[After an unsuccessful chemo for her mantle cell lymphoma, Michele went to the CHIPSA hospital in Mexico and was treated with a variety of alternatives there; most notably Coley's toxins.] (Michele’s voice): I could tell you tons about CHIPSA and probably will over time, as I spent a long five weeks there, but it sounds like you mostly want to hear about Coleys. I didn't start Coleys until after two weeks at CHIPSA. They want to get you detoxed with the diet and with the coffee enemas first. I also had hydrotherapy sessions which got my temp up to >105 degrees 3x/week. I was on IV urea, vit C and Laetrile. We did high dose vit A. I had the mercury amalgams removed from my teeth. I had Coleys intravenously 2x/week after the first two weeks.
I went to the ICU after breakfast, got in bed, got hooked up to EKG, finger oximetry, rectal temperature probe. The ICU doc gave me an IV "piggyback" containing 0.02ml of Coleys in saline. I don't know their source of the Coleys. It took about a half hour to run in. About an hour after it ran in I would start to feel very cold; not just unpleasantly cold but cold to the core, like you are dead cold. No amount of blankets or heating pads really helped. Then I would start to feel extremely achy, like you have the flu, but worse. Then the shaking chills would start, uncontrollable. Mine weren’t as bad as some people's. Lasted about half hour, I guess. You really have no sense of time in there. What was the worst for me was that I would get really terrible backaches and the worst headaches I ever had. They can't give you anything for them , because they won't give narcotics, and anti-inflammatories halt the Coleys action. The few other people who did Coleys while I was there had worse chills but no severe pains. After the chills stopped then my temperature would go up. Mine never got higher than ~102-103, most people got higher temps than me. After about 2-3 hours of all this severe discomfort I would ask them to please give me something to stop it and they would give me IV Toradol, an anti-inflammatory, which would almost instantly relieve my pain. Then they would continue to monitor me for an hour or so, have me take a "coffee break" (enema) advise me to take coffee break every 2 hrs that day, and send me back to my room. I did this twice a week. It was hell. Sometimes they would also inject it subcutaneously into my enlarged cervical nodes.
When I went home I continued, to this day, taking Coleys ; though taking it sub-q does not produce the severe reaction, except as I will explain. I had enlarged nodes under my right jawbone that reduced while I was there. Also some smaller cervical ones. I had to inject my self around the nodes one week (that was hard!), and the next week I just did it in the abdomen (piece of cake). Just one time a week. The injection sites became extremely inflamed , swollen and painful. Clay packs help a little.
Unfortunately, over the next four months, I got worse. I was having some toll from the strict diet, eating problems from my dental work, my nodes were getting larger and larger. The node, now tumor, under my jaw was now ~4inches long. But I kept at it. I was continuing to have bi-monthly bloodwork and telephone consultations with my CHIPSA doc. Then, about 3 times in a row that I injected Coleys into my tumor, which was apparently quite vascular, I had strong reactions, with the chills, aches etc. Apparently hitting a blood vessel. Probably not incidentally, at the same time I also stopped working at my very stressful nursing job. For what ever reason, all of a sudden, within several weeks, my tumor and all nodes melted away. My regular onc doc was "astounded" (his words - although he still does not want to know exactly what I am doing.) I am not in remission. I still have abdominal nodes that are enlarged although they went down by half during this time. I don’t know what my bone marrow is doing because I don’t see the need to poke me just to be curious. My blood counts are low since chemo but improving on some new stuff I'm on now called Hobioguin, expensive, but not as expensive as Neupogen. I have fatigue, but otherwise feel OK. I don’t follow the strict Gerson diet anymore (though I should be), but I do all the meds and juices and coffee enemas (1-3x/day).
Total cost of my CHIPSA hospitalization - 31,000 dollars. Some insurance coverage, but I'm having another company intervening for me to get the most we can. Coleys alone was $3000. I probably spend ~$2000 a month on my therapy - organic foods, meds, etc. One final note before my eyes fall out (it's very late): My CHIPSA doc is absolutely wonderful. He would go to the moon and back if there was a treatment there that might help me. They don't care who gets the glory. They want to give holistic and all encompassing treatment, including chemo if need be. They now are doing new vaccines, lots of other stuff, always changing as new things come available. I would probably go back there before I would try any of the mainstream things. [P.S. I know lymphoma has spontaneous regressions . I don't really care
what caused my regression, I'm just grateful that it happened.]
