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Link to archives of now defunct old LLS CML Forum

Sandrea, a member from the US LLS forum and a new member here has posted a link to the archives of the 'old' LLS forum. As members here may miss this link (Sandrea's post is quite a long way down on one of the more recent threads) I thought it best to start new thread with the link she has kindly shared with us. I have taken a look and I think it may well be very helpful for members of this forum. So take a look here:

Welcome and many thanks to Sandrea (and all other new US LLS members) for joining us here in order to continue with us in sharing our experiences and advice with other CML patients, both the newly diagnosed and the more experienced, no matter where they live. Through online fora like this one, we can all continue to learn and self-educate about CML without censure. 

To answer another question on one of the threads below - the original forum that I joined in 1999 was on the list serve for CML  (which still exists). At that time, the phase 1 trial for STI571 (imatinib) had been going for about 1 year with pretty spectacular results. Of course Phase 1 trials are usually small and I think only around 10 patients were enrolled at Portland OR - I assume the same numbers had been recruited at the other 2 sites (UCLA and MDACC Houston) - although the details are a little hazy now!

Eventually, for reasons I will not bore you with here, I and another member of that ACOR list migrated to another US site, which was on Yahoo groups and run by a guy called Rob. Not long after that Jerry Mayfield who was being treated by Dr. Talpaz (MDACC) decided to start the 'unofficial' STI571 site which proved to be very popular with CML patients worldwide. Jerry's style of discussion form was the original threadlike design which we copied..... Jerry was very generous and helped us with getting our website started and CML Support went live in April 2000. There are many different formats out there but we have tried hard to keep the forum design as near as possible to Jerry's original, and quite individual, design as were believe it mirrors how people actually talk and communicate with each other. 

Scuba - I too have a deep interest in nutrition and self help so we have that in common as well as CML. There is currently a great deal of interest (excitement!) about the positive effects of supplementing with Curcumin, especially after this recent publication in the BMJ (British Med Journal) about a Myeloma patient who refused further chemotherapy as it wasn't controlling her disease. Link: She started supplementing with high dose Curcumin - see link to another article about Curcumin here:

I have posted another link on our facebook page - Facebook button is at the bottom of page- to an article that I came across last week that cautioned about curcumin having an anti-platelet effect as well as the potential to interact with other drugs. It suggested that it should be taken some hours apart from any other medications, and I would add for those who have a very low (less than 80) platelet count may want to be cautious in adding Curcumin to your diet. Have you come across this article or others like it?


Hi Sandy,

Thanks for welcoming us to this forum.  It is very natural and easy to communicate, and search for threads from years ago. Sandrea's capture of our old LLS forum threads is a huge gain. There is much information there that members on this forum should find very useful. Searching is easy.

I am a strong advocate for Curcumin having been my own guinea pig for many years. I started Curcumin in 2011 and have been taking on average six grams per day. I started at eight grams (C3 complex with Piperine) and when my PCR went "undetected", I dropped down to between four and six grams. I dropped only because of cost and to test if I lose PCRU. So far - so good. A big benefit of Curcumin that you can feel is in joint relief. Arthritis runs in my family - and once I started Curcumin any hint of it disappeared. I have zero joint issues now. 

Although Curcumin has blood thinning properties, it is no where near as great as caused by drugs people take (Warfarin) for blood thinning. Curcumin behaves similarly to baby aspirin. People with low platelets, however, should watch for Petechia signs (red bumps on skin) as an early indication of blood clotting failure when platelets are low. I would stop Curcumin in that case.

Using the old LLS forum link above, readers can have a lot of fun searching the old archive for the debates between me and other members who regard Curcumin as not valid. We went back and forth on a lot of these ideas. Vitamin D and K2 were another area of debate on whether nutritional support can truly help our CML status. Not a cure - but if patients can take less drug and get the same or better result - that's a good thing.

And finally - research I have been reading here on fasting and its ability to regenerate the immune system. I'll post later when I can summarize.