GCMAF First Injection

20130216-185250.jpgI timed my GCMAF injections to avoid the worst of the chemo cytotoxic effects and today was the day. Let me just say that I hate needles. I get sick when ever I have to get my blood taken, and I have been known to faint if they have troubles finding a vein. I know its all psychological, but no idea how to overcome it. The port has been great and for some reason I have absolutely no problem with this. No problems with the needle going in, and I can watch the blood being taken with no reaction what so ever. Go figure.

Anyway, so here I am, with syringe loaded with GCMAF, expected to inject myself for the first time. I practice a few times, and I sit there for what seems like eternity. Finally I get enough courage, swab a patch of skin on the stomach and go for the Subcutaneous shot. My hands start to shake as I push the needle in. And then, the biggest surprise of all. No hint of pain, no chills, no rush of nausea and no fainting. The needle is very thin and I guess I managed to bypass all the nerves. How interesting. Next time I go for a blood test, I may just have to draw the blood myself. 🙂

Glad for the relatively good experience, because Iscador shots arrive next week and these are given every second day and I will have to repeat the process for the next few months at least, if not longer.

You will find more info on GCMAF in other parts of the blog. Iscador (mistletoe extract) is new for me and I will cover it in the near future. I doubt that any of these treatments lead to a cure for advanced mCRC, but anything which does no harm and boosts the immune system is worth a shot or two in my view, needles and all.

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Aspirin, PIK3CA and Cancer

Very early on in my research I came across a meta study on aspirin and its possible impact on Cancer. It was one of the first topics I discussed with my oncologist. He told me that Aspirin can help prevent cancer, but once you have it there is no evidence that it is of any benefit. He advised me that taking Aspirin together with Avastin is a potentially dangerous combination as it can increase the risk of bleeding and stroke.

I was however armed with a meta study published in the New England Journal of Medicine, which showed a significant increase in Overall Survival in patients who took even low dose aspirin. This effect was only seen in patients with the PIK3CA mutation. My oncologist dismissed the study not even bothering to actually look it up. His attitude was like, “you are just the patient, what the hell do u know about cancer and stuff”. Anyway, I asked him to organize a PIK3CA test as I did not want to start taking aspirin if there would be no benefit. From my research I knew that even with positive KRAS test, I still had an 11% chance of also having this second mutation.

Two weeks later during my next visit, I enquired about the PIK3CA test. To my shock I was told that that test is non standard and he did not organize it and refused to do so. When I argued, I was given the phone number to the lab that had my biopsy and was told that if I wanted it done, to organize it myself. I also wanted the BRAF and NRAS tests done. The other argument, was that with KRAS having BRAF etc. was not possible as these were mutually exclusive. I did my research and I knew that all three mutations can co-exist with KRAS, though the probabilities were low. So I again tried to educate my oncologist, but I am sure It fell on deaf ears yet again.

Later in the week I rang the lab, but was told that only an oncologist could request the additional tests. Great! Fortunately I was told that the tests were already ordered. It turns out that my oncologist inadvertently requested all four tests as part of KRAS. Only KRAS came back due to a backlog at the lab and a holiday taken by one of the lab technicians. Two weeks later I had my results. 🙂

During the next visit, my oncologist surprised me and had a printout of the aspirin study that I had mentioned earlier. He also read it, shock horror. What happened I thought? It turns out that my PIK3CA test was positive and I had a mutation in the PIK3CA gene as well. The lab report referred to the same study I had found, saying that there is evidence that patients with this mutation can benefit from aspirin. My oncologist, then went on to recommend that I start taking low dose aspirin and that the risk of taking it vith avastin was worth it. He learned that Aspirin was valuable, that the non-standard tests for PIK3CA could have value and that BRAF, NRAS and PIK3CA mutations can all co-exist with KRAS. From that day I felt that his attitude changed, and was no longer as dismissive of new information that I brought forward. This problem I found with many oncologists both traditional and alternative. They think of themselves as gods and as such know it all, hence the frequent arrogance.

