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I had nightly fevers in the 38.5 degrees Celsius range for over six months now. A fever can be caused by infection, by the immune system fighting the cancer, or by the cancer itself. A long term fever such as this will not be due to infection, and I doubt that its due to my immune system fighting my cancer either. I am pretty sure that my immune system is quite ignorant as far as my cancer is concerned.

This leaves the last option and I am convinced that my constant fevers are due to tumour activity. Recently I found the most credible theory that explains the causes of tumour related fevers.

In cancer cells, mitochondria, the cells power factories are damaged. This is why cancer cells switch to fermenting large amounts of glucose inside the cytoplasm, as mitochondria can no longer meet the cell’s energy needs. In some cancers, the mitochondria get de-coupled from the cell and instead of producing ATP, the energy molecules healthy cells usually use, they start producing heat directly. This is the same mechanism used in brown tissue which heat the body. Where as in brown tissue the production of heat is regulated, the excess heat produced by cancer cells is what causes the fevers.

Now here is where things start to get interesting. A few days after starting my ketogenic diet, the nightly fevers stopped. The lack of glucose appears to have a positive effect on the cancer’s metabolic pathways.

Three days before my next Chemoembolization procedure I decided to break my ketogenic diet and I carbed up to replace my glycogen and glucose stores. I believed that I would be better able to handle the procedure. In hind sight that was a mistake.

The same day I broke my diet (I had a large chocolate thick shake at McDonald’s among other things), my daily fevers made a comeback with a vengeance, reaching 39.6 degrees Celsius. Day after my TACE procedure I resumed my ketogenic diet, and four days later the fevers stopped again. The timing corresponded perfectly with reaching ketosis.

From these observations I am now convinced that a strict ketogenic diet should be on every cancer patient’s menu. But don’t just take my word for it:

Dear Mr. renw

Dr. Gerhard Siebenhüner

At some point you realize that there is no point fighting the inevitable, and that the only sensible option is just to give up. I reached that point last month.

If you have been following my blog, you know of my struggle to save my infected chemo port. Twice I thought I had the battle won, but always the infection returned. I had several severe septic reactions while accessing my port leading up to TACE #4, and that is when I had made the decision to finally give up the struggle and have the port taken out.

The mess with the last Chemoembolization just made this all the more urgent and the port was removed at the Freudenstadt hospital. I really missed the port. My veins were not in the best shape and it usually took multiple attempts to hit one with a cannula. Soon I learned which nurses were the most skilled at this and I started to seek these out. Ok, its only needles, but I have this psychological phobia where these are concerned. Though I must admit, I managed to sit through 3 failed attempts which 3 months ago would not have been possible without fainting or throwing up. Progress at last?

Without a port some of the IV’s like ALA or Vit C are quite harsh on the veins and it was actually quite painful as these went in.

I got a new port a week later and once it healed I was back in business. After three weeks of cannulas it was quite a relief. Now just to make sure I don’t get another infection. I have become quite anal about following strict aseptic procedures while accessing my new port and use extra antiseptics. I think the nurses will not like me very much, as no one likes to be told how to do their job, but tough. I am not going through this again if I can help it.

This is a long story and I am starting at the other end, but Its the the most current and if I feel up to it, I’ll fill in the significant events leading up to this week later.

I arrived at the Hallwang Oncology clinic four days early, having cancelled TACE #5 with prof. Vogl. The reason for the cancelation was the preliminary acceptance into an ALPPS trial in the Czech Republic. (That in itself is one hell of a story, but more on that later.)

The plan for this Hallwang stay was simple. No liver directed therapies like Mytomicin or Removab, just a gentle week of liver and immune therapies to prepare my body for the complex liver surgery. What could go wrong right? (And the answer to that question, considering that it is me we are talking about, is pretty much Everything).

I arrived at Hallwang still very bloated, with high bilirubin levels manifesting in the yellowing of my eyes. I still had not recovered from the last Removab treatment and bilirubin had not been draining into the digestive system as it should. This causes pale yellow almost white stool and dark orange urine as the kidneys struggle to clear it from the system. I had hoped to get this fixed with liver support IVs at Hallwang.

The first day’s blood test showed high CRP (measure of inflammation) and because my liver had been swollen and sore as well, the Hallwang doctors deducted that I still had a liver infection and prescribed a three day course of antibiotics. I was not happy about that as the chronic bloating I now have I developed after the last round of antibiotics and it only just started to get better. As I expected the bloating got much worse again soon after the new antibiotic course was started and I was miserable.

I was given various drugs and preparations to treat the bloating symptoms, (with little help or relief), but what I really wanted was to find and fix the cause. I knew it had to be either a bacterial, yeast or fungal infection of some sorts. So I pushed for more tests. The results eventually came back and helicobacter pylori was found in the stool and blood. The treatment prescribed was a 7 day course of antibiotics. The doctors however ignored the Clostridium Defficile infection that had been found a few weeks earlier and giving antibiotics to treat the helicobacter could have been a recipe for disaster had it still been in my system, which I thought likely. I brought this to the Doctor’s attention, they did some more research and the antibiotics were changed to also account for Clostridium. You really need to be on the ball and question everything.

