the treatment. My next CT Scan has been arranged for the 26th August 2013, if all is well I hope to start the 5:2 diet the following weekend, hopefully I will be one of those people whose growth hormone IGF-1 will be reduced to the point where it goes into repair mode helping to control my cancer. The first CT Scan after nine weeks on the diet will be towards the end of October, should get some idea from it if the 5:2 is working.
17JUL13 - Comments on the BBC Horizon TV program "Eat, Fast and live longer" produced and narrated by Michael Mosley. This program also described the 5:2 diet where you eat anything that you like for five days then have two days of reduced calories, 500 for ladies and 600 for men. Those numbers seem to be just enough to suppress hunger pains and the craving for food.
My wife has high cholesterol and I have lung cancer which has recently spread to my ribs, spine, sternum and most lymph nodes so I now have nothing to lose by trying the 5:2 diet.
My wife had had her cholesterol problem for many years she was just above the maximum recommended level. She had followed a strict diet with exercise, we are both vegetarians, she had also been prescribed statins but these made her very ill and she had to stop. We saw the program and have looked at many websites about the 5:2 diet. My wife started first about six weeks ago. The first thing she had done was a test of her cholesterol level and her IGF-1. After five weeks of the diet these tests were repeated and the results were amazing, on the scales used here her cholesterol had dropped by 0.9 which brought her down to a very acceptable level, just in the lower half of the recommended level.
I was not able to go onto the 5:2 diet right away, my weight was far too low and I was concerned about catching cancer cachexia. About a year ago I had a serious lung infection which resulted in me losing a bit over 10 kgs in about three weeks, it has taken me a year of force feeding myself with food supplements to get my weight back to a safe level. My understanding is that with a high IGF-1 level replication of cells takes place including reproducing the defective ones with all their faults, when the IGF-1 level is reduced to the lower part of the range replication of cells is replaced with repair of existing cells, hopefully this process might reduce the number of cancer promoting cells that I have.
My next CT Scan is in about three weeks, on the same day I will have a blood test of my IGF-1. I will also join my wife on the 5:2 diet. The five days will be Monday to Friday and the weekends will be the reduced calorie days. About 9-10 weeks later I'll be due for another CT Scan and again on the same day I'll have a test of my IGF-1. Between the start and finish reference points there should be a good indication of how effective the 5:2 diet is for me. Hopefully on the 5 part of the diet I'll be able to maintain my weight. 20JUL13 - Saw my oncologist a couple of days ago, we counted the days and found that it is a bit too early for another CT Scan so this will not happen until the end of August, hopefully I'll know if this 5:2 diet works for me by the beginning of November.
It seems that the term IGF-1 for Insulin Like Growth Factor was coined in the 1930s or maybe earlier, I wonder if with today's knowledge they might have given it another name. When some people read or hear Insulin Like they lose interest unless they are diabetics. None diabetics tend to miss the fact that this diet could be useful to them.
I hope that in about ten weeks I'll be reporting on the beneficial effects of the 5:2 diet in my fight against lung cancer.
27JUN13 - I had chemo today, no ill effects so far, blood test was good, haemoglobin up from 61 to 112 and CEA (cancer indicators), reduced by four points and I feel real good. Probably have a CT Scan after the next session in three weeks. Following the previous chemotherapy I had to have a two unit blood transfusion, this is because I also have myelodysplasia which results in a deficiency of red cells among other things. Following the recent blood tests it has become apparent that I will probably need blood transfusions at the rate of one unit per three weeks but these may be given in greater doses less often.
08JUN13 - Had been feeling real good since my last chemo-therapy, the Alimta seemed to be working well with no side effects, my weight had finally reached my target so I was quite surprised to find the blood test indicating a serious drop in some levels. My haemoglobin was down to 61, the normal range starts at about 140. I have a rare blood group, they could not give me a transfusion so I had to return the next day. Yesterday they had a successful cross-match and I received two units, about one pint. I'm still feeling quite well and although the transfusion was necessary I do not feel any different from it. The only thing that concerns me is that when I was last on chemo-therapy three years ago the same thing happened and it had to be stopped, I was then put on Targeted Therapy tablets, these stopped working about three months ago so I returned to another form of chemo, the worry is now that I may not be able to continue with the Alimta chemo-therapy and at the moment there is no real alternative.
16MAY13 - Received the results of my CT Scan today, all seems to be well, the measurements of all tumours are stable, which is not bad at all after just three chemo sessions, prior to that they had been growing. The next CT scan will be taken after four more chemo sessions, that will be in about twelve weeks.
01MAY13 - MY GENETIC TESTING RESULTS
Way back in January 2013 I signed up with https://www.23andme.com/ to have my Genome tested, the cost was US$99 + about US$150 for the DHL Courier. The test involved spitting into a test tube and sending it to California. Sadly the first test did not work but they sent me another kit at no cost and this time it did work. The firm 23andme was set up by the wife of the founder of Google, she had her own funds to do this.
Generally there were no nasty surprises, I haven't got all the results yet, some are still being processed by the computer but what I've got are very informative. I now have it confirmed that I cannot handle alcohol, always knew that, a moderate amount of coffee is good for me. I am susceptible to cancer but I knew that and I have disgustingly healthy genes for cholesterol including the good one, these are confirmed by my regular blood tests. I have little chance of developing Alzheimers, other forms of Demetia, Parkinson's or Macular Degeneration. I have a natural immunity to Norovirus and a few other related Gastro problems. In one case I have two genes related to Hepatitis B, one fights it the other makes me susceptible, in this case though I have had regular doses of the vaccine since it became available about 15 years ago. I do not have all the results yet, the computer is still working on them and they will be added to my database as they become available. I'm particularly interested in my ancestral make-up, it seems that many people are quite surprised by this one which can detect origins over several thousands of years.
Generally I'm very pleased with the results which when I've figured out how, I will download to a spreadsheet and pass on the information to my doctors, they are all interested and it will give them valuable information on any treatment that may be necessary for me.