As of that day, I have been on 100mg of aspirin daily. If you have not had your PIK3CA test done, it is a good idea to have it done as it can potentially buy you an additional year of life.

Resources

http://www.nejm.org/doi/pdf/10.1056/NEJMoa1207756

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Clinical Trials Warning

When I was initially diagnosed with stage 4 colorectal cancer, my oncologist recommended that I take part in a clinical trial that he was running. It was a phase 2 trial comparing the effectiveness of a new drug Tivozanib versus Avastin. He had a great sales pitch and his main arguments were:

1. IF I received Tivozanib in the trial, this would leave Avastin in reserve to use later. This was a very good thing, he said, as It would leave another option on the table once Tivozanib stopped working.

2. In the phase one trial, Tivozanib was shown to be safer, with less side effects than Avastin. The most important however, was a 2 month increase in PFS (Progression Free Survival).

3. I would receive a much better standard of care with additional tests, a dedicated trial nurse to look after me etc.

As this was my first meeting with the oncologist, I had little experience in these things and was inclined to trust his judgement. So I quite happily signed up to take part in the trial. For my oncologist this must have been christmas come early, as I was the ideal candidate for the trial and I would have been the first at the hospital. (He did not mention this, but I found this out later from the trial nurse).

Once I got home, I began to research Tivozanib in more detail and that is when doubt started to set in. There was very little information available and the phase 1 study did indeed look promising, but when I looked at the manufacturer of the drug, I discovered that they had financial trouble, and fired around 150, mostly research staff. You don’t do that unless you are in some serious trouble. So I dug deeper.

The problem with Tivozanib turned out to be a phase 3 trial for Renal Cancer. Preliminary results reported to the FDA showed a decrease in OS (Overall Survival) even with better PFS results. The manufacturer argued that these were preliminary results as not enough people had died yet. Still it was enough to put the FDA approval of Tivozanib in doubt and this was the cause of the financial troubles as investors pulled out. Oddly when a I mentioned all of this to my oncologist he knew nothing of this, nor of the renal cancer trial results.

So here I was about to take part in a dose escalation trial for a drug that would at most give me 2 months better PFS, but could shorten my life in the process. There was no upside here.

I than realised something else. While I was on Tivozanib, my oncologist would want to keep me JUST on Folfox + Tivozanib until the disease progressed. He would not offer any other treatment as that would make me illegible for the trial and he would discourage me from seeking anything else. As it turned out, Folfox just produced a stable disease for me after 5 cycles. My new oncologist put me onto Folfiri instead. Had I been on the trial I would have been left in Folfox till the disease progressed.

After doing more research, I realised that the argument of using Tivozanib first and leaving Avastin in reserve did not stand up either. Both drugs target the VEGF receptor. Once my little mutants mutate further and learn how to bypass VEGF to sustain angiogenesis, both Tivozanib and Avastin would stop being effective.

The better care argument was spot on. I had lots of extra care while on the trial, extra tests and a personal nurse tracking my health and progress. That was nice, but not likely to make any difference in the long run.

I also sought a second, third, fourth and even fifth opinion. I talked to an oncologist at the same hospital, and three others to get their opinion about the trial. 3 out of 4 oncologists I have spoken to advised against the trial. One was neutral. They said that from their experience most clinical trials are detrimental to the patients involved and would not recommend them, especially phase 1 & 2 trials.

When I informed my oncologist that I was pulling out if the trial he was not happy. I could see it in his face. But he did say that I could pull out any time. What upset me the most however, is the hospital invoiced me for all the extra CT scans they did for the trial which were supposed to have been covered by the trial sponsor. That was low I though, especially as this was a private hospital and I had no insurance to cover any treatments done there.

In summary, from the feedback I received from various oncologists, the consensus seems to be that most trials are detrimental to patients and oncologists are likely to withhold other possible treatments while on the trial. You also risk being a guinea pig for the testing of new treatments and many people have died from trials, especially those in phase 1. Still, if you are out of options and time, some trials can be worth the risks. I would however assess the possible benefits very carefully. A trial of a new drug which at best will give you 2 months PFS like in my case, I would not go into.