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My dosage has always been the same - .02ml, or 2units on an insulin syringe. And that's the same whether it was IV or Sub-Q. Although once at CHIPSA, they gave it both IV and SQ .02ml in each . I guess I don't know for sure, but I believe that's the standard dose, not based on weight. I'll ask Dr. Carreño when I talk to him in late June. When I got home and was doing it myself, and not having the strong reaction that I would get after IV, I remember asking Dr. Carreño if I could up the dose, and even contemplated doing it anyway. But he convinced me that it was still producing the desired inflammatory response in my various WBCs. But all the while I was doing this, my tumors were growing. I looked like I had a large hot dog bun attached to my jawline! But I kept doing it. The injections would cause a severe and painful local inflammation - my jawline/neck would be even more swollen, and now red, hot and hard. Clay packs (also prescribed by CHIPSA) helped, but it was hard to keep them on. Finally, as I said, for whatever reason - about 6 months after starting all this, the nodes (8 - 10 of them) and the large tumor melted away, softened up then disappeared.
Actually, I felt it was much worse than the CHOP I had, which I tolerated quite well. The reaction after the IV treatments is the worst physical feeling I've ever had, and the pain and inflammation of the local injections are significant. But I'm also a big baby. As far as the opiates for the severe headaches and back pain - a basic premise of Gerson and CHIPSA therapy is that all drugs are "toxic", at a time when I was working so hard to get detoxed. But it does seem a little inhumane now that I think about it. But I do know that several of the patients that were there with me came in on opiates and by the time they left, required much less or no opiates. I lived through it.
[Did they shoot it deep into the tumor, or just lightly under the skin?] Both. If a node was small, they taught me to shoot it from 2 angles, under the skin, on either side aimed toward the node. When the node/tumor got bigger I could just push the needle straight in. I was using an insulin syringe which had a 5/8" needle, very small, as far as needles go . When I had several small nodes, I would prepare the usual syringe, 2units of Coleys diluted with 30 to 48 units of saline (0.32ml to 0.5ml total volume) and inject part of it into one place and part of it into another place. The amt. of dilutant need not be exact. When my tumor got big I would inject it in several places. And it was big so I could plunge it in deep. I was worried about hitting something important in there but Dr. Carreño reassured me that the needle was so small I couldn't damage anything, and the worst I could do was get an inadvertent IV dose.
For the last several months, I do it just every 2 weeks. Something about giving my WBCs time to "recover". And just now into the abdomen.
[I am in awe of your perseverance! I probably would have quit in discouragement! Wow. That must have been a very difficult time for you...] It was. I can't tell you how many times I felt like quitting the therapy. I had so many doubts. Actually, I still have doubts about the Gerson therapy, which sounds so logical when they're explaining and teaching it to you, but incredibly farfetched when you're trying to explain it to someone else. Yes it was a difficult time - growing tumors, feeling worse, working at a stressful job, marital problems, a typical 2 1/2 yr old, juicing, doing enemas... But stopping would have been like giving up, and I was told the therapy needed to be done for 2-3 years.
[Did you have to pay them there or do they take installments?] Yes , they want
payment every week, in cash or traveler’s checks, but I didn't want to travel
with that much money, so I took some, and they
worked out something with my mom, who was paying for the treatment (I'm spending
my inheritance). My bills were about $4000-5000/week! Basic hospital charges
were $3000/wk plus lots of extras. I don't know how other people made their
arrangements, but I do know bills had to be paid right away. (Cancer patients
are not good financial risks, you know.)
:-)
[Have you been instructed to titrate the dose upwards?] About the Coley's dose
titrating question - I've not been instructed to vary my dosage at all. I've
been doing it over a year now.
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The above account of Michele’s treatment with Coley’s toxins was recorded in the spring of 1998. At present (October 1998), Michele reports that she no longer has any enlarged nodes, but her spleen is still enlarged. She also suffers from fatigue. She continues with the treatment.
Gathered by Vera Bradova © 1998
Updated 9-25-1998
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