06APR13 - The chemo on the 4th April13 seems to have gone OK with few side effects this time probably because I was better prepared with several tablets and injections in advance. I seem to have regained my appetite and I do not feel as tired as last time. The next test of the progress will be towards the end of May when I will have another CT Scan. The Portacath certainly made the chemotherapy process and the taking of blood samples much easier, just one slight silent yelp as the needle was inserted then I sat back and relaxed with a cup of tea as the process continued; it is also much quicker and easier for the nurses.
09APR16 - I've now had two treatments with the immunotherapy drug Nivolumab also known as Opdivo. It is delivered by drip the same way that an ordinary chemotherapy is delivered. I had no reaction or ill effects from the first infusion, by this I mean the slow injection of a substance into a vein or tissue. The second infusion was a different story, I had quite a different reaction to it. I had severe aches and pains on the right of my neck and right shoulder, it felt as if someone had given me several karate chops in that area. I also had similar pains on the right-hand side of my stomach. All these pains lasted for 3 to 4 days, subsiding slowly on the fourth day. The infusion had been given in the right-hand side of my chest where I have a portacath. I've had very good reports about Nivolumab so I will accept the reaction because I believe that it could be the most successful treatment for me. It has only been used for lung cancer in Australia for a few months but many patients world-wide have had considerable reductions in their tumours after just a few infusions.
Here's Wikipedias comments on a Portacath: In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
29MAR16 - As anticipated my chemotherapy has become ineffective so the Oncologist has now changed my medication. I had been on Alimta, although my tumours had remained the same size there were indications that the cancer was spreading on the inside surfaces of my lungs and other places. There are now a few new treatments that have had some very good reports with several patients having their tumours reduced in a very short time. One of these is Opdivo also known as nivolumab from Bristol-Myers Squibb. This has been successful with several types of cancer but has only recently been applied to lung cancer. Here is an article that describes Opdivo: PARADIGM SHIFT’ HAILED IN TREATMENT OF LUNG CANCER. This is not a chemotherapy, it uses a technique that allows the body's own immune system to attack the cancer. It is not for everyone but I am lucky enough to have just the right oncogene to allow it to work for me; this is ALK or to give it its full name Anaplastic Lymphona Kinase. Opdivo is given every two weeks and each dose costs $5,750, not bad for 200 mls of liquid, so glad that I took out health insurance many years ago even though, at the time, I never expected to need it. I should have some idea by about June 2016 if it is going to work for me.
17JAN16 - Happy New Year to everyone. A few days ago it was exactly six years since I was first diagnosed with Lung Cancer. I now seem to be very stable and feel that I'm returning to normal life expectancy. Normally any cancer medication seems to last just over a couple of years before the body resists it and the patient has to change to a different type of medication. I would expect this to happen with me and I might get the opportunity to try one of the newer medications that seem to be more effective for many people. Meanwhile we will keep enjoying ourselves with travel on cruise ships which is nice and easy for us.
08OCT15 - Had the usual chemo and pathology tests. All was fairly stable apart from my platelets which were quite low at 41, they should be 150 or more, these are the things that stop bleeding but I've had this on and off for a long time so can handle it.
18SEP15 - Chemotherapy today and all went well, even my haemoglobin had a slight increase and the rest of my levels were all within the expected ranges. A CT Scan from the previous week confirmed that the Chemo, 'Alimta Maintenance' was doing its job and holding the tumours steady with no change in size or spreading elsewhere. The plan is to stay on Alimta as long as possible then when we have to look for something else there might be more choices available.
27AUG15 - My 42nd session of Alimta Chemotherapy and all seemed to go well, after so many it does become a bit boring. Some blood levels were down a bit but they are not yet in the area where action needs to be taken. Before the next session I'll be having a CT Scan so will have some idea of the state of my tumours.
06AUG15 Chemo went well today, bit tired as usual after, usually takes 3-4 days to fully recover. The sessions today was the 41st treatment with Alimta, not many are able to go this far, on average they drop out after about 30 treatments. All this led to a discussion with my Oncologist about why some treatments suddenly stop working. If a patient has two types of cancer cells and one responds to the treatment and the other does not it means that the percentage of responding cells will decrease. This follows that the percentage of non-responding cells will increase and eventually dominate, when this happens it is time to look for another treatment. It's a pity that this happens with most cancer treatments, it is very rare for any patient to be totally cured and even if they are there is a chance that their cancer will return. There are a lot of promising treatments in the pipeline, many are still going through clinical trials. There are two main types at the moment, the ones that encourages the patient's immune system to attack the cancer cells and the targetted therapy which basically attacks cells that have a certain type of gene, the most common of these is probably EGFR (epidermal growth factor receptor), the targetted therapy blocks the receptor to prevent it feeding on the patient, eventually this process seems to become ineffective. I do not think that there will ever be an effective cure for any cancer that has gone past Stage 3A, mine is Stage 4. The best that we can hope for is the ability to treat it like a chronic disease. It wouldn't help me but it might be better to direct most of the research funds to early detection, certainly if cancer is detected in the early stages it can usually be cured.
16JUL15 Had chemo today and all went well. Blood test OK except for platelets which were down to about 54, have been far worse though. Still have breathlessness, seems like I'll just have to live with it.
11JUN15 Blood test readings were a bit down this time but they have been much lower in the past so no real problem. I have the results of the recent CT Scan, the tumours are about the same size which means that they are being contained which is what can be expected from the maintenance chemotherapy. I have been a bit more breathless than usual for a few weeks but this does seem to be slowly returning to normal, it may have been caused by "subpleural fibrotic changes in both lungs", something that i do not understand because it seems to be more related to pulmonary fibrosis, it is on my questions list for next time. I have "sclerotic foci" within the pelvis, these may have increased in size from 3mm to 4mm, this is one of those things that needs to be monitored over several CT Scans to get the full picture. Soon I'll be having some special treatment called 'a cruise in the South Pacific', this usually works wonders for my health, it's so good that I think Medicare should make a contribution.
