Week in Duderstadt

Posted on June 21, 2013 by Ren

20130621-200501.jpgAnother week of intensive immuno therapies and intense local hyperthermia treatments is over. The weather in Duderstadt was great and I feel better than ever, even though Prof. Vogl’s latest radiology report makes for some grim reading. I may not understand medical german all that well, but phrases like Grosse Progression are hard to miss. Still lets not dwell on that.

I arrived in Duderstadt on Sunday and started the first therapy with Dr. Nesselhut the following day. Pretty much the same routine as last time, with one major difference:

Monday – Newcastle Disease Virus, Local Hyperthermia
Tuesday – Newcastle Disease Virus, Local Hyperthermia
Wednesday – Dendritic Cell Vaccine, Interleukin-2 injection, Local Hyperthermia
Thursday – Zometa, Local Hyperthermia, Ozone
Friday – Zometa, Local Hyperthermia, Ozone, Interleukin-2 injection, donor gamma-delta cells.

Unlike last month, where I was quite sick with bad flu like symptoms, this time I had no reaction to the Dendritic Vaccine. Everything this month has been easier. Can’t explain it, but I like to think that this is a good sign and not a mere build up of tolerance to the treatments.

Friday (today), I received a transfusion of gamma-delta cells. This is new. These were harvested from a healthy donor, (most likely one of the nurses at the clinic, but they would not tell me which one) and cultured in a lab. Over 200 million cells were infused over about 40 minutes. So far no reaction to the gamma-delta infusion, though I feel a litle more tired than usual. I don’t expect an adverse reaction however as this is not typical for this treatment.

Finishing the day with 6 IVs that I am doing in the hotel room as I write this and tomorrow I go back home to spend a week with my family. I was planning on two weeks initially, but I don’t think that I can afford such a long break from treatments. I would like to also squeeze in 2DG this month. (This has me excited, but more on that next time.)

Posted in Gamma-Delta T-Cells, My Journey, Newcastle Disease Virus, Treatments | 6 Comments

Septic Shock

Posted on June 28, 2013 by Ren

20130628-144535.jpgOn Monday I drove to Olomouc to meet with an oncologist. Olomouc is a city an hour drive from our temporary home in the Czech Republic. The oncologist there is great, the first one that I can say that I actually relate to. Unfortunately just like all others, the only thing that he has to offer is chemo. This is no longer looking as bad however, and I may have to go back on it if the July MRI shows a further progression.

Did some blood tests, and drove home, leaving any future traditional treatment decisions after the next PET or MRI.

Maybe 20 minutes out of Olomouc, strange things started to happen. I started to feel very cold and was not able to get warm. Few minutes later I was shaking all over. These shakes were violent and
uncontrollable. It felt like a reaction to Removab, but I had my last dose 5 days ago and there should be no delayed side effects. The shaking was also much worse than anything that I had experienced with Removab, or ever before. Compared to these, removab was a walk in the park.

The violent shakes continued for at least 30 minutes, by which time I was totally exhausted. Luckily my wife was driving. I just wanted to get home, and had to stop her from turning the car round and going back to the hospital a few times. I could not imagine spending any time in an emergency waiting room, in the state that I was in. She was panicking, and I guess I can’t blame her as I was quite scared myself, though I tried not to show it. This was nothing like I had experienced before and I had no idea what was causing it.

I remembered reading the signs on the building as we entered the hospital few hours earlier. It said ‘Oncology’ and below it ‘Lung Tuberculosis’. I remember making an ironic comment on how clever it was to put Oncology and Tuberculousis patients in the same building. Somehow that image came back to me as I continued to shake violently on the passenger seat. I then realised that it was not just clever but bloody brilliant. If you subscribe to Dr. Coley’s theory and that of spontaneous remissions being the result of a secondary infection, it makes perfect sense. Any oncology patient lucky enough to catch tuberculosis, has a chance of a cure through spontaneous remission or a quick exit. Either way there is an upside, especially if one also considers the significant savings in treatment costs. 🙂

Finally got home and the biggest challenge was to get out of the car and into our apartment. That was very hard. Just when I thought I had it all under control, I lost my lunch. Great.

First thing I checked was my temperature. It was 40.2 celsius. I understood what was happening at that point in time. My body wanted to rapidly raise its core temperature and to control the shaking, I had to get ahead of the temperature curve. A hot bath and a few cups of hot tea and the shaking finally stopped. My temperature settled at around 40.7 degrees. I still had no idea what exactly happened, but I started to suspect my infected port. I was back to normal 4 hours later.

