Desperate Times

Posted on May 21, 2013 by Ren

20130521-073143.jpgAs the saying goes, desperate times call for desperate measures and I have reached that point in the fight to save my infected chemo port. But I get ahead of myself again. Lets pick things up 10 minutes after my last blog post.

I spent the last week at Duderstadt and the entire week of immunotherapies there culminated in the injection of a dendritic cell vaccine. The dendritic cells were primed with a Newcastle Disease Virus, which my cancer cells had already been infected with. The aim was to have the dendritic cells recruit other white blood cells to help fight the cancer. 10 minutes after I finished my last post, the side effects kicked in. Chills, fever and an overall feeling of weakness and fatigue. Luckily there were no surprises this time and the flu like symptoms were exactly as described. I was not feeling well enough to have dinner, so ended up having an early night.

The following morning brought an interesting development. My infected port was noticeably better. I did not know whether to be happy about this or to cry. I realized that all the stimulation of the various leukocytes with interleukin 2, zometa, etc. in preparation for the dendritic cell activation, may have come to naught. If the white cells were hijacked and recruited to fight the port infection instead of my cancer, all the effort and the expense would have been wasted. I am just hoping that there were enough white cells to go around.

I left Duderstadt after breakfast and drove to Ostrava to see my family. The original plan was to spend the week at a Prague clinic getting daily IVs, but with my port still out of action, I decided to take a week (maybe two) off.

I may have been a little too optimistic about my port however. I was also on antibiotics and the day before I finished the course, the pain and swelling returned. I was so close, but unfortunately I came the full circle only to arrive at the beginning. The day after that the pain got much, much worse and I could not even wear a t-shirt, as the fabric rubbing on my skin felt like razor blades.

So there I was, an infected port that just refused to heal, in great deal of pain and me being too stubborn to simply have it removed. It was time for plan B, so I stopped eating and drinking.

For those familiar with my blog, you have probably realised that my radical plan B was another dry fast. In other words, no food or water for at least 10 days. If you think going ten days without water sounds crazy, I thought the same, but I lived through it before and I am still here. 🙂

Why a dry fast? Well, intuition is a part of it, but its also based on observations made during my previous one. What I noticed then, was that virtually all the acne I had from chemo cleared up. Secondly, I noticed that all wounds, nicks and scratches healed much quicker. I felt that the energy needed for digestion, was instead being spent to enhance the immune system. I also remember my qigong master saying that a dry fast creates conditions that makes it hard for bacteria and viruses to survive. If my theory was correct, then the dry fast would be the key to solving my port problems.

And now for the good news…

I have been dry fasting for two days now and my port is already showing a great deal of improvement. The swelling and redness have both gone down. Its still tender to the touch, but not quite as bad and I can wear a t-shirt again. If this continues, a few more days is all that I will need.

Posted in Dendritic Cell Vaccine, My Journey, Newcastle Disease Virus, Treatments | 5 Comments

MRI May 2013

Posted on June 9, 2013 by Ren

20130609-103918.jpgI always wondered just how aggressive my cancer is. Did it take years to grow, or just months? Until I stopped chemo, I had no way of knowing and no oncologist was able to provide an answer. They said that chemo could be keeping the cancer in check, or it could be doing nothing and the few millimetre monthly growth could just be the normal growth rate. There was no way to tell till now.

Before I left for Germany, I had an MRI done to use as a baseline. 19 days later, as part of the TACE procedure another MRI was done. As I made the decision to take some time off from all treatments to have more time with the family, I could now objectively compare the results. No chemo, no IVs, just some basic supplements. This gave the cancer a chance to show its true colours.

I already knew that the results were not going to be great as my CEA jumped by another 300 points to an all time high of 3308. I was however not prepared for what I saw. Even in my wildest dreams, I did not expect such aggressive growth rate. In the 19 days, all of my liver mets grew by an average of 15%.

Taking 3 weeks off from all treatments was a critical mistake. The up side however is that I now better understand the beast that I am dealing with.

Note: The illustration image is not current. Add 15% to the volume of all tumours (the darker spots) to get the true idea.

