Introduction

I have been diagnosed with stage 4, metastatic colorectal cancer in October 2012, 3 days after my 44th birthday. There is no cure, but I am determined to go down the road less travelled to find one. I have setup this blog to document my journey and hopefully help others in the process.

I have studied Computer Science, but was given the option to do a double science degree at Monash Uni. I chose chemistry and ended up majoring in Organic a Bio Chemistry. Never thought that I would find a use for these subjects, but I am now finding them to be innvaluable in my search for a potential colorectal cancer cure.

My view is that if there is a cure, it does not lie with traditional chemo, but with the immune system. Time will tell.

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Colorectal Cancer – Diagnosis

Being diagnosed with cancer is always a shock, though I must admit I took it pretty well. Maybe because I was already prepared for it as when I researched the symptoms that led me to seek out a specialist, I knew it was either Cancer or Gallstones. I was really hoping for the Gallstones.

I knew I had cancer and that it was very bad as soon as looked at my CT scans which I had done in the morning. By the afternoon my doctor called that he needed to see me straight away. I already knew why. Few days later I had a colonoscopy and a biopsy. For a split second I was greatly relieved when my colorectal surgeon said that the biopsy was negative. Unfortunately he added that he probably got a sample from a benign polyp and he was 99% sure that I had cancer. He sent me for a liver biopsy and recommended an oncologist.

Liver biopsy came back positive for adenocarcinoma, and my first meeting with an oncologist followed. To his credit, he was very honest and said without treatment I had maybe two months to live as my liver already started to fail. I was told I had a fist sized tumour near my appendix, and that the cancer spread to surrounding lymph nodes and a small tumour on the left side of the colon. The biggest problem were the extensive mets in the liver, with perhaps over 70% of the liver mass taken up dozens of tumours of all sizes. The CT scan reminded me of swiss cheese.

The oncologist said that surgery was out of the question at this time and recommended I start palliative chemo straight away and look at possible surgery later. I did not realize at the time what palliative chemo meant. Now I know that its systematic chemo till first line fails, followed by second line and when that fails…. death. The average survival is 16-36 month.

One of the questions I asked whether he cured anyone with stage 4 mcrc. He said NO. I then asked whether he knew of anyone that was cured. Again the answer was NO. At that point I realised that I had to find a different path as without a possible colon and liver resection there was no light at the end of the tunnel. Later I gave the same question to 8 other oncologists, and the answers were always NO and NO.

The first oncologist I saw was running a clinical trial comparing Tivozanib and Avastin. He was good salesman and I was the perfect candidate for the trial. He argued that using tivozanib would leave Avastin as a second option down the track. Tivozanib also had better safety data and phase one trial showed an improved PFS (progression free survival). I was told that the level of care would be better as well with a dedicated nurse following my progress. It sounded good so I agreed to join the trial. I was ignorant at the time, but after I educated myself I pulled out of the trial. This is a long story and will dedicate another post to the topic. The moral of the story is “beware of clinical trials”.

All in all I was decimated. No hope for a cure, 2 months without treatment, 12-36 months with chemo, and I was warned that 10% do not respond to Folfox 6. (What I did not know at the time is I would fall in the 10%, but that too is another story.)

Dealing with oncologists, is a challenge in itself and you really have to take things firmly in your own hands. Do not take their advice as be all and end all. Always question everything, get multiple opinions and push to get what you need done. I will expand on this later.

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Laetrile Bread

Fermented breads are said to have an anti cancer properties. The most likely reason is the Leaven, which produces laetrile, also known as vitamin B17. I have been making my own fermented bread (well my parents make it for me nowadays if truth be known) and its not too hard once you master the fermentation process. One surprising thing to note, I have never seen this bread to go moldy.

Recipe

You will need:

500g of rye flour
ideally a ceramic or glass jar to hold at least 3l
wooden spoon
clean cloth, or towel

Method

Day 1: Add 200g of flour to the jar with 1/4 litre of water. Stir thoroughly and leave to stand at room temperature. Cover with cloth or towel.