21MAY15 Another good result from the blood test taken prior to today's chemotherapy, there is a 'however' though. It seems that good results can be an indication of an infection or a virus, these can cause the immune and blood system to work harder, it also does seem probable that I did have something. I am not the type of person who vomits and cannot remember when I last did so but it must be a bit more than 40 years. Shortly after the last chemo I did feel quite unwell, I'd had a lunch but did not feel like much in the evening so I just had a small banana. Within minutes I vomited all my lunch and the banana. I did feel a little better for getting rid of it but still not 100%. Later during the night I awoke with a pain in my stomach, after about 30 minutes it suddenly went and I then experienced the worst reflux that I have ever had, terrible burning and taste sensation. The good news is that in a short time I felt better than I'd been for a few weeks and this improvement continues; I'm not ready for a marathon yet but I think I'll be able to cope with our next holiday. I'll be having a CT Scan before the next chemo so will have an indication of my progress.
30APR15 Chemotherapy went well, quite tired after but usually OK in a few days. Blood test was really good with platelets around 114, highest they've been for many years, trying to figure out what I must have been doing right. In the past I had been taking Curcumin/peperine tablets daily, this is a complimentary medicine that has had some clinical trials which suggested that it is helpful. A few months ago when on holiday I paused it and forgot to restart until about six weeks ago, that may be what helped. A section of this blog gives details of curcumin.
09APR15 - Usual chemotherapy, pathology all quite stable and everything went well. Quite boring so I'll describe what goes on.
A couple of hours before I see the Oncologist I have a fairly comprehensive blood test and the results from this will be ready when I actually see the Oncologist.
A couple of years ago I had a Portacath inserted, this is a reservoir in my chest connected by a catheter to my right hand jugular vein; it makes blood tests and chemotherapy infusions much easier, saves a lot of time and plumbing.
My Oncologist will peruse the test results and confirm that I'm OK to have a dose of chemotherapy.
Chemo can have some nasty side effects so they also include an anti-nausea drug but this also has side effects, it makes one very tired and can cause reflux. To overcome the this I also have a supply of Metoclopramide which controls reflux but we still have the problem with tiredness, this is overcome with a sort of Pep-Pill called Dexmethsone, this overcomes tiredness but in turn causes insomnia. They gave me Temax for the insomnia but honestly it does not do much so every three weeks when I'm on Chemo I tend to be a bit if a Zombie for several days.
There are other longer term side effects. We all know about hair falling out when you are on Chemotherapy, this happens because the chemo usually works by attacking cancer cells as they divide, in fact it attacks all cells as they divide but cancer cells divide about five times as fast as any other cells so that is how it controls cancer but can do damage to other parts of the body. The hair follicles also divide quite fast, about 2-3 times faster so that is why some of us lose our hair. I do not lose too much but I have found that the grey hairs grow much faster than any that still have pigment, when I have a haircut my hair suddenly becomes darker for a few days. I also get severe dandruff, very thick large flakes. For a few days after chemo my face becomes very red and looks as if I've been out in the sun for far too long.
Hair follicles and nails work in very similar ways and we do tend to get some distortion in the way that our nails grow, it affects mainly my toe nails which tend to grow sideways so they need quite a lot of trimming to reduce discomfort. The only other side effect that I have is dry and sticky eyes, the usual eye drops do not work for me but I find that lots of flushing with warm water helps.
Anyway I can't complain too much. I'm now in my sixth year of cancer treatment and most of the other patients that I met at the beginning are no longer with us. My chances of achieving something close to normal life expectancy are improving all the time. All that I have done is what they told me to do, mainly a strict diet. Anyone with cancer must avoid added sugar, trans-fatty acids (junk food), alcohol and high G.I. foods, a bit of mild exercise every day always helps.
A good mental attitude is also useful, never give up, always make long term plans and remember that what the mind can imagine the body can achieve.
I also found that being involved with the local support group is very beneficial, apart from talking to each other we often meet experts who can give us updates on the latest developments. I also receive newsletters from cancer research groups all over the world.
05FEB15 - CT Scan and Pathology Results today along with the three weekly dose of chemotherapy, all went well but as usual I do feel a bit tired. The Scan and Pathology results were very steady with all the numbers about the same. Consistency is very useful at this stage.
15JAN15 - Had chemo today, everything went well with the blood tests being the best that I've had for about six months. I hope that these will be reflected in the CT Scan which is due early in February.
12JAN15 - It is now exactly five years, almost to the minute, since I was diagnosed with lung cancer. I'd been for a chest x-ray following a few bouts of of bronchitis. I'd been fasting so was on my way to get some breakfast when my mobile phone rang, the message was that they'd found a shadow on my lung and it shouldn't be there. I knew at that moment exactly what the situation was and it was all confirmed by many tests a week or two later. My chances of surviving five years were statistically between 5% and 8%, anyway I've made it and technically I'm a survivor. I believe that I now have a much greater chance of surviving to the ten year point but cannot find any statistics that consider the five year starting point.
22DEC14 - Blood tests and chemotherapy, all is well and normal but the new Infusion Room still has computer problems which makes things very slow. For three days around chemo I take Dexmethsone Tablets, these are a sort of pep pill to keep me going, problem is that they do it so well that I end up with insomnia for about a week, have tried a prescription sleeping tablet but it does not do anything for me. Dexmethsone came on the market about 70 years ago, if it were introduced today it would probably not pass the clinical trials because of the side effects that it causes.
06NOV14 - A very routine chemotherapy session and my first in the new $20Million Infusion Room, it has , of course lots of computers rather than the old manual system. Blood tests used to take ten minutes, now 55 minutes. When returning from seeing the Oncologist it would take a few minutes and I'd be having my chemo, today took 50 minutes. I think Computer People call it progress. Anyway all went well and the tests were satisfactory.
10OCT14 - Had a mole patrol or full body skin cancer check yesterday and all is well, no trace of any problem. Today I received a copy of the CT Scan report, the scan was taken two days ago. The good news is that my main tumour has been reduced by 11.2%, this is the third consecutive reduction so it is unlikely to be the result of measurement tolerances. I hope this progress continues, it is probably the result of the Alimta chemotherapy, I like to think that our participation in the 5:2 diet, following a good diet in general and doing everything that I'm supposed to do has also helped to bring a good result. Although the tumour has reduced it has not made any difference to my shortage of breath nor will it ever do so. Once a tumour has destroyed lung cells they never recover, what we need now is success from the stem cell and similar research, this would enable new cells to be grown, this could take ten to twenty years before they come up with a solution. I have chemotherapy next week, it will be interesting to see if my improved blood levels are maintained.
