Jun 21, 2013 - 9:54 am
I know some of you have been following my experience at hallwang with interest, so I wanted to post the results of my first post-treatment CT scans. Pete and Ren W are also taking treatment in Germany (not all at Hallwang), and have been including treatments, diets, supplements, etc... that Hallwang does not offer. I went there and basically did what they recommended, and continued that after returning home. To summarize, while at Hallwang I had a TACE (actually by Vogl in Frankfurt but arranged through Hallwang) of the liver, followed the next day by whole body hyperthermia. I took infusions every day I was there, and had 2 removab injections. According to Dr. Kopic, I had an extremely good responbse to the removan based on the bloodwork they do and the side effects that I experienced. His words were that removab "was a very good drug for me". After leaving Hallwang, I was given a bunch of supplements to take daily, as well as instructed to go back on avastin and to take 1000mg of Xeloda daily (2 x 500mg pills), and to take 500mg Metformin daily. I have been following that protocol pretty well, with the exception of missing an occasional dose of some supplements due to not bringing them with me to work or when eating out, etc... I'm sure that is common with many treatments. Anyway, here are the results:
Good News: No new tumors noted and no significant progression of disease despite not taking any systemic chemo for 8 weeks or so.
Bad News: No shrinkage of any tumors, and if anything slight progression in several tumors. Most perplexing to my oncologist was the large liver tumor that received TACE as well as Removab, as it had definitely not shrunk at all and probably showed the most progression. I had slight progression in some lung tumors, and I'm starting to get ascites fluid building up in my peritoneal cavity. Clinically, I'm still "stable", but things are going in the wrong direction...
Pending: CEA and CA19-9 levels.
My Analysis: Removab and TACE do not appear to have helped me at all.
Plan moving forward: First, my oncologist wants me to get a PET scan to look at the activity levels of the tumors that have grown to make sure there is not necrosis going on that we can't see on the CT scans. Second, she wants to biopsy one of my liver tumors and re-test KRAS and BRAF to see if it the same as the primary tumor that was biopsied a year ago. If not, KRAS mutant then we could consider Erbitux. Third, she wants me to start FOLFIRI plus avastin within the next few weeks (after we get PET scan results). Fourth, I will likely need to get some fluid removed as it is causing me discomfort and affecting my ability to sleep.
Final thoughts: I don't want to discourage anyone else from considering Hallwang, but be prepared that what they offer is no guarantee of success. Pete has done so much on top of the Hallwang protocols that it is nearly impossible to know what may have helped his case. I don't want to go into detail about Ren's experience without his approval, but maybe he will post his initial results after TACE and Removab (plus a few more things he is trying). Right now, I don't think I can justify spending another $60,000 plus for more Hallwang treatments. I will be sending the CT scan results to Dr. Kopic for his review, but will likely start FOLFIRI and then re-consider Hallwang at a later date. Wish I had better news to share...