Day 2: Add 100g of rye flour and 1/4 litre of water. Stir, cover with cloth and leave at room temperature.

Day 3: Add another 100g of rye flour 1/8 litre of water, stir, cover and let stand at room temperature.

Day 4: Add 100g of rye flour, 1/8 litre of water, stir, cover and let stand fir 24 hours at room temperature.

After 4 days, the flour/water mixture would have fermented. It should have a sour/acidic aroma, and have soft dough consistency. Note: It will bubble and rise when fermenting, so the jar should be large enough to account for this.

Rye Sourdough Bread

Ingredients:

400g of Leaven as prepared above
1.5kg Rye Flour
1-2 tea spoons of salt (depending on taste, I use 3)
500g boiled potatoes
200ml water

Method

Sift the flour and add the Leaven, and work into the flour to create the dough.
Cover and leave overnight to rise.
The next day add the potatoes (mashed), salt and enough water to create a firm, non-sticking dough. Create two loaves, and leave for 2 hours at room temperature.

Pre heat the oven to the highest temperature and place a container with water on the bottom. This will keep the bread moist. Place the loaves in the oven, and after about 10 minutes, reduce the temperature to 150 degrees celsius and bake for 40-50 minutes.

When done, sprinkle with water, and wrap in cloth and allow to cool.

This recipe makes 2 loaves of bread. I usually halve the ingredients and make one at a time.

Tips

You don’t need to use potatoes. (I don’t, though the bread is much better with them in. Just increase water to 300ml)
You can add things like nuts, carraway seeds, sunflower seeds etc. depending on taste.
You can also use white flour instead of rye, but rye is better for you.

With the Leaven, if you keep feeding it daily adding little flour and water, it will keep pretty much indefinitely and be always ready to use. It will save you the process of having to make it from scratch.

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MAF 878

20130208-153842.jpgOrdered MAF 878 from ebay and it has finally arrived. Will brew the first batch of pro biotic yogurt today. According to instructions it needs to ferment for about 5 days. The aim is to produce GCMAF which will hopefully help to stimulate the immune system, currently being de-activated by Nagalase (if the research is to be believed). Its not cheap, but I will try to preserve the culture and re use it multiple times. I would have preferred Ruggiero’s MAF 314, but I could not find any place to order the culture from. So Erlander’s MAF 878 will have to do for now.

GCMAF injections have also arrived from Germany and will try these in a few days, a little later in the chemo cycle. I figure there is no use stimulating the immune system while it is being hammered by chemo.

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Hyperthermia

In my search for alternative treatments, Whole Body Hyperthermia caught my attention at a very early stage. The theory behind the treatment is that cancer cells do not tolerate heat very well and when the body temperature is raised to 41.5 degrees or above, this can actually kill the cancer cells. I take this with a grain of salt as if this worked as described, clinics offering whole body hyperthermia treatments would be seeing far better results. BUT, it is well known that higher body temperature stimulates the immune system, and for that alone I decided on a daily Hyperthermia.

Hyperthermia treatments are very common at clinics in Germany and Mexico. They offer both Whole Body and Local Hyperthermia. Common hyperthermia treatments raise the body temperature to only about 39 degrees Celsius. From experience, anything abve 39.5 is very hard to tolerate. Clinics offering higher temperatures such as the Herzog clinic perform the Hyerthermia treatments under general anesthetic. This carries its own risk, but a 41 degree temperature can be sustained for 4 hours in this way. Local hyperthermia is usally done with near infrared rays where a device is placed over the tumour site in an effort to heat up the tumours. Local Hyperthermia is much easier to tolerate, however whether I am a little dubious on whether it can generate sufficient heat to reach mets deep in the abdominal cavity.

Do it yourself Home Hyperthermia Treatment

When I initially looked at hyperthermia, I could not find any local clinics offering the treatment, so I decided to devise a home based version. The choice was whether to simply get a near infrared sauna and use that or make do with a bath tub. I decided that a bath tub would probably provide the best result and give me the best temperature control.