The next day, about an hour after starting my daily IVs I noticed that I was getting very cold. I straight away knew what this was and what was to follow. I stopped my IVs, made a pot of hot tea and jumped into a hot bath. This time I managed to stay ahead of the curve, and there were no chills or shakes. Within 30 minutes however, my temperature again climbed to the 40 degree celsius range.

As I was pulling out the port needle, I noticed a drop of pus that came out of the needle wound. This confirmed my port theory. It seems that a pocket of pus developed just above the port access membrane. When the port was access, this forced a drop of pus into the needle and inside the port, from where it was flushed straight into the blood stream. The result a septic shock.

I now have the means to induce a 40 degree hyperthermia at will, with zero cost. Its very tempting to just continue using my port in the same way. Seems like there is indeed a silver lining in every cloud. 🙂

Posted in My Journey | 5 Comments

Phoenix Tears

Posted on July 4, 2013 by Ren

20130704-181814.jpgPhoenix Tears have been touted as an effective alternative cancer cure, with enough anecdotal evidence for me to take it seriously. So what are Phoenix Tears? Basically its pure cannabis oil distilled from the broader leafed Indica strain. (The strain is important, as indica induces the deep relaxation state needed for healing, where as other strains may not)

I started taking PT last week and so far this is by far the hardest of all the therapies. THC is not my favourite drug. It never was. Every time I tried it, it made me feel dumb and antisocial. Not a feeling I like. I like my mind to be sharp.

The full protocol calls for an ingestion of 1 gram per day. That’s a huge amount and you have to build to this dose. The recommendation is to start with a drop half the size of a grain of rice and double the dose every 4 days.

This is exactly what I did (at least initially). I waited for well over an hour and nothing. I decided to push the envelope and trippled the dose, for a total of 2 rice grains worth. This is still insignificant compared to the gram dose mind you, but it was still a terrible mistake, one that I would pay dearly for. Soon after I started feeling sleepy, which is the expected side effect and I fell asleep.

I woke up several hours later to find the world extremely unstable. It was hard to concentrate on anything, very hard to talk, walk or do anything. Totally totally stoned. Well my body would not let me get off that easy deciding that it needed to purge these toxins. And yes that meant vomiting, lots and lots of vomiting. Needless to say I did not make the same mistake again and I am now up to 1 rice grain worth 3x per day. Unfortunately that experience now means that I can no longer ingest it in the normal way as the taste alone makes me heave so I had to be creative, but I am quite good at that.

As for the results, hard to say, but I think my liver is less swollen since I started, so it may be having some benefit. I also sleep much better than usual. But I definitely lost a big chunk of my IQ, which I hope is temporary. 🙂

Posted in Cannabis Oil, My Journey, Treatments | 2 Comments

Week at Home

Posted on July 4, 2013 by Ren

20130704-185406.jpgWhen I got back from Germany, the focus was the big camping trip that I hoped to take kids on. Went shopping, bought a small and practical 3 man tent weighing just 1.5 kg and some basic camping gear. Then this huge package arrives. A massive 3 room tent that sleeps 4-6, weighing 12.5 kg. Initially had no idea who sent it, and for quite some time it remained a mystery. Just knew that it must have been one of my blog readers. Thanks Axel, thought is much appreciated. Now need to decide whether to rough it, or go in tent mansion luxury. 🙂

Unfortunately heavy rain persisted all week, so there was no chance to go. Its on hold, so have to hang on for at least another month. Its good incentive.

Physically my condition has been getting worse daily. My nausea returned, liver has been swollen and eating started to become more of a challenge. Not liking the direction that this is going. Maybe I need to take more Phoenix Tears, then maybe I won’t care. 🙂

Treatment wise, have been continuing daily IVs done at home. Mainly DCA and lots of liver support stuff. I also got into Reiki and had these daily too. I found the sessions relaxing and quite helpful.

Posted in My Journey | 3 Comments

PET Scan – Jun 13

Posted on July 5, 2013 by Ren

20130705-132632.jpgHad a PET scan last week in Olomouc, and I got my results today. These scans have never been positive for me in the past, so I did not really expect much. The good news is… well actually there is no good news, so just the bad.