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MRI June 2013

Posted on June 9, 2013 by Ren

20130609-103918.jpgI knew that this MRI was going to be critical as the last scan showed a 15% growth across the board. This was without treatment. If the first round of German therapies worked, I should hopefully see a reduction in the tumour volume, or at least no growth.

However, It seems like luck is just not with me. Despite all the pain and effort of the preceding month, the MRI shows another 15% increase. (To get an idea what this means to my liver, look at the illustration image in the top left corner and imagine all the mets roughly 35% larger.)

But there is still a ray of hope. Firstly my CEA dropped from 3300 to 972, however because the test was done in another country (Czech Republic) and a different lab, its too early to get excited till I get some clarification. The test says >972 which could mean bigger than 972 but less than 973, or it could just mean bigger than 972, in which case it could mean anything. I will find out next week and will also get another CEA test done in Germany just to be sure.

Secondly, physically I feel better not worse. This is hard to reconcile with the significant growth shown on the scan.

I am hoping that there has been a great deal of tumour necrosis and that the increase in volume is due to inflammation resulting from healing. Next month’s MRI should tell more.

I am really dreading the next MRI as I can’t sustain 15% monthly growth for much longer. I am going to ramp up the therapies this month and throw more things at my little mutants.

Posted in My Journey | 3 Comments

Chamoembolization Round 2

Posted on June 9, 2013 by Ren

20130609-120530.jpgI had an appointment Dr. Pain (aka Prof. Vogl) for another TACE treatment in Frankfurt. The man is a true master at inflicting severe pain. In comparison, my root canal dentist, whom I previously held in high esteem on the pain scale, proved to be a mere amateur. Please don’t get the wrong impression however, I am not being negative in any way towards Prof. Vogl. As much as I hate it, I welcome the pain because to me it means that his treatments are having an impact.

Psychologically the second round with Prof. Vogl was much harder than the first. The reason was that I already knew what to expect, and if you saw my post on the first procedure, you will recall that it was brutal. An experience that for me re-defined the meaning of pain. It took a supreme effort of willpower to willingly climb up on his table again.

The procedure was very quick and efficient. Within minutes Prof. Vogl found his way to the hepatic artery. As expected, few minutes after the chemo drugs were injected through a catheter inserted through my groin into the liver, the pain began. Lots of pain. I was however pleasantly surprised. The pain never reached the levels I experienced during the first treatment and it went away altogether within an hour. I still needed lots of morphine, but compared to my first TACE, this was a walk in the park.

To get the maximum benefit, I had local hyperthermia just after the TACE procedure at a nearby clinic. This time I stayed overnight in Frankfurt, which gave me a chance to get some IVs as an outpatient and a second Local Hyperthermia treatment the following day before departing for Removab at Hallwang.

Posted in Chemoembolization, My Journey, Treatments | 1 Comment

Insulin Potentiated Therapy (IPT)

Posted on June 15, 2013 by Ren

20130615-100051.jpgThere were several benefits in visiting a new clinic in Frankfurt. Firstly I was able to get a local hyperthermia just hours after the Vogl Chemoembolization, and I discovered several new potential treatments. One of these, Insulin Potentiated Therapy or IPT, I had a chance to try the very next day.

IPT is by no means new, but it is still controversial. The problem is that very few studies have been done to prove or disprove its efficacy, and the administration of insulin can have serious side effects as the rapid drop in sugar levels can result in coma or even death.

Insulin acts mainly as a signal to liver and fat cells to convert glucose into fat for storage, but there is more to it. It also signals cells in general to increase their glucose uptake, it regulates the uptake of amino acids and has several other anabolic effects. Basically insulin opens cells up so that various external substances can pass into cells more easily. This is the theory behind IPT. Infusions or chemotherapy is given, and a shot of insulin opens the cells and ensures that these are able to pass through the cell membranes, thus increasing the efficacy.