My Hyperthermia Method

I start my daily hyperthermia treatment by filling half a bath tub with water heated to 40 degrees celsius. I bought a thermometer from the local pool shop to monitor the temperature. I then lie in the tub so that only my face is out of water. With is approach, the body has a minimal opportunity to cool itself and your body temperature will soon rise.

Reaching 38 degrees celcius is relatively quick, and reasonably easy to tolerate. At about this temperature, I usually experience a rapid increase in my heart rate. Going from 38.0 to 38.5 degrees is more of a challenge. Firstly it takes a lot longer for each decimal point increase and I find that I start fidgeting and find that I tend to lift my legs or arms out of the water for no reason. It becomes a mental struggle to keep every part of my body submerged.

Once I reach 38.5 degrees my heart rates increases yet again, and from this point onward it starts to get very hard to tolerate the heat. Your really want to jump out of the bath and it takes a lot of will to stay submerged at this point. Somewhere between 38.7 and 39.0 degrees I usually give up and change strategies.

Next I fill up the rest of the bath, and raise the water temperature to a toasty 44 degrees celsius. This time I sit up in the bath with my head, shoulders and arms out of the water. This is a little more bearable and enables me to continue. Getting from 38.7 to 39.0 degrees I find doable, but it is slow going. At 39 I find that my heart starts to pump harder and it starts to feel as if it wants to jump out of my chest. At this point it becomes a mental struggle again, and the maximum that I can tolerate is about 39.5 degrees. My personal record is 40.1 degrees, but when I did this I already had a 38 degree fever and this made it easier to tolerate.

Using the last of my willpower I submerge myself in the 44 degree water for as long as I can stand it and then bail. Then I start the next phase. I put on thick bath robe, wrap my head in a towel and jump into bed covered with blankets. For the next 30 minutes or so I will sweat profusely and wait till my temperature drops to about 38 degrees. I also make good use of heat bags and I place these above my tumour sites.

The next stage is local hyperthermia. For this I have bought an ordinary desk lamp and replaced the light globe with a 250watt near infrared one. (the cost is well under $100). I position the light above my tumour sites, just far enough to get a burning sensation on the skin. When the heat becomes intolerable I move the lamp to an adjacent area. This way I can cover most of liver and abdomen without getting burned.

After 20-30 mins of local hyperthermia, I jump back in the bath and sip on a chilled fresh coconut. This is reported to have anti cancer properties (which is a bonus), but my main reason is that fresh coconut milk is a great way to replace the lost electrolytes. This becomes the highlight of my day.

Hyperthermia Results

I can’t really quantify the result of my hyperthermia treatment, however my white cell counts have always been in the normal range after every chemo cycle. (had 7 thus far). More important during the hyperthermia treatment I experience no nausea, which I otherwise suffer from all the time. Also when I have liver pains, hyperthermia greatly reduced this during the procedure and for several hours after. If nothing else, this is reason enough for me to keep going.

Few other tips. Before you start, make yourself a pot of hot ginger tee, using fresh ginger steeped in water. Drinking the hot tea increases the temperature rise rate, and is also great for you. Hyperthermia is very demanding on your heart, so best to consult with your doctor before starting if you have doubts. Lastly make sure you have supervision. You can pass out from the heat and you don’t want to do that in a bath full of water. I myself struggle not to faint sometimes when getting out of the hot bath, so take care.

One last tip, If you want to crank things up, taking beta blockers will reduce your heart rate and enable you to tolerate higher temperatures.

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Chemotherapy 101

20130216-185610.jpgWhen I was first told that I had to undergo extensive chemotherapy, I wanted to find out all there is to know about what it was and how it worked. I have a good grasp of organic chemistry, including platinum chemistry, but I still had some gaps I wanted to fill in. I expected my oncologist to provide the answers. After all administering chemo is their main business and pretty much all that they do so they have to know all there is to know right? WRONG! Unfortunately I found out how little most oncologist know about chemotherapy. I guess If they were like me, they were too drunk to attend many of their Oncology 101 lectures.