Seems like my little mutants ran out of real-estate in the liver and decided to venture forth to seek out new habitats to colonise. Not surprising really. Why stick to the overcrowded liver when there is so much space in the lungs.

I now have 2 brand new mets in the right lung, and a small met in the left. There is also a mention of small ascites in the pelvic region. Not good to hear, but I am not overly concerned about the new mets, as the liver is still my main problem.

Posted in My Journey | 2 Comments

2-Deoxy-D-Glucose (2dg)

Posted on July 10, 2013 by Ren

20130710-183051.jpg2DG is a funky molecule that I came across last month and have started taking it last week as an IV infusion.

2DG is a modified version of Glucose having a hydroxyl group replaced with hydrogen. The simple modification means that it can not undergo glycolysis, the fermentation step used by both normal and cancer cells to obtain their energy. In normal cells the byproducts of the initial glycolysis are burned inside the mitochondria, which are the cell’s power factories. This is where the vast majority of a cell’s energy comes from. Many cancer cells rely on the fermentation step only and as this is very inefficient, they require much more glucose to meet their energy needs. As a result, cancer cells soak up available glucose like a sponge to drive their relentless growth.

For all intensive purposes, 2DG has very much the same properties as regular glucose and is readily taken inside cells. As it can not be fermented or oxidised to produce energy, and because it is difficult for cells to expel it, 2DG accumulates inside cells eventually starving them to death or damaging them through increased ROS (reactive oxygen species) production.

So how will 2DG impact normal cells? Normal cells have a backup strategy. When energy can not be obtained from glucose, they can switch to a ketone based metabolism. This basically means burning ketone bodies (fats) instead of sugars. Most cancer cells are not able to do this, though they can be very adaptive and resilient.

The aim of this therapy is simply to feed enough 2DG to starve the cancer cells. I am currently taking 1g per day. I am trying to get the dosage increased to 6g, but am considering going all the way to 12g. Due to supply issues this has not been possible this month.

The possible side effects mimic hypoglycaemia. Dizziness, nausea, hot flushes, sweating etc., though at 1g I have not experienced any side effects. At higher doses (above 0.2g/kg) some animal studies reported significant instances of cardiac damage, so there are some serious dangers to long term use.

Posted in 2DG, My Journey, Treatments | 6 Comments

Siebenhuner Clinic

Posted on July 16, 2013 by Ren

I spent two weeks at the Siebenhuner Clinic in Frankfurt. Dr. Siebenhuner is a true maverick and if he practiced his style of medicine in Australia, I have no doubt that he would be in jail. Germany is probably the only western country where doctors can provide treatments they believe to be beneficial to patients, without too much interference from the local medical establishment. They also have access to drugs that if prepared by a pharmacist, can be used even if the drug has no formal approval. For cancer patients with no other options, this is a god send, as it gives you a chance to try alternate treatments at the cutting edge of science.

My treatments at Siebenhuner’s revolved around 2DG (2-deoxy-d-glucose), a fake sugar which acts like glucose, but can not be metabolised. The idea is to clog up the cancer cells with 2dg and starve them to death.

To make the treatments more effective, I combined them with daily local hyperthermia to the liver, and IPT (Insulin Potentiated Therapy).

Initially the supply of 2dg was an issue and I started on a low 1g dose. At the end of the second week this was upped to 5g. In the future I am looking at 12g per day. I have not noticed any side effects thus far.

My health during the first week of treatment was not great. I had a lot liver swelling, pain and constant nausea, as the swollen liver compressed my stomach. Eating became a challenge and my daily meals consisted of piece of bread roll and a small pickled herring. No idea why, but the pickled herrings turned out to be one of the few foods I could keep down. I lost about four kilograms which is bad news considering how hard it is for me to put on weight. Things changed dramatically after my next TACE treatment, but that is another story.

My next challenge is to get a reliable of supply of 2dg that I can continue to take while outside of the clinic. Dr. Siebenhuner has been very helpful in facilitating this, so if things go as planned I should be able to take 2dg daily for several months. I am also looking at sourcing some from china. The Siebenhuner clinic has now become a permanent fixture on my monthly clinic tour and I expect to return next month.

