After 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.