My main question was quite simple, “how long does oxaliplatin keep killing cells after the infusion?” The first answer I got was 14 days. This happens to be the length of the chemo cycle. Well I knew this was rubbish and the oncologist did not know and just took a guess. Second oncologist was no better, but at least he had the guts to say “I don’t know’ but will find out” (he never did). I needed to know how everything works, so that I could dose the various supplements that I was taking so as not to interfere with the chemo action. I found no help from any of the oncologists I had spoken with and had to rely on my own research.

5FU

5FU (Fluorouracil) is part of both the folfox and folfiri chemo regiments. 5FU is an antimetabolite, and works during the S phase of cell division. S phase is the step where DNA is replicated in preparation for cell division. 5FU has to be inside the cell during the S phase to have an effect. This is why it is typically given over two days via pump. 5FU has a very short half life, about 15 minutes, so it does not stay long in the blood stream. (hence the continuous pump). What it means is that in about 12 hours after the 5FU pump is disconnected, 5FU is pretty much done.

Leucovorin

Also known as Folinic Acid, it is given as part of both folfox and folfiri. Its function is to make it easier for 5FU to get inside cells. Its similarity to folic acid is why most oncologists recommend not taking this supplement during chemo.

Oxaliplatin

This is a real nasty. The active form of oxaliplatin has a half life of about 13 minutes in the blood stream, and has to enter the cells before it binds to blood antigens and proteins, which it does readily. Once oxaliplatin binds to blood antigens it become innefective. What an oncologist will not tell you is that the platinum will stay in your system for many years, and can still cause DNA damage years later. Think of Mercury poisoning, Platinum is not much better. There have been no long term studies on Oxaliplatin and even 5 years later your platinum levels will likely be 30 times the norm.

Oxaliplatin does not depend on a specific cell cycle. It works by enterng the cells and binding with DNA strands, creating crosslinks. The cells can not unwind the DNA strands and this triggers cell death through apoptosis (self induced programmed cell death). Oxaliplatin has a limited use however. Typically either the neutropathy the drug causes means that you have to discontinue the treatment, or the cells will mutate and develop a better repair mechanism. Basically the cells will learn how to excise the crosslinked DNA, and repair the damage rendering oxaliplatin ineffective there after. Typically oxaliplatin is useful for about 6 months. So how long is oxaliplatin active in killing cells? My best answer: about 5 days.

Irinotecan

Irinotecan is part of the folfiri chemo regime. It works during the G1 phase of cell division. This is the phase where DNA unwinds. Its main function is to inhibit DNA replication and transcription. The half life of Irinotecan is much longer, up to 12 hours which means it will remain active for about 3-4 days after infusion.

Avastin

Avastin is the trade name for Bevacizumab. It is a monoclonal antibody and its often given in combination with Folfox and Folfiri. Its function is to inhibit angiogenesis, which basically means it slows down the growth of new blood vessels which cancer needs for new growth. It works by inhibiting VEGF-A, a chemical signal that stimulates angiogenesis. The half life of Avastin is 21 days, which means it will remain active for several months.

Avastin can cause nose bleeds, internal bleeding in the digestive tract, hemorrhages and high blood pressure. Wounds will also heal much slower.

Chemo Summary

Chemotherapy is usually given in 2 week cycles. The first 5 days is when most of the damage is done, the rest of the time is a recovery period. The theory is that your normal cells can recover faster than the cancer cells. Chemo has the greatest impact on fast dividing cells, such as cancer, unfortunately there are other cells in your body that divide at a fast rate and the chemo does not discriminate. The cells that are most impacted include the cells lining your digestive tract, bone marrow, hair follicals, lining of your mouth and nose.

Chemotherapy Side Effects

What are the side effects of chemotherapy? The short answer is that there are many, but everyone responds differently. Before you start your treatment, you will be given a long list of potential side effects for each drug, or you can find a full list online. My side effects were:
Folfox + avastin: Neuropathy courtesy of oxaliplatin, constipation caused by leucovorin, nose bleeds and rectal bleeding due to avastin and ofcourse nausea.
Folfiri + avastin: Hair loss due to Irinitocan, otherwise the same as folfox, but without the oxaliplatin neuropathy. Nausea I noticed was a little worse. I will describe my chemo experience in more detail in another post.