Resources

http://www.ipt-zentrum.de/home.html
http://www.hyperthermie-zentrum.de/home.html

Posted in 2DG, IPT, My Journey, Treatments | 2 Comments

TACE #3

Posted on July 17, 2013 by Ren

20130717-112302.jpgOn Thursday the 11th had an appointment with prof. Vogl (a.k.a Dr. Pain) for a third Trans Arterial Chemo Embolization (TACE) treatment. Lulled into a false sense of security by the last procedure, where the pain was almost bearable (with morphine), I willingly climbed onto Vogl’s operating table for the third time. The man lived up to the nickname that I had given him. The pain was exquisite. What can I say? The man is a true artist! A minute after the chemo agents were injected I was writhing in pain. Covered in cold sweat, shaking, griping the edges of the table while at the same time trying very hard not to throw up and move my leg. (That is bad when your femoral artery is cut.) It seemed like an impossibly long time for the morphine to kick in this time. I knew it would only take the edge of the pain, but anything that relieved the agony just a little was most welcome. They increased the pain med dose and eventually the pain became tolerable.

Usually the TACE procedure takes just minutes and goes very smoothly. This time was different and I spent at least twenty minutes longer than usual in the operating room while a nurse applied pressure to my groin. Under different circumstances this would have been quite pleasant. 🙂

I took a look at my groin area where my femoral artery had been cut just a few minutes before. That was a mistake. I’ll spare you the gory details, but needless to say I will not be sneaking peeks again. (As a Dexter fan, it reminded me of a scene from the show. Ok, say no more.)

Typically when the catheter is pulled out of the artery, a special sealant is applied which closes the wound. This advance allowed TACE to become a routine procedure; done on outpatient basis. Before, the procedure required several days hospitalisation I believe. For some reason the sealant did not hold this time and they had problems sealing the artery and stopping the bleeding.

They eventually wheeled me out with a special pressure tourniquet that looked like a weird half diaper. It was very uncomfortable. This was another first for me.

I was dismissed later than I anticipated and missed my 3pm local hyperthermia appointment at the Sibenhuner clinic. The clinic was very accommodating however and they were able to squeeze me in even at the late hour. I like the idea of TACE followed straight after by local hyperthermia. At that time most of the chemo drugs should still be locked inside the liver. The high temperature stresses the cancer cells and also helps to dilate the capillaries, giving the chemo agents better access to the cells.

After all the problems there was a silver lining. After TACE, my liver swelling reduced significantly. The liver stopped pushing on my stomach and this caused my nausea to go away. For the first time in weeks I could also eat a normal meal, so I took full advantage of this. I still had pickled herrings for dinner however. Go figure. (Read next post to understand the herring comment.)

I had a chance to talk with prof. Vogl for a few minutes just as he started the procedure. (He is still a man of few words). He mentioned seeing a very active tumour on the MRI which he believes was the source of all my recent swelling and associated problems. He said that he would focus on this tumour during this treatment. Later his official report for the prior month would say a mixed response with stable disease. Stable is a relative term and in reality I had further progression, just not enough to officially qualify as progressive disease. The rate of growth did slow down however, which means that I’ll be around for at least another month. WoooHooo! 🙂

It has now been almost a full week after the TACE. I still feel quite good. In fact 100% better than before tace. Some liver swelling returned, but its not as bad and I have no nausea. I can eat pretty much anything and everything at the moment. Trying very hard to regain some weight, but not having much luck with that thus far.

My leg is giving me problems. For the first four days I could not walk for more than a dozen steps before my right leg just ran out of energy. I think the artery is blocked or obstructed and this has reduced the blood flow. I can feel a sizeable hard lump in my groin, which I think is a blood clot as I did not have this the last two times.

Last two days the clot got smaller, but newly developed pain now makes it very hard for me to move about. I am expecting things to get better by the end of next week; based on my prior experience.

I am booked in for another Vogl TACE next month. Great!!!

Posted in Chemoembolization, My Journey, Treatments | 1 Comment

Removab Cycle 3

Posted on July 21, 2013 by Ren

20130721-120116.jpgI arrived at the Hallwang private oncology clinic on Friday evening, and had the first Removab (Catumaxomab) treatment the following day. This makes it my third Removab cycle.

First thing that surprised me was a change in procedure at the clinic. I had to get up early in the morning to start the treatment. The reason I was told, is that they want the Removab immune reaction to happen earlier during the day while the doctors are still present. They don’t make changes like this for no reason and the rumour going round the clinic is that someone died recently from the Removab treatment. Not surprising, the drug attacks anything that expresses EpCAM on the cell surface, and the side effects can be severe. Also worth noting that Removab was not approved in Australia by the TGA due to too many adverse side effects.