Tip: When joining a trial, don’t forget to ask about the relationship the oncologist has with the trial sponsor. Many trials will actually pay the oncologist a substantial amount for every patient they sign up. If your oncologist receives financial gain from your trial participation, be extra careful and always get a second opinion.

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Fever, Fever

Hippocrates the father of modern medicine is reported to have said: “Give me a fever and I can cure any disease.” – I think he is not wrong.

Something curious has happened during my second FOLFIRI cycle. Every evening for the last 8 days, I have had low grade fever in the 37.3 to 37.5 degrees Celsius range. I had fever one day during my first Folfox treatment months ago, but nothing like this.

Fever can be a sign of increasing cancer cell apoptosis, or the immune system being stirred into action, both of which would be a very good thing. The question is what caused the fever in the first place?

During The first Folfiri cycle I had no fever, and unfortunately I introduced 3 new adjuvant treatments and any one or folfiri could be responsible. Coinciding with the second Folfiri cycle I started:

1. high dose vitamin C IV therapy
2. taking MAF 878 pro biotic yogurt daily
3. weekly GCMAF injections

I am hoping the fever continues, and I am looking forward to my next blood test results. In the meantime I am still continuing with my daily whole body hyperthermia to get my temperature even higher for at least an hour each day.

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Supplements

20130213-163515.jpgMy order of phospholipids arrived today. Another $900 well spent (or wasted as some would say), on a 2 month supply. Something new to add to my ever growing supplement list.

This is a good time to take stock of my supplement regime, as it is getting out of hand. I have become a victim of my own research it seems and my desire to throw everything possible at my little mutants has led me to this:

The photo is my morning dose of various supplements. This is repeated 3 times a day.

I went to the effort of counting the pills, and the count is 120 per day and still waiting on more exotic stuff to arrive from various parts of the world, which will bring the total to about 150.

Even to me this is starting to look insane, but pruning my list is proving difficult as everything I take has been carefully selected and researched. It now takes quite an effort to swallow all these pills and some make my daily nausea worse. 🙁 Time to re-visit my list I think.

I have setup a new category on supplements and over the next few weeks will document everything that I am taking and my reasons why.

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Death by Chemo

20130216-184938.jpgAnyone who has researched chemo is probably aware that in the long term, if cancer does not kill you, chemo will. I always expected that if I was to die from chemo, it would be after many months or years of treatment. I did not expect to be killed in the first month.

I had my baxter chemo bottle connected and was lying on the couch watching TV. I than noticed one of my kids staring at me in horror. For what ever reason, the baxter bottle came undone, and I found myself lying in a pool of blood. Even though my pants and shirt were soaked in blood, I simply did not notice. Lucky the kids did.

I estimated that in the 15 minutes or so when the bottle came lose, I lost maybe 200ml of blood. I hate to imagine what the consequences would have been had this happened in the evening while asleep. Well ok, I imagine I would have bled to death.

From that day, I always have the nurse securely tape all the chemo pump connections just in case.

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Blue Scorpion Venom, Escozine

20130217-113610.jpgWhen I was first diagnosed with cancer and told that there was no cure, I started looking for possible alternate treatments. Escozine, or Blue Scorpion Venom, was the first thing I found. I have not done much research at that point, and ordering escozine was pretty much a knee jerk reaction. I think I paid a little under $3000 for a 3 month supply.

The escozine web site had virtually no information about what Blue Scirpion Venom was exactly, how it worked or what the active ingredients were. Being a scorpion venom, I have to assume that the active ingredient is some kind of neurotoxin. (As an interesting note, TM 601 a synthetic version of chlorotoxin from the deathstalker scorpion is in phase 2 clinical trials to treat glioma and other cancers expressing MMP-2.)

The Blue Scorpion venom contains over 50 chemicals, enzymes and peptides including phozpholipase, hyaluronidase, the venom peptide RjAa12f, which is the active neurotoxin.