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Nagalase Test

I have been trying very hard to find a lab where Nagalase test could be done in Australia. After calling just about every Australian  pathology lab, managed to find one that does it at a reasonable cost. Melbourne Pathology make the test available through the Adelaide Children’s Hospital for only $110.

Nagalase or A-N-acetylgalactosaminidase is a glycoside hydrolase from bacteria and animals and promotes immune suppression by inactivating Macrophages. It has been reported that Nagalese accumulates in cancer patients as part of the tumour’s defence mechanism. Nagalase levels can be a better marker than CEA to monitor cancer activity according to some studies, though this is somewhat contravertial.

GCMAF can negate the effects of Nagalase by directly stimulating macrophages. I have ordered some GCMAF injections from http://gcmaf.eu and will give it a try. Should not do any harm, and if it helps, well that will be a bonus.

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First Vitamin C IV

Went in for my first Inravenous Vitamin C treatment today, much to the delight of my oncologist, who is convinced that I will screw up his prescribed chemo treatment. Needless to say I did a lot of my own research and I don’t subscribe to his point of view.

Started with a relatively low dose of 15g. Will ramp it up to 90g over the next few weeks. I will also add lipoic acid and bicarbonate to the mix and supplement with Vitamins K2 and K3.

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Intravenous Vitamin C

When I started looking through the dozens (if not hundreds) of alternative and adjuvant cancer therapies, High Dose Intravenous Vitamin C is one that caught my attention early on.  Advocated as a potential cure by Linus Pauling, a very respectable scientist in his day, it has been subject to a great deal controversy ever since.

Cancer cells have a high affinity for vitamin C and readily take it up. This is because Vitamin C is structurally very similar to glucose. (in fact commercially, Vitamin C is made from glucose) Usually vitamin C is a powerful antioxidant, but in high doses it acts as an oxidant, reacting with metal ions to create hydrogen peroxide. Hydrogen peroxide is then responsible for oxidative damage to the cancer cell resulting in apoptosis. It has been argued that Vitamin C in high doses is selectively cytotoxic to cancer cells and may thus be used as an effective chemotherapy agent. (I am sure that this does not sit well with the various pharmaceutical firms)

I went through the Vitamin C chemistry with a fine tooth-comb, and I could not fault it. (who said that my biochem degree would never come in handy?) As there are virtually no significant side effects I decided to take 90g vitamin C (which is 1.5g per kilogram of body weight). Needless to say, my very traditional oncologist disapproved strongly and had the hospital pharmacy provide me with studies on how and why Vitamin C and Chemo is a bad combination. (Can’t help but smell a bit if pharmaceutical industry propaganda there).

The evidence against Vitamin C

I reviewed several of the studies that I received from my oncologist, and after reading them, that is when decided that Vitamin C therapy is the right decision for me. The first study from the 1970′s indicated that Vitamin C has mutagenic properties. What they failed to mention is that in that study, copper was given together with Vit C. Basically its like giving dioxins with orange juice and making a claim that orange juice is carcinogenic. The study was rubbish.

The next study, done in guinea pigs, allegedly showed high doses of Vit C helping cancer cells to grow. First problem with the study is that oral instead of intravenous Vitamin C was used. Its simply not possible to reach the needed concentrations using oral administration to have the same effect.  Secondly there is a large Vitamin C clinical trial by the Mayo Clinic which showed that Oral Vitamin C had no impact on cancer. This means that Vitamin C did not decrease the overall survival time, making this study irrelevant.

The Mayo clinic Vitamin C trials were used to discredit Linus Pauling’s work. The problem with these trials is that they all used 10g of oral vitamin C, where as Pauling used both oral and IV administration. For me, this makes the Mayo trials irrelevant and they do not apply to IV C.