I was ready with a thermos full of hot tea waiting for the chills and high fever, but this time the reaction never came. I just felt a little more tired than usual. How disappointing. I must be building up resistance to the antibodies.

I was told the next day that based on my blood tests, I did have a responce to the treatment however. I guess that is good, but a reaction would have been reassuring.

Four days later, Wednesday, I had my second Removab infusion. This time they doubled the dose to 10 micrograms. I was hoping for a good reaction, and I certainly got my wish. I know how to handle the extreme fever chills and shakes now, but I made the mistake of staying too long in the infusion room, and the chills caught me on the way to my room. I started shaking uncontrollably in the elevator of all places. When the reaction starts, the body feels the need to raise the core body temperature to over 40 degrees and to do so as soon as possible. To achieve this, every muscle in your body is instructed to spasm in order to generate heat. And spasm they do, quite violently.

Made it to my room, ordered 3 heat packs and drank lots of boiling hot tea. Luckily managed to yet again get ahead of heat curve and avoided the worst of the spasms. The reaction was quite severe this time. My temperature rose to 40.1 degrees within 30 minutes. That in itself is not so bad, but my blood pressure shot up to 220/130 and this was giving the nurses a lot of concern. This was accompanied by a migraine which made it quite an unpleasant experience overall.

They got my fever down with drugs, but it shot up again few hours later and refused to come down. (Not that I was complaining. Its free hyperthermia after all.) It was a long night. The next day’s blood tests showed highly elevated liver enzymes, so my liver certainly got hammered. I just hope that it is doing some good.

I cancelled my NDV (Newcastle Disease Virus) treatment in Duderstadt and this gave me 4 extra days that I could stay at Hallwang. Decided to try and squeeze in a third Removab shot. If they double the dose again, as they always seem to do, I think that I will be in for quite a ride.

Posted in My Journey, Removab, Treatments | Leave a comment

New Hallwang Treatments

Posted on July 22, 2013 by Ren

20130722-130110.jpgMonday was the first chance that I had to speak with Dr. Kopic, the resident oncologist at the Hallwang clinic. Last month when I mentioned that it appeared that I had significant progression he mostly dismissed it. From his experience, the Tace and Removab treatments can cause swelling which may look like progression. Also a substantial drop in CEA confused the situation. I however knew that what I was looking at was no mere swelling, I just could not get my view across.

This month I was armed with both a new MRI and a PET/CT. Dr. Kopic took a few minutes to go over my liver scans and for the first time since my initial consultation 3 months ago, I saw genuine concern on his face. I also lost a great deal of weight which he noticed straight away. (I didn’t have much weight to lose to begin with, so the 4kg drop really showed).

He took a moment to mull things over and started to prescribe new therapies:

1. Mitomicyn Chemo over 48 hours
2. Direct Mitomycin injection to the liver tumours
3. Tarceva
4. Xeloda after I finish my Removab treatments and leave the clinic.
5. Avastin

Not terribly keen going back on chemo in any shape or form, however I like the fact that this is something new, and not the standard Folfox or Folfiri. Its also all low dose, so I don’t expect any major side effects other than a rash from the Tarceva and the familiar Avastin nose bleeds.

I started on Tarceva and Avastin (Thanks to my friend Pete who lent me a batch from his Avastin stockpile) the very same day and ended up getting the Mitomycin the day after. Instead of the direct liver Mitomycin injection I opted for a liver biopsy, but that is a topic for the next post.

I also cancelled my NDV Dendritic vaccine with Dr. Nesselhut so that I could stay 4 days longer at Hallwang and fit in a third Removab treatment. This is a calculated risk as I believe Removab has greater short term potential considering my extensive tumour load, whereas dendritic cells are more long term. Dr. Kopic is also not very keen on the NDV treatment for solid tumours. In his view the NDV virus can potentially stimulate tumour growth. Nesselhut does not agree with this of course, but I can’t take the risk.

I believe that Dr. Kopic is by far the best oncologist that I have met and I have seen quite a few now. I also feel like things are finally happening at Hallwang and I trust Dr. Kopic and his team to keep me alive.

Posted in My Journey, Treatments | 2 Comments