During my last stay at Hallwang, I had the silly idea of having my blood tested for heavy metals. This decision would now come back to haunt me. What they wound was a high level of Aluminium in my system. Almost ten times the normal upper range. I had no idea where this came from, but was told that with Australian patients they see this quite often and they believe it is in the local water. I personally think Australians in general use more antiperspirants than the europeans as is quite evident in any public place on a hot summer’s day. But whatever the source, a round of EDTA chelation therapy was recommended and I had it the next day.

The chelation therapy consisted of two large (and I mean large) volume infusions of EDTA and various minerals to replace those that the chelation will leach out along with the heavy metals. The first sign that something was wrong came during the night. With the volume of infused liquids, I expected to spend half the night passing urine, as I usually do after heavy infusion days. This time there was nothing. I woke up feeling much more bloated than before, but I did not connect the dots at that time.

The day after the bloating got much worse and my thighs swelled up as well to maybe 3 times the usual size. I weighed myself in the morning and discovered that I was 8 kilograms heavier than I should have been. I connected the dots then and had an ultrasound done. It pretty much confirmed what I suspected already. Ascites with at least 7 litres of liquid in my peritoneum. Combine that with the bloating and the swollen liver, I was one miserable pregnant whale. I can’t say whether this resulted from the chelation, or whether it is just my liver failing, but I don’t believe in coincidences. The treatment prescribed were diuretics to try and expel the liquid. That did not work, and the next morning I woke up (morning for me has become 3am), things were worse and I gained another kilogram of weight.

At this point I could not bare things any longer and a puncture was planned to drain the liquid. It seemed simple, stick a needle in, drain 6-7 litres of fluid and you end up with instant relief. The danger however is piercing the colon in the process. That would be bad, very very bad. With my luck, you can probably imagine already what happened.

Well it didn’t happen, but I got no relief either. The bacterial bloating I had also been suffering from had distended my colon. It was very close to the walls and there was very little space to insert the needle to access the fluid safely. The doctor had a go and punctured my abdomen, but got concerned (or scared) and aborted the procedure after the initial puncture yielded no fluid and she did not dare to go deeper. That was maybe a good thing, but I really needed a solution especially since my liver surgery is due in a week and the ascites put the surgery in doubt. I was given a horse dose of diuretics, but again these had little effect on the ascites and I continued to be in pain and miserable. I don’t like pain killers, but I had to take them daily now in order to get just a few hours sleep.

The following day things did not improve and I had to leave Hallwang as was due in the Czech Republic for surgery prep. I was given an elephant’s dose of diuretics and a urine bottle for what I expected to be a 4 hour drive to Plzen. This turned into a 7 hour nightmare which I will not go into. So this is where I am now, at a hotel in Plzen, the half way point on my road trip to Ostrava. It is 3am and the bloating and pain make it hard to sleep. I have a five hour drive still ahead of me, and am really hoping that the traffic will be better. The good news is that the diuretics did help a little bit, so I will continue to take oral diuretic tabs and hope that the ascites clear up on their own. I have 5 days left to get these under control.

Other treatments while at Hallwang included a stem cell injection to help my liver, hormones to try and reverse my cachexia and my least favourite, dexamethasone to help with the liver swelling.

To summarise, this time I am leaving Hallwang with a 7 day course of 3 different antibiotics to treat my gastro issues. I am taking strong diuretics daily. I am still bloated from gas, I have at least 5-6 litres of fluid due to ascites, my liver is swollen and painful. Also suffering from cachexia, having lost most of my muscle mass now. My bilirubin levels took another dive, reaching 3.2, the highest level I ever had. What’s next?

Last month I was thrown two potential lifelines. Firstly I found a surgeon willing to do a colon resection using Dr. Karel Fortyn’s devitalization/devascularization method. I blogged about this procedure in the past where I went into a great deal of detail, but to summarise:

Devascularization involves firstly resecting the colon. The difference is that the veins feeding the tumour are ligated and both the tumour and the resected colon section are left inside. Starved of its blood supply, the tumour necrotizes. This stimulates an immune reaction capable of clearing distant metastasis. This reaction lasts several weeks.

I should add that the procedure has been banned in the Czech Republic, but is used to this day with great deal of success in veterinary since. The surgeon is taking a great personal risk, but believes in the procedure and continues to offer it to patients. I had a meeting with the surgeon and an operation was scheduled pending some tests.

The second potential lifeline came a few days later quite by chance. While I was in Germany, my wife came across a news story about a new revolutionary liver surgery that had just been performed, also in the Czech Republic. She sent my medical records to the hospital and a few days later she received a phone call that I could be a potential candidate for the surgery. When she told me, I realised straight away what it was. It was ALPPS (Associating Liver Partition and Portal vein ligation for Staged hepatectomy). I had my eye on this procedure for over 8 months and talked to several surgeons about it, but to be accepted into this trial was a big deal. Straight away I changed all my treatment plans in Germany to be able to meet the surgeon.