The cornerstone of all objections to Vit C with chemo is a study done by Sloan Kettering which showed that Vitamin C can interfere with many chemotherapy agents. The study was done in vitro and in mice. Firstly the favourite argument used by oncologists is “Just because it works in vitro (in a test tube) does not mean it will work in vivo (inside the body)”. Well I’ll throw that one back at you. That is my first argument. The second argument is why choose mice for a Vitamin C experiment? Surely the researchers must have known that mice produce their own Vitamin C, equivalent to 10g per day in humans. Chemo works just fine in mice even with their Vitamin C btw. Next problem I have with the study is that the director of research at SK just happens to also be on the board of a large pharmaceutical company. Its like letting the tobacco companies run their own research on the dangers of smoking. Besides there are dozens of studies that show that Vitamin C has synergetic effects with chemotherapy. Even oxidants like Cisplatin and Oxaliplatin, which I was most concerned about.

Sadly, my oncologist pretty much refused to consider all the other vitamin C research papers and refused to offer Vitamin C as part of my chemo treatment. (I guess Vitamin C was not recommended at any of the industry sponsored oncology conferences he attends so it must not work. Don’t get me wrong, I respect my oncologist  and he is good at dosing chemo, but there is a bigger world of possibilities out there if one can open one’s mind to them). Even the pharmacy girl that delivered the vitamin C research told me that there is a lot of evidence that Vitamin C can be of benefit to cancer patients. She had to tow the company line however and added that it is best to wait till after chemo. Unfortunately with palliative chemo, I don’t have that option.

Can Vitamin C Cure Cancer?

It may in some people, but I very much doubt that it will be the cure that I seek.  I believe that just like with other chemo agents, Vitamin C has limited use and that eventually the cancer cells will evolve a repair mechanisms to deal with the oxidative damage it causes. (Just like they do with other oxidants like cisplatin and oxaliplatin). Vitamin C can reduce many side effects of chemotherapy, can increase the quality of life in patients and helps to boost the immune system. Even if it does not lead to a cure, for that alone it is worth it.

My Strategy

My aim is to throw everything possible at my cancer and IV vitamin C is a part of that strategy. I like the fact that cancer cells take up Vitamin C as readily as glucose, and Vitamin C they can’t use for energy. (anything to make life harder for my little mutants is a good thing in my book) I also started on a Ketogenic diet to reduce my blood glucose levels to a minimum. The higher the Vit C/Glucose ratio, the more Vitamin C the cancers are likely to soak up.

I just started on IV Vitamin C, slowly building the dose from 15g to 90g. This is important as there are reports of deaths due to rapid cancer necrosis resulting in kidney failure following High Dose Vitamin C Therapy. I plan on 3 weekly infusions, Monday, Wednesday and Friday. I will be taking 10g of liposomic Vitamin C on the off days. I will be adding lipoic acid IV to the treatment and Sodium Bicarbonate (as my bicarb blood levels have been low since being diagnosed with cancer). I also plan to take supplements of Vitamin K2 and K3 which make Vitamin C more potent. I will report on my progress.

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The Chemo Experience

20130216-185610.jpgI started Chemotherapy, 3 months ago and I am currently on my second cycle of FOLFIRI, after 5 cycles of FOLFOX-6 (which did not have the effect I had hoped for). This post is a recap of my experience to date, and I will update it every 2 weeks:

FOLFOX Cycle 1

The first round of Chemo I found the worst. The first two days were fine (due to all the pre-med steroids they include in the chemo cocktail I assume). On Day 3 things got bad. I developed a high fever, which scared the hell out of me based on the hospital documentation on how dangerous infections with a chemo compromised immune system could be. Rather than calling the ambulance, as recommended by the hospital documentation, I called my oncologist instead. I only got as far as his secretary and described to her my condition. She called me back about ten minutes later telling me that a fever is to be expected with the chemo that I am having, and to take a panadol. Would have been nice to actually speak to the oncologist. :( I felt quite weak on days 3 and 4, but the fever went away after about 12 hours. Later I was told that it was most likely a sign that the chemo was working.

I was told that I may experience a diarrhea, but I found quite the opposite to be the issue, due to the leucovorin. On day 5, passing stool became a major challenge. I developed fissures in my rectum, which caused bleeding and pain, lots of pain. By day six I dreaded going to the toilet, and the closest I can describe the sensation is: imagine passing razor blades. On day 7 things started to get a little better.