I can see stats for the people who read this blog, here are the figures for the last thirty days:
For several months China has been top of the list but USA has just pushed them off. The figures for Australia have always been relatively low.
24SEP14 - First chemo and tests after our recent holiday. First thing the Oncologist looked at the pathology reports and said "Cruising seems to do you good". I had been a bit worried because the food on ships is not the highest standard, it is greasy and often badly cooked. We found that many desserts had far too much sugar and the water on board had a funny taste from the chemicals that they use when they make it from sea water. Anyway my platelets, the things that make your blood clot and prevent internal bleeding, had been very much down for several years but have now risen from 40% to 82% of normal. Similarly my white cells and neutrophils have also more than doubled, a good sign that my immune system is improving. This could be the result of the Alimta Maintenance Chemotherapy beginning to kick in; I've been on it for 81 weeks so the timing is about right, it varies from one person to another. I've also recently been on antibiotics for a bug that I caught on the ship, many other passengers had the same thing. I'm due for another CT Scan in a couple of weeks but I would not expect any improvement to show up yet.
28AUG14 - This is getting boring, treatment went well and all tests indicated that everything is stable, hope it keeps up this way.
17JUL14 - Chemotherapy today and as usual everything including the pathology was stable. This interesting thing was a conversation with the Oncologist about developments in cancer treatment. I'm on maintenance treatment, there is no cure at the moment for lung cancer, for the time being it has to be treated like any other chronic disease. When my original chemotherapy was not successful I was prescribed Tarceva targetted Therapy and this was successful for 31 months as a maintenance treatment. The immune system will eventually resist any form of treatment, I was lucky to get so long from Tarceva, the average seems to be less than 18 months. My treatment is now Alimta Maintenance and eventually it will become ineffective. The Oncologist did explain that at the moment there are three main areas of research all coupled to gene therapy which works the same way as Tarceva but these are targetted at other genes. At the moment clinical trials are being carried out by several pharmaceutical companies and the results seem to be quite promising, even if successful though government approval will be needed and this can be slow. We do hope though that when my Alimta Treatment ceases to be effective one of the new treatments will be available and approved.
26JUN14 - Had chemo-therapy today, all went well and my pathology tests were all quite stable. We've had workmen around the home and I had to quite bit of preparation, just the simple things that they don't like involving hard work and getting ones hands dirty, anyway I was quite surprised, it was hard work and after I felt quite tired but once I had recovered I felt better than ever. Once the work is all complete I'll be busy again restoring a few things, quite looking forward to it. I've pencilled in the lawns for next week.
03JUN14 - Just received the results of last week's CT Scan. On the previous scan the main tumour had shrunk by about 9%. CTs are difficult to measure, the amount of breath in the lungs or even the number of heartbeats can make a difference to the measurements, so can many other factors. The best thing to do is to follow the trends over several CT Scans which I have every three to four months. I had hoped for another reduction but instead there has been a 1% increase in the size of the main tumour, however, the trend between the two scans seems to be generally stable. The next scan will be in September or October, I'll be looking forward to it.
I have also received the result of my test for the IGF1 hormone. When this figure is low it puts the body into repair rather than replicate mode, fixing cell problems is much better than replicating faulty cells. When first measured my IGF1 was 24, next it dropped to 21 and this time it was 17 which is in the area that I was hoping for but I would like to see it go down to about 6 which would put me well into the repair mode area, might be able to achieve this in another 12 months. The reduction was achieved by the 5:2 diet which is described in other pages on this blog here.
03APR14 - Chemo today and all went very well. The best part was probably the Pathology, most of my important blood levels are constant but the best is my CEA or tumour indicator which has now dropped to 2.9, just hope that it is reflected in next month's CT Scan.
13MAR14 - Had my last chemo and all went well, pathology tests all normal as usual, this stage of the treatment seems to be going well. 13th not maybe the best day for treatment but I'm not superstitious (touch wood).
20FEB14 - Time flies, I've just had my 17th session of Alimta Chemotherapy, that just one week short of twelve months since I changed to this medication. My blood levels were all normal and there were no problems with the treatment.
24JAN14 - Just received a copy of the report for the CT-Scan that was carried out last Monday. It is difficult to get an accurate measurement of tumours, bit like dealing with jelly on a wobbling plate, even a heartbeat can affect the measurement but the measurements indicate a reduction in tumour size of around 9%. If we get a similar reduction at the next scan in three months it will confirm that the 5:2 diet is beneficial. My IGF-1 has dropped from 24 on the first day of the 5:2 diet down to 21 on the same day that the CT-Scan was taken; I had hoped for a much bigger reduction but it is in the right direction, I'd like it to be around 6.
09JAN11 - Chemotherapy session went well and the pathology tests were good. My CEA is down to 3.0, it was 4.8 when I started on the 5:2 diet. A low CEA does not guarantee a reduction in tumour size but often those two things do go together. I'll know more just after the 20th January when I have my next CT-Scan.
19DEC13 - Had a chemotherapy session and all seems to have gone well. The pathology levels were as expected and fairly stable. Have not got the CEA result yet, this takes a bit longer, I may not collect it until after the holidays.
24NOV13 - I've now been on the 5:2 for about four months and the results are very pleasing so I thought an update might be useful.
Being a lung cancer patient and it is essential that I keep my protein levels up to avoid getting cancer cachexia. Cachexia puts you off eating, you lose weight and eventually just sort of fade away, it may happened to at least two people in our local support group, there are also a few others who may have had it but have also gone now. What I have tried to do is to achieve a balance between calorie reduction and maintaining my protein levels.
