luann

Thank you Marion.

I certainly agree with you that we must be very cautious about the use of this type of therapy. Every oncologist we’ve spoken with has suggested that LuAnn should eat whatever she likes, and that maintaining weight is crucial. The words are that: “weight is like money in the bank”.

My problem with the whole field is that science has not come up with suitable answers for ICC; hence my casting about for any and all anecdotal evidence from alternatives that might be helpful. Where they are not harmful, we will try them. For example, I picked 6 gallons of serviceberries, made a slurry of them to remove seeds, and froze “cookies” of them, one for each day until next year’s crop; this because someone suggested in an obscure article that serviceberries might be helpful. Same with eating asparagus daily.

In addition to Dr. Longo’s work, there are some studies going on with respect to short term starvation idea. Tanya B. Dorff, M.D. Assistant Professor of Medicine at the USC Keck School of Medicine is studying this idea. I was hoping someone on this forum could add to what is available from Longo and Dorff.

My background is in an entirely different field, and I know that acceptable scientific results depend on outcomes from different treatments with large sample sizes being preferred. I read that ICC is quite rare; approx. 1 in 100,000 cases in U.S.A per year. And these cases of ICC may be quite different from one another. I have concluded from my field of study that a sample may consist of items that are not quite the same, and the “scientific” conclusions reached from the statistics may be misleading. On the other hand, a careful detailed study of one specimen (case) may lead to very useful results from a sample of size one.

This forum may be the best possible place to gather these 3000 or so cases per year to discuss what is happening to each other and come to some sort of “scientific” result short of the controlled studies that the large drug companies like to run. For understandable financial reasons, I don’t think we can expect them to concentrate much on ICC. Much excitement in the cancer field with PD1 trials is in the literature; but we’ve found it impossible to participate.

For us, there simply is not time to wait until the science is in place.

Again, Marion, I thank you for your kind reply and look forward to hearing from others that may be able to shed additional light on this. Tomorrow, we go to see the oncologist and likely decide on the next course of chemo.

yours,
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