Nausea is my ongoing challenge. I had constant nausea for two months before I started chemo, probably due to the extensive liver mets, so I can’t really say how much chemo contributed to this. I did not find that it got any worse, and for that I am grateful.

Then there was neuropathy due to Oxaliplatin and anything cold felt like pins and needles. This lasted for about 2 days. It was very hard to handle anything cold, and drinking cold drinks was impossible.

Developed a sore on the tip of the tongue. Rinsed my mouth with salt water after each meal there after and it cleared up 3 days later.

Lastly, the steroid, dexamethasone I found made it hard to sleep. I got maybe 2 hours sleep the first two days after chemo. Out of desperation tried sleeping pills, but found these of little help.

FOLFOX Cycle 2

Compared to the first cycle, the second was a breeze. Only main side effect I experienced was again the Oxaliplatin neuropathy in response to anything cold. I also noticed a change in taste. I found that savory foods especially like aged cheese just did not have the same flavor bite as before. My blood pressure was high after the first cycle so on this round no Avastin was given.

FOLFOX Cycle 3

Oxaliplatin neuropathy I noticed getting worse. The reaction to anything cold was stronger and the neuropathy lasted 5 days. I found wounds very slow to heal. Most likely due to the angiogenesis inhibitor Avastin which I resumed. I noticed blood clots when ever I blew my nose.

I stopped taking all anti nausea medication which I was prescribed. I found that there was no difference whether I took them or not, and without dexamethaosone, I was able to sleep better too.

My red blood cells were taking a hammering, progressively getting worse with each cycle. My white cells were relatively good, aways within normal range. I took betaglucans to boost the immune system and daily hyperthermia which may have helped the white cell counts. For red blood cells, I did some research and started drinking stinging nettle tea. This seemed to have helped and my red cell counts recovered slightly.

FOLFOX Cycle 4

Fourth cycle, and the Oxaliplatin neuropathy has gotten much worse. During the second day of chemo neuropathy was triggered not only by cold, but pressure alone is now enough to trigger the painful pins and needles sensation. The neuropathy lasted longer than ever and I could still feel its effects 8 days after chemo.

During the night of the 6th day my nose got blocked. I get that from hay fever from time to time so initially paid not much attention to this till I tried to blow my nose. A large lump of mucous and congealed blood came out, a hefty mass taking up the palm of my hand. My nose oozed blood slowly for almost 3 hours there after. Avastin at its best I figure. I am keeping eye for dark stool to make sure the same is not happening in my bowels. Luckily this experience was not repeated.

FOLFOX Cycle 5

Oxaliplatin neuropathy getting worse with each cycle it seems. This time I started to feel it in my feet when walking on cold tiles. Nothing a pair of socks can’t fix but. The Oxaliplatin effects lasted for almost 12 days this time round. At this rate, I hate to imagine the effects after the 12th cycle.

Flossing my teeth was apparently not a good idea, and I got a very bad gum infection probably as the result. By mid cycle I was lancing boils. It got better but would not heal.

Nausea is my constant friend. The only time I feel half decent is the first two days of chemo thanks to the steroid infusion. I still refuse to take any medication for it. I figure my liver has enough to cope with already.

FOLFIRI Cycle 1

CEA was rising every two weeks during the last 5 cycles. It climbed from around 600 to 2800. I was hoping that the rising CEA was due to cancer cell death, but that was not to be. New CT scans revealed no change in my tumour load. Some mets grew, a few got smaller. As a result, I was moved from FOLFOX to FOLFIRI, hoping for a better result.

The first FOLFIRI experience was little different to FOLFOX. I had hot flushes during the infusion, and I felt a higher level of nausea than usual. I was warned of diarrhea, but on the second day, got the worst constipation I have ever experienced. (I would have preffered the diarrhea). Took several hours of effort to finally clear my bowels and then things got better. On days 4 and 5 experienced mild fever.

My gum infection much better but still there. I can feel it deep in my jaw bone now. Does not hurt, but sensitive to touch.