IPT is quite expensive as far as infusions go, about 450 euro, excluding the cost of the infusions themselves. I assume the reason is the close monitoring done every 5 minutes after the insulin is administered. (I am very tempted to get some insulin and just give myself a shot after an IV course. Cost wise that would work out at just a few dollars…..but that’s just me and not something I advocate for anyone else to attempt.)

My insulin shot was a non-event. I had various clinic nurses come and check me out, looking at me as if I was a freak. They expected some kind of reaction. Weakness, feeling of dizziness etc. I felt absolutely nothing. In twenty minutes they gave up and I was given a huge fruit salad to replenish my sugar levels. I guess all the dry fasting, ketogenic diets etc. had prepared my body to deal with little to no glucose.

IPT on paper makes sense to me, however the high cost makes it prohibitive for daily use, but as they say, where there is a will, there is a way. 🙂

Now I did mention that I discovered several potential new treatments at this clinic (run by Dr. Siebenhuner) . The second one uses 2DG and has me quite excited, but more on that next time….

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Hallwang Tour of Duty

Posted on June 15, 2013 by Ren

20130615-123531.jpgAfter two interesting days spent at the Siebenhuner clinic in Frankfurt, I made my way to Hallwang. Hallwang is by far the most expensive of the German clinics, however they have very good doctors, its in the heart of the Black Forest so its in a great area far from the hustle and bustle of major cities and most important, they do REMOVAB.

Based on the disappointing MRI, I feel the need to ramp things up. I added DCA IV to my treatments. This I will be taking 10 days on, 10 days off. The break is important as DCA can cause neuropathy. Hallwang was gracious to supply me with DCA so that I can continue the infusions after I leave the clinic. This is not something most other clinics are willing to do. I also get several artemisinin injections and I will be adding quercetin to my supplements. I am also considering going back on Avastin.

Removab is also on the menu, but this time I am going to try and squeeze in two treatments as long as my liver can handle it.

The second Removab cycle was much better than the first I had a month ago. No major liver swelling, so no pain. Just rather pleasant flu like symptoms. (Well pleasant in comparison to other treatments like TACE or chemo). I also figured out how to beat the extreme chills and uncontrollable shaking, which is probably the worst Removab side effect. When Removab kicks in, the body tries to rapidly raise its temperature. The severe chills and shaking help the body to do this. So the the trick is to elevate your body temperature ahead of the curve. Best way to do that I found was lots and lots of very hot tea. Worked like a charm and I had no chills or shakes. I was again very surprised how well this round went compared to the hell I had to endure last time.

My first Removab on this tour was on Saturday, the second was just 3 days later on Tuesday. They doubled the dose from 5 to 10 micrograms on the second round too. Its still not a lot, but it sure hammers the liver. Even the double dose was quite tolerable and my hot tea trick worked like a charm and I again avoided the chills and shakes phase. This time the very light stool and dark almost orange urine that usually follows the removab treatment lasted much longer. Liver enzyme tests as expected were off the charts as well. It means that liver is not working correctly, bilirubin is not excreted in the bile (resulting in the pale stool) and the kidneys have to work overtime to clear it from the system. I spent the rest of the week on IV’s 6 hours a day trying to get the liver back to normal.

I think they overdid the Hepa Merz IV on Tuesday and I lost my lunch. Almost made it to the toilets but not quite, so I felt sorry for whoever had to clean up the mess in the corridor. Hepa Merz is one of the key support treatments and is given daily. It helps damaged livers remove ammonia. The problem is that if the IV is given too quickly, it causes nausea and vomiting. And I guess it was given too quickly.

At the end of my stay I got 3200 euro worth of IVs to take with me. Last month I took a 2 week break from all treatments and this may have been a mistake. This month I will continue with daily IVs while at other clinics and at home. The supply I got will last 3 weeks. Seems like at the end of this month, I will be a fully qualified nurse as well (I have been paying very close attention to the nurses, learning all the methods and procedures and I believe I could already hold my own with the best of them.) 🙂

Just like last month, my Haemoglobin took a hammering and I again had to have a transfusion. I got two pints of whole blood. Hy Haemoglobin is below normal all the time courtesy of tumour anemia. Basically the cancer cells release cytokines which impact the bone marrow. I guess they really don’t like an oxygen rich environment. Removab just makes it worse, hence the need for the transfusions.