Although I do like the Devascularization surgery, its success is based on immune system response. This works best with low tumour load, so really the choice was simple, although ALPPS is a far more risky procedure. The plan is thus to try and reduce my tumour load in the liver, then follow it up by Devascularization in perhaps 6 months time.

The meeting with the surgeon went well, and the ALPPS surgery date was set for the 9th of October. The surgeon is able to operate because he found a 7% section of healthy liver tissue in the left lobe next to an artery. This is just enough to potentially work with, but I was told that this is a major surgery with 8% average mortality rate and that I am by far the worst case they ever operated on. I didn’t give it a second thought and signed up for the trial. In my case, it will be a 3 stage resection, where typically it is done in two. This means a total of 3 surgeries weeks apart. My chances of survival depend solely on how fast my liver will regenerate after the surgery. It can take as little as a week, but they had a case where it took 6 months. With the little liver I have left, a week means I live, a month or more and I don’t.

The operation is far from certain however. If any micro mets are found in the peritoneum when they open me up, they will not proceed. Also my health has deteriorated in the last 2 weeks and I developed ascites which may also put the surgery in question. I will find out on Tuesday.

At the moment I am just so furious. I consulted with two liver surgeons in Australia about this very procedure. Both said that they were familiar with it, and both told me that I was not a suitable candidate as I did not have enough healthy liver left. What they failed to tell me was that being familiar with the procedure meant that they knew about it, not that they actually performed it. So rather than to admit that they were not qualified to provide advice, they applied their knowledge of a standard resection I suspect. Damn their egos. Based on those opinions I stopped exploring the ALPPS option. That was my biggest mistake as I was in a much better shape for such surgery at that time. Now my liver is failing, I am turning yellow, have cachexia and ascites. But I still have hope that the surgery will proceed and that I will end up with a fully regenerated liver within 6 weeks. It just has to work.

The fluid buildup due to ascites is becoming unbearable, so I decided to go to hospital a day early in a hope of a solution. I got none. I was told that draining the fluid would do more harm than good and that the fluid would return within 24 hours. At least its not a barrier to my liver surgery which I feared the most. I spent the last week sleeping sitting up, but even that is now not possible and even the pain killers that I am on are no longer working. Luckily just one night to go.

I was checked into hospital today and had a series of various pre-op tests. So far it looks like the ALPPS surgery will proceed as planned. The fun starts at 8:30 am.

I had another meeting with the surgeon, and he like me realises that my health is now rapidly deteriorating and that this is my last chance. I stopped all german treatments in preparation for this surgery, and that has taken its toll it seems. He will do all he can and throw in a few non-standard extras. Firstly stem cell therapy to try and speed up the liver regeneration and chemo perfusion in the peritoneum to try and control the ascites after the surgery. Both very experimental and not typically done in this country. In fact I will be the first.

Its not all good news but. I just received an email from hallwang that my last stool sample is showing a massive candida infection. Just great. Nothing that I can do about it now.

The ALPPS surgery will be a lot more complicated in my case and is expected to take 6 to 7 hours. If it goes well, I’ll have 93% of my left lobe removed and the liver that is left, will need to quickly regenerate from the remaining 7%. No one knows what will happen when so much liver is removed, especially since with what I have now has started to fail already. I will be in coma for two days following the procedure, which is something I am looking forward to, as I have not had a good night’s sleep for weeks now. This is the first of 3 surgeries, and apparently the easiest and safest of the three. Comforting to know.

On Wednesday I woke up in intensive care. I was sore, but I was alive was my first thought. My second thought, something is not right as I looked at clock and the time showed only 1pm. Also I did not feel sore enough for such major surgery.

Soon after my wife came in and told me that when they opened me up, they found 10 micromets, 1-2mm in size in the peritoneum and the ALPPS surgery did not proceed for that reason.I pretty much figured all of that out for myself, but was still devastated. I was warned about this possibility, but I did instruct the surgeon to proceed with surgery even if micromets were found. Again too much red tape and regulation it seems.

The positive outcomes were a drain to deal with the ascites fluid buildup, and they took 3 biopsy samples to send to dr. Nesselhut for future dendritic cell priming.

The next step I was offered was Removab injected peritonealy to try and deal with the ascites issue. I have been in a Czech Hospital for 5 days now, to recover and waiting to see if Removab can be ordered. (The food is terrible btw.) As it is not approved in this country this is proving to be more difficult than the local oncologist thought, so am considering a trip to Germany for this. I should know later today.

I have still not given up on ALPPS, just need to get creative.

The drain that was put in is making my life miserable too. It is seeping from the side which they fixed by putting in an ostonomy type bag over it. Not the most comfortable thing to do on a fresh wound. The drain line also keeps getting clogged all the time. Its draining about 2 litres each day, but they keep pumping IV electrolytes into me at the same rate so it seems self defeating at times. Bad news is that the fluid drained contains lots of protein as well and this is not as easy to replace.