My normal weight for many years was around 75kgs, would have liked to have got it down to about 70kgs because that would have given me a perfect BMI. Last year I was hospitalised for pneumonia and whilst there I caught Pseudomonas aeruginosa which caused my weight to drop to 60kgs in about two weeks. They stabilised my condition and I was discharged from hospital, all hospitals are dangerous places. I'd been maintaining my weight with Sustagen Protein Supplement, I used to take took ten scoops each day. When I started on the 5:2 diet I still needed to take the same amount of protein, that is 70 scoops per week so now on the 5 days of the diet I take 14 scoops each day then none on the 2 calorie reduction days. It seems to work for me, I'm still getting the benefits of the 2 calorie reduction days. I have very comprehensive pathology tests every three weeks when I go in for chemotherapy. During the last few years many of my blood levels have been wrong, too much or too little on many measurements, I also have myelodysplasia. Since going on the diet my haemoglobin has increased from 70 up to 110, my platelets have gone from 50 up to above 100 and more importantly my CEA which is a tumour activity indicator has dropped from 7.8 to 4.1, this might mean that my tumours have dropped in size but I will not know for sure until my next CT Scan towards the end of January. Many other blood levels have also moved, either up or down, to more normal levels, most are not yet perfect but they are heading in the right direction. A few weeks ago arrangements had been made for me to have blood transfusions, cross matching had been done but then the latest blood test indicated that I no longer needed them; I believe it was the 5:2 diet that enabled me to avoid the blood transfusions but a bit more monitoring over the next three months or so may confirm this.
Fasting for health reasons is not something new, it has been around for hundreds of years but can be severe to some people and full fasts of more than three days need to be medically supervised. The 5:2 diet is a real good balance, it is long enough to reduce the EGF-1 but not too long to cause any other medical problems. Since being on it I have been feeling so much better. According to the literature fasting will not help chronic diseases like cancer, it is most effective with the autoimmune diseases and there are at least 200 of them. I believe that I'm feeling better because it is curing a few minor things for me that I didn't realise that I had and this has taken the pressure off my body so that it can get on and deal with the cancer.
I'm thoroughly enjoying the 5:2 diet, gives me a feeling of peace and calm with improvements in my medical condition. With the right equipment and careful planning it is possible to have very satisfying meals.
23NOV13 - Chemo again, very routine now without any problems. Pathology tests still very promising, just about all my levels have improved including the important CEA or tumour indicator, this only reduced by one decimal point this time but it along with all the other levels are still heading in the right direction. I've now been on this chemo for about six months, it did not seem to do much in the first three months, I then started on the 5:2 diet and since I've been feeling much better with the tests also indicating that everything is improving. Just waiting now for my next CT Scan towards the end of January which I hope will confirm that my tumours are shrinking.
02NOV13 - Had chemotherapy a couple of days ago, all went well. Because of my very low haemoglobin at the previous chemo, preparations had been made for me to have a blood transfusion but this turned out to be unnecessary because it had shot up to well over 100, above where transfusions are necessary. I got the detailed pathology report yesterday and this also had more good news, quite a significant drop in my CEA or tumour indicator, hopefully it does mean that the size of my tumour has been reduced, this may be due to the 5:2 diet which I've now been on for about twelve weeks. This diet of reduced calories on two consecutive days changes the body from replicate to repair mode where it fixes genetic problems in the cells, the new cells can then overcome many medical problems such as diabetes, high cholesterol and even cancer. Some people go on the 5:2 diet for a specific problem but find that they feel much better in many other ways, seems that they've cured problems that they were not aware of. I should have a better idea of what is going on when I have my next CT Scan which will probably be in January; it could be sooner but my Oncologist prefers to reduce the amount of radiation that I receive, I think that is a good idea.
10OCT13 - Had chemotherapy today. Some blood levels were a bit low particularly the haemoglobin at 78, normal starts at 140. I'll definitely need a blood transfusion in the next few weeks but we are hoping to delay it as much as possible until about the second or third week in November, it will then cover a brief holiday that we are hoping to take. Next week we will take a very short trip down to Mount Annan Botanical Gardens where they are celebrating their 25th anniversary and have some special events on, we hope to have three nights in a local hotel, nice rest whilst someone else does the cooking etc.
19SEP13 - Routine chemotherapy with blood tests. All went went and results of tests are as anticipated.
15SEP13 - I've just come across this link to the original TV program on the 5:2 diet. Don't forget it is a diet for health reasons, not to lose weight although some people end up doing both. I eat more protein on the five days to maintain my weight, I'm just aiming to reduce my IGF-1 on the other two days to put my body into repair mode.
The Original TV Program on the 5:2 diet
Here is another link that explains the 5:2 diet in 6½ minutes:
A short video on what the 5:2 diet does.
09SEP13 - The second week of the 5:2 diet went well, a bit of hunger on the first morning but it soon passed. I'd had a blood test a couple of weeks ago, have only just received the IGF-1 part of it because we'd been away on a short holiday. It was quite a shock really, on the metric scale it was 24 or 180 on the old Imperial one. 24 is right at the top of the range and if it has been like this for any length of time it could account for my susceptibility to cancer, I've been producing skin cancers for a long time and have had Myelodysplasia which is related to cancer. With such a high reading my body would have been replicating faulty genes/cells at high speed. I now really need to get my IGF-1 down to 4 on the metric or 30 on the Imperial, this will switch my body from replicate to repair and hopefully my body will sort out the defective genes/cells. The good thing is that I now know about this problem and there does seem to be a reasonable way of dealing with it, I'm not expecting any miracles but a slight reduction of the tumour size would be welcome.
30AUG13 - First day of the 5:2 diet. No breakfast, this is my lunch, there will be a light evening meal of one veg-burger and half of a small banana, total 600 calories for the day.
The following is the evening meal, a lentil veg-burger with a poached egg, I also managed to squeeze in a full banana, it's in food-wrap because I had to weigh it without the skin. On the day I used up 598.4 calories of my daily allowance of 600 calories.
I normally eat around 2,400 calories each day. Today was not difficult to handle, I did feel a bit hungry about 30 minutes after eating lunch but this soon passed.
29AUG13 - Visit to Oncologist today followed by Chemotherapy. Studied all the tests including the CT Scan, the main tumour has increased by 2 mm on two dimensions but these are notoriously difficult to measure, hopefully the next reading in nine weeks time may be nearer to the original dimensions or even lower. My blood and other tests indicate that it will be safe for me to start the 5:2 diet which aims at reducing my IGF-1 hormone to put it into repair mode resulting in some of my faulty cells that cause cancer being fixed, I'm not expecting any miracles just hoping for a bit of a nudge reducing the tumours by one or two percent.