Looking at research, scorpion venom may be most effective in treating gliomas, breast cancer and leukemias. (Not very much on colorectal cancer.)

My experience with Escozine was poor. After 2 months of treatment, there was no noticeable impact on my adenocarcenoma. In hind sight it was a waste of money, but still worth a try I think.

Blue scorpion venom is also available in homeopathic preparations such as Vioxx. I would not recommend these, as although cheaper, the dilutions are so low that you are basically paying for pure water.

Resources

http://www.mskcc.org/cancer-care/herb/scorpion-venom
http://en.wikipedia.org/wiki/Chlorotoxin
http://www.es.lifescozulcuba.com/paper_2.pdf

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Phospholipid PNAE

20130216-200155.jpgPNAE (plasmanyl-N-acyl-etanolamine or 1-0-alkyl-2-acyl-sn-glycero-3-phospho-(N-acyl) ethanolamine) is another potential supplement which may aid in the fight agains solid tumour cancers like adenocarcinoma.

PNAE activity is based on the differences in metabolism of ether phospholipids in healthy and cancerous cells. Healthy cells carry the enzyme alkylglycerolmonooxygenase that cleaves the PNAE molecule. The resulting fragments are used for biosynthesis of lipids and phospholipids. These form an essential part of the cell membranes. This enzyme is absent or inactive in tumour cells. This leads to the accumulation of PNAE inside the tumour cells causing their destruction while healthy cells remain undamaged.

PNAE’s second method of action is the inhibitory effect on the protein kinase C (PKC). This protein appears in tumour cells in elevated concentration. PKC affects enzymes that play an important role in regulating cell proliferation. Its method of action is thus similar to tamoxifen, adriamicin and calphostin, but without the toxic side effects.

In addition, PNAE has been shown that it can also stimulate the immune system.

PNAE was developed and is produced in the Czech Republic. It is marketed as a supplement under the brand OVOSAN. Its available in most pharmacies there. There is also a russian distributor which delivers world wide I believe.

PNAE is extracted from egg yolks.

I started taking a high dose of the phospholipid PNAE this week. 3 capsules 3 time a day, morning, noon and night. At roughly $900 for a two month supply, its not a cheap supplement however.

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Hard Decisions

This week I made one of the hardest decisions I ever had to make. One of those potential life or death choices. Chemotherapy is what is currently keeping me alive, but its a double edged sword. The longer you are on it, the more damage it does to your immune system and other organs. Its also only a short term solution too, as eventually cancer cells mutate, making chemotherapy ineffective. This can happen in as little as 6 months and I already pretty much failed my first line FOLFOX6 treatment, after just 5 cycles.

The aim of my chemotherapy is palliative only, with a slim hope that if it works well enough to reduce my mets, I may be eligible for surgery. Surgery is currently considered the only curative path for mcrc. The chances of this in my case, I have been told is very slim indeed. I am also well aware that with the extensive tumour load that I have, chemo is currently keeping me alive and I have already experienced how quickly ones health can deteriorate within just a few weeks.

So, back to my decision. My decision is to stop chemo after the 6th cycle of FOLFIRI, at the end of March. I decided to pack up and move to Germany for 6 months to seek cutting edge immunological treatments that are simply not currently available in Australia.

I already booked and paid for my flight. Its not cheap however, with the cost of around 50k euro per month for daily, intensive treatments. Luckily my family is very supportive and selling the house should cover the bills.

My plan is to try New antibodies like Removab, Debdritic Cell therapy, oncoviruses and other immunological treatments. This was always my plan from the day I was told that there was no cure for me, however Peter Trayhurn’s (Just google him if interested) recent success with similar procedures has provided the inspiration to follow this course of action sooner rather than later.

Is it the right decision? I don’t really know. What I do know however, in my case I have to follow the path less travelled as there is no light at the end of the tunnel otherwise. Time will tell.