I depart Hallwang tomorrow and head to Duderstadt for the next round of immunotherapies with Dr. Nesselhut. I wonder what adventures next week in Duderstadt will bring. I am sure that it will not be dull.

Posted in DCA, My Journey, Removab, Treatments | 2 Comments

Dichloroacetate (DCA)

Posted on June 17, 2013 by Ren

20130617-110020.jpgDCA is a small synthetic molecule that can kill cancer cells. To understand how DCA works, it is important to also understand the metabolism of cancer cells.

The primary energy source of both cancer and normal cells is glucose. In a normal cell glucose is mostly oxidised in the presence of oxygen to release energy. This happens inside the mitochondria, which are the cell’s power plants. In cancer, the mechanism is very different. Cancer cells have switched off the mitochondria and instead of oxidising (burning) glucose, they obtain their energy through a process called glycolysis. In other words, cancer cells ferment glucose to meet their energy requirements. This is a very inefficient process and is why cancer cells need so much more glucose than ordinary cells. The fermentation process does not need oxygen and this enables the cancer cells to thrive in hypoxic environments, such as those that exists inside tumours. The key part however is that by switching to glycolysis, the mitochondria are disabled.

Mitochondria

Mitochondria have their own DNA and are believed to have been assimilated by cells early in our evolution. It is a symbiotic relationship. Mitochondria are very clever and are packed with various sensors. When a mitochondria detects that its host cell has become abnormal, it pushes the cell’s self destruct button causing apoptosis (programmed cell death). In other words the mitochondria commits suicide, killing the cancerous cell in the process. This does not happen if the mitochondria are disabled.

Mitochondria use the byproducts of glycolysis for energy production, pyruvate being one of these. An enzyme called PDK (pyruvate dehydrogenase kinase) regulates the flow of pyruvate into mitochondria. If PDK is active, pyruvate is blocked from entering the mitochondria and the cell is forced to use glycolysis to obtain its energy. In cancer cells this happens even though ample oxygen is available. It is no surprise that most cancer cells have active PDK. Active PDK disables mitochondria function and forces glycolysis. This is where DCA comes into the picture.

DCA Method of Action

DCA blocks the PDK enzyme which forces cancer cells to revert back to glucose oxidation as their primary energy source. This does not make cancer cells happy as it re-activates their mitochondria. When the re-awakened mitochondria realise that they are inside an abnormal cell, they push the cell’s self destruct button. The net result can be massive cancer cell death.

Side Effects

DCA is a small molecule that can pass the blood-brain barrier. This can lead to a number of neurological side effects. The most common is peripheral neuropathy. It can also can cause other nerve, kidney and live damage. One study shows that long term DCA use can itself cause cancer, but then again the same can be said of virtually all chemotherapy agents.

One important thing to note is that one study has shown that some cancer strains can actually benefit from DCA increasing the cancer growth rate.

DCA Dosage

There is very little research to determine the optimal dosage strategy of DCA. Alternative clinics using the DCA therapy usually recommend a ten day on, ten day off cycle. This is to minimize the side effects.

Personal Experience

I started daily DCA IV’s last week. So far I have no information on its efficacy, but I have not experienced any side effects thus far. I am taking 1000mg per day as an IV.

Posted in DCA, My Journey, Treatments | 4 Comments

Crossroads

Posted on June 18, 2013 by Ren

20130618-211706.jpgI have learnt a great deal about my cancer in the past two months. I know that it is extremely aggressive, growing at 15% per month on average. I know that a mutation affecting the PI3K pathway makes attempts to treat it with dietary changes futile, and MDR1 gene expression means it has multi drug resistance, meaning that chemo is not overly effective and neither is high dose vitamin C.

The last MRI has shown that I have about 15% of healthy liver left. The human body needs a minimum if 14% to meet its basic metabolic needs. It does not take a genius to work out that with a 15% monthly growth, my skin and eyes will be turning a nice shade of yellow within a month or so.