14AUG13 - today I collected the comprehensive version of the blood test that I had last week just before chemotherapy. It is generally good, the CEA (CarcinoEmbryonic Antigen), or tumour marker is for the first time, since I was diagnosed, within the recommended range. My cholesterol is disgustingly healthy, my haemoglobin and platelets, although just below the range, are the highest they have been for years. Mt next CT Scan will be on the 26th August, results usually take about five days. I hope to start on the 5:2 diet on the 31st August, this hopefully will reduce my growth hormone IGF-1 to the level where it goes into repair mode rather than replication, repair mode might sort out some of the genes that encourage my cancer. I'm hoping for a 2% to 5% reduction in the size of the tumours. My next CT Scan will then be towards the end of October.
09AUG13 - Had Chemo yesterday, blood levels were about my average and I did not have any problems with the treatment. My next CT Scan has been arranged for the 26th August 2013, if all is well I hope to start the 5:2 diet the following weekend, hopefully I will be one of those people whose growth hormone IGF-1 will be reduced to the point where it goes into repair mode helping to control my cancer. The first CT Scan after nine weeks on the diet will be towards the end of October, should get some idea from it if the 5:2 is working.
17JUL13 - Comments on the BBC Horizon TV program "Eat, Fast and live longer" produced and narrated by Michael Mosley. This program also described the 5:2 diet where you eat anything that you like for five days then have two days of reduced calories, 500 for ladies and 600 for men. Those numbers seem to be just enough to suppress hunger pains and the craving for food.
My wife has high cholesterol and I have lung cancer which has recently spread to my ribs, spine, sternum and most lymph nodes so I now have nothing to lose by trying the 5:2 diet.
My wife had had her cholesterol problem for many years she was just above the maximum recommended level. She had followed a strict diet with exercise, we are both vegetarians, she had also been prescribed statins but these made her very ill and she had to stop. We saw the program and have looked at many websites about the 5:2 diet. My wife started first about six weeks ago. The first thing she had done was a test of her cholesterol level and her IGF-1. After five weeks of the diet these tests were repeated and the results were amazing, on the scales used here her cholesterol had dropped by 0.9 which brought her down to a very acceptable level, just in the lower half of the recommended level.
I was not able to go onto the 5:2 diet right away, my weight was far too low and I was concerned about catching cancer cachexia. About a year ago I had a serious lung infection which resulted in me losing a bit over 10 kgs in about three weeks, it has taken me a year of force feeding myself with food supplements to get my weight back to a safe level. My understanding is that with a high IGF-1 level replication of cells takes place including reproducing the defective ones with all their faults, when the IGF-1 level is reduced to the lower part of the range replication of cells is replaced with repair of existing cells, hopefully this process might reduce the number of cancer promoting cells that I have.
My next CT Scan is in about three weeks, on the same day I will have a blood test of my IGF-1. I will also join my wife on the 5:2 diet. The five days will be Monday to Friday and the weekends will be the reduced calorie days. About 9-10 weeks later I'll be due for another CT Scan and again on the same day I'll have a test of my IGF-1. Between the start and finish reference points there should be a good indication of how effective the 5:2 diet is for me. Hopefully on the 5 part of the diet I'll be able to maintain my weight. 20JUL13 - Saw my oncologist a couple of days ago, we counted the days and found that it is a bit too early for another CT Scan so this will not happen until the end of August, hopefully I'll know if this 5:2 diet works for me by the beginning of November.
It seems that the term IGF-1 for Insulin Like Growth Factor was coined in the 1930s or maybe earlier, I wonder if with today's knowledge they might have given it another name. When some people read or hear Insulin Like they lose interest unless they are diabetics. None diabetics tend to miss the fact that this diet could be useful to them.
I hope that in about ten weeks I'll be reporting on the beneficial effects of the 5:2 diet in my fight against lung cancer.
27JUN13 - I had chemo today, no ill effects so far, blood test was good, haemoglobin up from 61 to 112 and CEA (cancer indicators), reduced by four points and I feel real good. Probably have a CT Scan after the next session in three weeks. Following the previous chemotherapy I had to have a two unit blood transfusion, this is because I also have myelodysplasia which results in a deficiency of red cells among other things. Following the recent blood tests it has become apparent that I will probably need blood transfusions at the rate of one unit per three weeks but these may be given in greater doses less often.
08JUN13 - Had been feeling real good since my last chemo-therapy, the Alimta seemed to be working well with no side effects, my weight had finally reached my target so I was quite surprised to find the blood test indicating a serious drop in some levels. My haemoglobin was down to 61, the normal range starts at about 140. I have a rare blood group, they could not give me a transfusion so I had to return the next day. Yesterday they had a successful cross-match and I received two units, about one pint. I'm still feeling quite well and although the transfusion was necessary I do not feel any different from it. The only thing that concerns me is that when I was last on chemo-therapy three years ago the same thing happened and it had to be stopped, I was then put on Targeted Therapy tablets, these stopped working about three months ago so I returned to another form of chemo, the worry is now that I may not be able to continue with the Alimta chemo-therapy and at the moment there is no real alternative.
16MAY13 - Received the results of my CT Scan today, all seems to be well, the measurements of all tumours are stable, which is not bad at all after just three chemo sessions, prior to that they had been growing. The next CT scan will be taken after four more chemo sessions, that will be in about twelve weeks.
01MAY13 - MY GENETIC TESTING RESULTS
Way back in January 2013 I signed up with https://www.23andme.com/ to have my Genome tested, the cost was US$99 + about US$150 for the DHL Courier. The test involved spitting into a test tube and sending it to California. Sadly the first test did not work but they sent me another kit at no cost and this time it did work. The firm 23andme was set up by the wife of the founder of Google, she had her own funds to do this.