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Tumour Devascularization

20130218-184901.jpgDevascularization, also know as Devitalization was a promising cancer treatment practiced in the Czech Republic, but is now illegal. Despite this fact, the procedure is becoming the standard form of treatment for cancer in veterinary medicine in the Czech Republic, with most animal studies and in fact most vets reporting a better than 80% cure rate. It is a very interesting story.

A Czech surgeon Karel Fortyn, was operating on a wounded soldier in the 1950’s. When he opened him up, he discovered extensive bowel cancer. Not being able to help the soldier, but not wanting him to bleed to death, he tied off all blood vessels going to a tumour and closed the patient. He did not expect him to survive.

The soldier not only survived, but 4 months later there was no sign of his cancer. Only fibrous tissue remained where his tumours used to be. Dr. Fortyn spent the next 40 years researching this phenomena, mostly on animals, but he also treated 20 or so human cancer patients. In his case studies, he reported 100% cure rate. Unfortunately his records were not kept up to today’s standards.

In the 1990’s about four other surgeons started to perform the devitalization surgery and it is estimated that over 800 patients underwent this procedure, with many reports of full remission.

In 2000, the procedure came to the attention of the local media. This generated a huge public interest and as a result, the government agreed to setup a clinical trial. The clinical trial involved 56 terminal patients. Most surgeons had reservations and feared septic reactions from necrotic tumours and chunks of colon being left in situ to necrotize. The trial disproved those fears and none of the 56 patients developed complications or a septic reaction due to the surgery. The trial however did not show any benefit to patients.

The trial was widelly criticized because based on Dr. Fortyn’s research, the procedure needed a healthy immune system to work and terminal patients who underwent several lines of chemotherapy had little immune system left. The government promised a second, more objective trial, but this never eventuated. Instead, the Czech Government banned devitalization and threatened to prosecute any surgeon who performed the procedure. Considering that the trial did not kill any patients, the severity of the Governments response is mind boggling. I don’t usually buy into big pharma conspiracy theories, but one has to wonder some times, especially since it has been shown to be so effective in virtually all animal species,

The Science

Studies have shown that tumours that die as a result of devascularization are stressed and express various proteins on their surface. They die due to necrosis not apoptosis and this stimulates the immune system. It has been shown that the immune response after devitalization is sustained and lasts for over 2 weeks. It has also been shown that the immune reaction translates to distant, untreated metastases.

Many animal studies have been carried out using this procedure. Most studies show up to 100% complete response after treatment.

Recently there has been a lot of research on laser ablation. Laser Ablation works by either heating the tumour to destroy it, or by cauterising blood vessels feeding the tumours, depending on the laser type. When the blood vessels are cauterised, this results in cell death due to necrosis, via a similar mechanism as devitalization. Not surprisingly most laser ablation studies are also reporting immune system responses which also translate to untreated distant metastases.

HMGB1 is released from necrotic cancer cells and immune macrophages. It strongly activates both Toll 2 and 4 receptors and the innate and adaptive immune systems. In addition to activating dendritic cells, which process tumor cell antigens, it also activates macrophages to release pro-inflammatory hormones such as TNF, tumor necrosis factor, the most potent anti-cancer immune hormone yet identified. HMGB1 is not released by apoptotic cells.

My Quest

I have been trying for several months to find a surgeon willing to perform the Devascularization procedure in Australia. I have spent a lot of time researching this procedure and gathered many documents and research papers, but most surgeons I had spoken to don’t even bother to read the summary and just dismiss it. Thus far no one is willing to step out of their comfort zone, but my search goes on.

Resources

http://www.iocob.nl/index2.php?option=com_docman&task=doc_view&gid=28&Itemid=90
http://www.pacienti.cz/devitalization.htm
http://www.iapg.cas.cz/uzfg/index.php?p=organizace&id=11&site=en
http://www.devitalizace.wz.cz/de/deFort83.htm
http://www.devitalizace.euweb.cz/de/Devit-3tables.htm
http://www.translational-medicine.com/content/9/1/83
http://en.wikipedia.org/wiki/Autologous_patient_specific_tumor_antigen_response

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