I am not giving up. I have ramped up my treatments, and am looking into other hardcore liver therapies, even a liver transplant. As you can see I have two very good reasons for not giving up.

At the same time I am re-evaluating my priorities and am heading home next week. I’ll take a few days off from treatments and take the kids camping. Always wanted to do that, but they were too young at first and then there just never seemed to be enough time. Problem is I don’t even own a tent, so have lots of shopping to do first. Hopefully the kids will like it as much as I did when I was growing up and hopefully it will leave a lasting childhood memory for them. Should be fun. My secondary aim is to turn them into mini pyromaniacs. (Don’t ask, its a family thing. We like our bonfires.)

For me this month is critical and I have to get the liver mets under control, so I am ramping up my treatments. This month I will have:

2 Removab cycles
Chemoembolization with Vogl
13 local hyperthermia sessions
Newcastle Disease Virus
Dendritic Cell Vaccine primed with NDV
Thyroid potentiation therapy
Gamma-Delta cell stimulation with zometa.
Lots of daily IVs mostly for liver support and detox.

This is all the old stuff, new for this month:

20x Dichloroacetate (DCA) IVs
Dendritic Cell Vaccine primed with a tumour antigen
Donor Gamma-Delta cell transfusion
Phoenix Tears
IPT

and in a few weeks I will also try 2-deoxy-d-glucose, just need time to organize it.
I am throwing in a few herbs like dandylion root just for good measure, a few new supplements like ginistein, artemisinin and quercetin.
I may also go back on to Avastin.

Normally I would not do so much at the same time, but I am out of time.

At the same time I pursuing several liver directed therapies. I like the Alpps procedure, but I fear that I have not enough liver left for the surgery, but have contacted three liver surgeons to get their opinion. I see no reason why they can’t put me onto a liver dialysis machine till the resected liver segment regenerates. Just thinking out of the box. Typically these are used to keep people alive while waiting for a liver transplant.

Singapore is probably the only place where I am likely to get a new liver, so started to make some enquiries there. This is my plan Y.

Finally an update on my infected port. I used it for about two weeks and I thought I had the battle won, but it got worse again. I’ll spare you the details, I can just tell you that the catheter leading from the port into the vein is light blue in colour. I should NOT know this! I can’t afford the time to get it out now. It will just have to do.

Posted in My Journey | 5 Comments

Almost Perfect

Posted on June 20, 2013 by Ren

20130620-080822.jpgHad an interesting appointment with Dr. Nesselhut Junior yesterday. He is one of the doctors managing and administering my Dendritic Cell vaccine therapy in Duderstadt.

We went over special immunological tests that were done by a Berlin lab during my last month’s visit. These tests looked at the state of my immune system in great detail. It looked at all the different white blood cells, their counts, activation states etc. a very complex report, the likes of which I have not seen before. The longer I am here, the more I realise how much cancer patients are missing out on in Australia.

First thing Dr. Nesselhut did, was to double check the name on the report, to actually confirm that the results were really mine. I think he found it hard to believe. His comment was that everything on the report was normal. For a late stage cancer patient that apparently does not happen, as typically the immune system is out of whack all over the place. Usually they will try to offer therapies to re-balance the immune system, but with me there is apparently nothing that they can do. Seems like yet again I have to be an exception rather than the rule, but in this case I assume that is a good thing.

The report was almost perfect with only NK (Natural Killer) cells being on the low side, but still within the normal range. Go figure.

DC Vaccine

Two days prior to my appointment, the nurses had been infecting me with an NDV virus (No its not an STD), and today was time for my next DC Vaccine shot. (great more needles). Just like this month’s Removab and TACE, the vaccine was surprisingly easy to take. Last time I felt as sick as a dog, could not eat and had bad flu like symptoms lasting about 6 hours. This time nothing. I did feel a little bit of nausea in the evening, but I don’t believe that this was related to the DC vaccine. How unusual. I don’t know if that is good or bad.