Generally there were no nasty surprises, I haven't got all the results yet, some are still being processed by the computer but what I've got are very informative. I now have it confirmed that I cannot handle alcohol, always knew that, a moderate amount of coffee is good for me. I am susceptible to cancer but I knew that and I have disgustingly healthy genes for cholesterol including the good one, these are confirmed by my regular blood tests. I have little chance of developing Alzheimers, other forms of Demetia, Parkinson's or Macular Degeneration. I have a natural immunity to Norovirus and a few other related Gastro problems. In one case I have two genes related to Hepatitis B, one fights it the other makes me susceptible, in this case though I have had regular doses of the vaccine since it became available about 15 years ago. I do not have all the results yet, the computer is still working on them and they will be added to my database as they become available. I'm particularly interested in my ancestral make-up, it seems that many people are quite surprised by this one which can detect origins over several thousands of years.
Generally I'm very pleased with the results which when I've figured out how, I will download to a spreadsheet and pass on the information to my doctors, they are all interested and it will give them valuable information on any treatment that may be necessary for me.
06APR13 - The chemo on the 4th April13 seems to have gone OK with few side effects this time probably because I was better prepared with several tablets and injections in advance. I seem to have regained my appetite and I do not feel as tired as last time. The next test of the progress will be towards the end of May when I will have another CT Scan. The Portacath certainly made the chemotherapy process and the taking of blood samples much easier, just one slight silent yelp as the needle was inserted then I sat back and relaxed with a cup of tea as the process continued; it is also much quicker and easier for the nurses.
23MAR12 - I started on the new chemotherapy on Friday 15th March 13. Just a few people have severe reactions and side effects, seems that I'm one of them. I hope the reactions indicate that the chemo is working well. Ever since I seem to have lost most of my energy, carrying out simple tasks requires a great effort followed by the need for a long rest. I also seem to have lost my appetite and am more or less force feeding myself but most of the time I cannot eat much of my meals, in eight days I've lost three kilos of weight. I will continue for at least three months on this chemo called Alimta, I'm hoping that my body might have adjusted to it better by then but if not I will have to consider my options very carefully. Not much point in prolonging my life if I'm going to be feeling really grotty, lacking in energy and unable to do very much at all, it would not be much better than a vegetable on a life support machine.
05MAR13 - Last week I had my three monthly CT Scan, not the results that I'd hoped for. I've been on Tarceva targetted therapy tablets for 32 months and it seems that they are no longer effective, this happens with most medicines, the body and in particular cancer tumours begin to resist them. The result of this change is that my cancer has in oncology speak metastasised, in common language it has spread to other parts of my lungs, to surrounding bones including my spine at lumbar vertebrae L1. This now calls for a different type of treatment.
In a couple of weeks I will start chemo therapy again, this time on Alimta, a milder form of chemo that hopefully will be less invasive than the previous type which I could not handle. Since having treatment, many blood tests and intravenous injections, quite a lot of scar tissue has built up in my veins making such treatment very difficult. In a few days I will pop into day surgery and have a Portacath inserted in my chest. This device is something like a tap and can be used for giving chemo and other intravenous things into the blood as well as extracting blood for pathology purposes. There are many advantages with this system, the chemo or other medicines are infused very close to the target area making them more efficient. The process of setting up a patient with the plumbing for chemo is quite involved and can take up to thirty minutes, portacaths can be set up in just a few minutes, basically everything is much easier and efficient for both the nurses and the patients.
Before the treatment starts I will be having a bone scan, these can be much more accurate than a CT Scan. It is not expected to produce any new information but will give a very accurate baseline to measure future progress by.
Eventually my body will resist the Alimta, nothing else seems to have been approved yet for further treatment but many new products are in the pipeline. It can take around ten years to thoroughly test and bring a new product to market, this may seem like a lot of red tape but it does considerably avoid debacles like the one associated with thalidomide, the cost of such trials usually exceeds one billion US dollars. For the brave they can participate in clinical trials. Normally these are double blind, neither doctor nor patient knows if they are on the trial drug or a placebo. In most cancer trials they use the gold standard drug for comparison purposes rather than a placebo. By the time a drug reaches the trial stages it has been thoroughly tested for correct dosage and for safety so if there was nothing else I would certainly consider participating in a clinical trial. There are several reputable trials units in Sydney including one at the hospital where I have my treatment.
Still on cancer. The Lung Foundation of Australia has recently published what amounts to a fairly large booklet on the management and other details about Lung Cancer. It is very well written and has just about all the information that a new patient needs to know all in one place. It is called Better Living with Lung Cancer - a Patients Guide. You can buy a hard copy of this guide or download it from the website. I really wish that a booklet like this had been around when I was first diagnosed. You will not find any new information just the known stuff, all well laid out and in one place, so easy to follow.
Continued on 12MAR13 - Last week I had some dental surgery carried out, this was to remove small lumps in the bones of my gums, these were interfering with my implants. The process involved grinding the bones down, coupled with two injections into the roof of the mouth it was quite a torture, is still sore and painful but is improving but I think it will be niggling at me for another week. Yesterday I had a Portacath installed, a very simple procedure for quite a small device or so I thought. A catheter runs from my right jugular to a fleshy part of my chest where the tiny reservoir has been installed, I thought it was to be tiny but once installed it is huge. I am quite tender, the slightest movement is painful so I try to keep still as much as possible. On reading the literature that they gave me after the event I found that this will take about ten days to heal. Still it will be worth it when I come to have chemo, so much easier for the nurses and far more comfortable for me, you cannot avoid pain and discomfort, I'm now getting mine out of the way at the beginning in one hit. The lumps on my gum-bones were identified as tumours, tomorrow I'm hoping that the pathology reports will be back giving more details.
Last week I also had a bone scan, very similar to a PET scan. The patient is injected with a radio-active fluid which is attracted to any cancer, about 2¼ hours later you placed on a huge machine that records where the radio-active fluid has settled, this effectively displays the areas that are affected by cancer. The huge machine is really a form of Geiger Counter, is does not generate radiation like an x-ray, it just records what is there. The level of radio-activity is very low so the whole scan process takes about 45 minutes. Tomorrow I also hope to have the results of this bone scan, this will not provide new information, rather more accurate measurements of the results provided by the last CT Scan, these new results will be used as a baseline for future monitoring. During scanning the patient is not allowed to move, guess what, a few minutes in I had the most incredible itch on my cheek and forehead, needed a lot of willpower to leave it alone.