Hair loss due to Irinotecan is kicking in. Lost maybe 50% of my hair by the end of the 14 day cycle. Time to get it shaved and beat the chemo to it. :)

CEA dropped by 400 to 2400. This is the first time it had dropped, hooefully that means something, but still a long way to go.

FOLFIRI Cycle 2

Very happy not to have the Oxaliplatin neuropathy, however irinotecan is bringing new challenges. First thing I noticed, a strange sensation in my mouth. Its very hard to describe the feeling, but I know its because many of the lining cells are dying. I also discovered that I virtually lost my sense of taste for anything sweet. Taste buds too apparently are taking one for the team.

Nausea is much worse than previously. It got to a point where I had to take something so took Zofran. Its supposed to work very well and very quickly, but all I got is a mild relief for maybe 15 minutes. Eating is starting to be a challenge as well, but I force myself. Can’t afford to lose the weight I worked so hard to put back on. The Ketogenic diet I put myself on is making this hard too.

My gum infection is still not healing and its been almost a month now. I can still feel it sensitive to the touch. Time to maybe see a dentist and try some antibiotics.

Days 4 and 5 also experienced a low fever. I like fever.

Finding that on days 3 and 4 of the cycle, am feeling much more tired on FOLFIRI. Hopefully that and the mild fevers are a good sign.

FOLFIRI Cycle 3 (22 Feb 2013)

My low grade fever continues. Every evening my temperature is elevated, between 37.2 to 37.5 degrees Celsius. Still struggling with a gum infection, which may be its cause, but I feel that this not likely. Seeing a Dentist early next week, the earliest time that was available that did not clash with what is now a very busy schedule.

High Dose Vitamin C IV I am starting to like. This week I got up to the full dose of 90g, which roughly works out at 1.5g per kilogram of body weight. I have it 3x per week, and every day that I have it, my nausea has been greatly reduced or eliminated. Today I actually feel normal which after 6 months of near constant nausea is an amazing feeling.

My nausea is getting stronger however, but this is more due to my liver problem than chemo. I have made the decision not to take any anti nausea medications, especially since Zofran did not seem to do much anyway. I figure my liver does not need the extra load. I am learning to live with it.

My blood counts following Round 2 were the lowest to date, but still good enough to continue with this cycle. Especially red blood cells. I got sloppy with my nettle tea consumption, so will try harder as this herb seems to help.

Avastin continues to cause havoc and blowing my nose is often quite an experience. Wounds are slow to heal, which I am seeing with a burnt elbow (don’t ask, long story involving my home made local hyperthermia device).

No other side effects to report, which is good.

FOLFIRI Cycle 4 (1 Mar 2013)

This cycle of FOLFIRI was the worst and best at the same time. During the first week, the level of nausea hit an all time high, and It took a great deal of control to fight the urge to vomit. This lasted for several days and the whole first week was a write-off. Even my vitamin C IV, which always reduced or eliminated my nausea (for a while at least) seemed less effective.

During the second week, things improved, and towards the end of the cycle, I had several days of being almost normal. This was a refreshing change from the near constant nausea of the past 7 months. I also felt that the type of nausea during the second week had more to do with the chemo rather than my ongoing liver problems, which have been the major contributing factor in the past.

I finally had a chance to see a dentist for my tooth infection that has been plaguing me for the last 6 weeks or so and I was given a broad spectrum antibiotic. This worked like a charm and the infection cleared up within 3 days. Should have done this earlier.

This cycle brought additional problems. A rather painful ulcer developed on the side of my tongue. Fortunately it cleared up within a week. As if I did not have enough problems, haemorrhoids popped up, and these don’t seem to be going away. All courtesy of Leucovorin I suspect. Seems like pain is becoming a part of my life as much as nausea. (I prefer the pain however).

During this cycle I got another blow. CT scans showed no significant tumor shrinkage. In fact most of my liver mets grew by a few millimetres. This means that just like FOLFOX, the second line FOLFIRI is not having much impact. I am committed to two more cycles, but after that I will pursue other treatment options while I am still in relatively good health.

To be continued….

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