It gets better. My infected port was not in a great shape. The scar left over after the implant surgery had opened up, and had been oozing blood and pus for the last 4 days. It refused to heal, and the hole was deep enough that it exposed the port and the catheter. (That’s how I now know that it is light blue in colour, which is way too much information.) To my surprise I woke up in the morning to find the port looking much better with the oozing hole closed over and apparently healing nicely. This is not a coincidence. After my last DC vaccine, my infected port also improved greatly.

I think I am onto something here. The DC vaccine may or may not do anything for my cancer, but it certainly seems like a miracle cure for infections. Something to file away for future reference.

The day had more to offer, but I’ll save that for the next post…

Posted in My Journey | 1 Comment

Out of the Box and into a Rat

Posted on June 20, 2013 by Ren

20130620-075838.jpgYesterdays conversation with Dr. Nesselhut revolved a lot around the efficacy of the DC Vaccine treatment that he is administering, in particularly the priming of the DC cells.

To explain, dendritic cells themselves do not fight cancer, or other infections. They are mere messengers. A dendritic cell exposed to a foreign antigen will present the antigen to other types of otherwise dormant white cells it comes into contact with. This activates the cells and they then go forth, seek and destroy anything that matches the antigen.

My current DC therapy involves infecting my cancer cells with the Newcastle Disease Virus. The virus, deadly to birds but safe in humans, readily infects cancerous cells while leaving normal cells alone. The dendritic cells are then exposed to NDV antigens. Once injected, the DC cells train the immune system to recognise the NDV antigen that is expressed on the surface of infected cells. These are then destroyed. That is the theory anyway.

As the last DC vaccine did not seem to do much, we discussed priming a second batch with P2X7 in addition to NDV. (This by the way is an Australian discovery. Makes me feel sad that I have to travel to Germany to take advantage of this research.). Basically P2X7 is another target that DC cells can be primed with. Colorectal cancers commonly express P2X7 on the cell surface and once primed, the immune system will target these as well. Not all colorectal cancers express P2X7 however, but getting tested for this marker is not easy and takes time. So for me this is basically a shot in the dark, but still worth a try.

What I really want is to get the DC Vaccine primed with my own tumour cells. This is by far the most effective based on my research and Dr. Nesselhut agrees with me. The problem is getting a big enough tumour sample. A traditional needle biopsy I was told does not yield enough tissue and you need a sample roughly the size of the tip of your thumb. Only realistic way to get such sample is after resection surgery, or to perform laparoscopic procedure to get a chunk of tissue. Not keen on poking holes in my tumours however, as that is a great way to encourage new mets to form.

Growing cancer cells in a lab is notoriously difficult so not a realistic option either. I know that researches do this all the time, but they use immortalised cell lines and that is different.

But I like to think out of the box so I propose this idea: Lets get a rat and inject him with a few of my tumour cells. Within a few weeks the poor rat will have enough tumours to get a big enough sample that I need to prime the DC vaccine with. Nesselhut just laughs at this suggestion. Not that it would not work, he says he sees no reason why it would not, but then he starts to list all the rules, regulations and things needed to get the appropriate licenses. He concludes that it would take them about 20 years to obtain permission to do what I suggest. Yet it is so simple.

So as with everything else on the cuting edge, if you want it done, you have to do it yourself. Time to visit a pet store you think? I wonder if the kids would like a pet rat. :). But seriously, just need to find a research lab that can do this, then extract and freeze the sample. No one then needs to know where the tissue sample came from right?

ALPPS liver surgery is another example. I am told that I will not qualify for the procedure as I don’t have enough healthy liver left to be able to meet my metabolic needs after a lobe is removed. So what? Liver dialysis machines are used to keep liver transplant candidates alive while waiting for a new liver. My out of the box thinking says why not hook me up to one of these post surgery. It takes just 6 days for the liver to re-generate following ALPPS surgery and liver dialysis could easily keep me alive for 6 days. So far no response to my suggestion. I get the feeling that no one has thought of this option before. Why not?

Posted in My Journey, Treatments | 4 Comments