Continued on the 13th March 2013 - Pleased to say that the discomfort from the insertion of the Portacath has now subsided and is tolerable. Have just received the pathology reports. The tumours on my jaw-bone were not cancerous just fairly normal protrusions that happen as one gets older so be prepared. The bone scan has identified cancer active in my 5th, 6th and 9th ribs. The vertebrae L1 is not mentioned in this report but vertebrae T12 was mentioned as being infected, I suspect that L1 & T12 are the same thing. There are also some cancer outbreaks in the bones near to the heart and lungs. The bone scan also indicated that I have arthritis in my knees and shoulders which I knew about along with it in my left wrist, I was not aware of that.
*** END OF THIS UPDATE ***
My Oncologist has given permission for me to start travelling again. I find self-catering can be very useful, so much easier to cope with the special foods and supplements that I need, I find the following site very useful worldwide for arranging accommodation:
05MAR13 - Last week I had my three monthly CT Scan, not the results that I'd hoped for. I've been on Tarceva targetted therapy tablets for 32 months and it seems that they are no longer effective, this happens with most medicines, the body and in particular cancer tumours begin to resist them. The result of this change is that my cancer has in oncology speak metastasised, in common language it has spread to other parts of my lungs, to surrounding bones including my spine at lumbar vertebrae L1. This now calls for a different type of treatment.
In a couple of weeks I will start chemo therapy again, this time on Alimta, a milder form of chemo that hopefully will be less invasive than the previous type which I could not handle. Since having treatment, many blood tests and intravenous injections, quite a lot of scar tissue has built up in my veins making such treatment very difficult. In a few days I will pop into day surgery and have a Portacath inserted in my chest. This device is something like a tap and can be used for giving chemo and other intravenous things into the blood as well as extracting blood for pathology purposes. There are many advantages with this system, the chemo or other medicines are infused very close to the target area making them more efficient. The process of setting up a patient with the plumbing for chemo is quite involved and can take up to thirty minutes, portacaths can be set up in just a few minutes, basically everything is much easier and efficient for both the nurses and the patients.
Before the treatment starts I will be having a bone scan, these can be much more accurate than a CT Scan. It is not expected to produce any new information but will give a very accurate baseline to measure future progress by.
Eventually my body will resist the Alimta, nothing else seems to have been approved yet for further treatment but many new products are in the pipeline. It can take around ten years to thoroughly test and bring a new product to market, this may seem like a lot of red tape but it does considerably avoid debacles like the one associated with thalidomide, the cost of such trials usually exceeds one billion US dollars. For the brave they can participate in clinical trials. Normally these are double blind, neither doctor nor patient knows if they are on the trial drug or a placebo. In most cancer trials they use the gold standard drug for comparison purposes rather than a placebo. By the time a drug reaches the trial stages it has been thoroughly tested for correct dosage and for safety so if there was nothing else I would certainly consider participating in a clinical trial. There are several reputable trials units in Sydney including one at the hospital where I have my treatment.
Still on cancer. The Lung Foundation of Australia has recently published what amounts to a fairly large booklet on the management and other details about Lung Cancer. It is very well written and has just about all the information that a new patient needs to know all in one place. It is called Better Living with Lung Cancer - a Patients Guide. You can buy a hard copy of this guide or download it from the website. I really wish that a booklet like this had been around when I was first diagnosed. You will not find any new information just the known stuff, all well laid out and in one place, so easy to follow.
Continued on 12MAR13 - Last week I had some dental surgery carried out, this was to remove small lumps in the bones of my gums, these were interfering with my implants. The process involved grinding the bones down, coupled with two injections into the roof of the mouth it was quite a torture, is still sore and painful but is improving but I think it will be niggling at me for another week. Yesterday I had a Portacath installed, a very simple procedure for quite a small device or so I thought. A catheter runs from my right jugular to a fleshy part of my chest where the tiny reservoir has been installed, I thought it was to be tiny but once installed it is huge. I am quite tender, the slightest movement is painful so I try to keep still as much as possible. On reading the literature that they gave me after the event I found that this will take about ten days to heal. Still it will be worth it when I come to have chemo, so much easier for the nurses and far more comfortable for me, you cannot avoid pain and discomfort, I'm now getting mine out of the way at the beginning in one hit. The lumps on my gum-bones were identified as tumours, tomorrow I'm hoping that the pathology reports will be back giving more details.
Last week I also had a bone scan, very similar to a PET scan. The patient is injected with a radio-active fluid which is attracted to any cancer, about 2¼ hours later you placed on a huge machine that records where the radio-active fluid has settled, this effectively displays the areas that are affected by cancer. The huge machine is really a form of Geiger Counter, is does not generate radiation like an x-ray, it just records what is there. The level of radio-activity is very low so the whole scan process takes about 45 minutes. Tomorrow I also hope to have the results of this bone scan, this will not provide new information, rather more accurate measurements of the results provided by the last CT Scan, these new results will be used as a baseline for future monitoring. During scanning the patient is not allowed to move, guess what, a few minutes in I had the most incredible itch on my cheek and forehead, needed a lot of willpower to leave it alone.
Continued on the 13th March 2013 - Pleased to say that the discomfort from the insertion of the Portacath has now subsided and is tolerable. Have just received the pathology reports. The tumours on my jaw-bone were not cancerous just fairly normal protrusions that happen as one gets older so be prepared. The bone scan has identified cancer active in my 5th, 6th and 9th ribs. The vertebrae L1 is not mentioned in this report but vertebrae T12 was mentioned as being infected, I suspect that L1 & T12 are the same thing. There are also some cancer outbreaks in the bones near to the heart and lungs. The bone scan also indicated that I have arthritis in my knees and shoulders which I knew about along with it in my left wrist, I was not aware of that.
*** END OF THIS UPDATE ***
My Oncologist has given permission for me to start travelling again. I find self-catering can be very useful, so much easier to cope with the special foods and supplements that I need, I find the following site very useful worldwide for arranging accommodation:
