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CML treatment, supplements, alternative treatment, coping... Advice in general

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#1 Dona_B


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Posted 05 May 2014 - 04:47 PM

I'm new to the forum and relatively new to CML. I was diagnosed last January. I take 80 mg of Sprycel (easier to spell than the generic). There is a wealth of information out there. How do you sort through it and determine what is useful and what is not? Before diagnosis, I wasn't on a lot of medicine. I took supplements and was fairly healthy. My oncologist isn't a big fan of supplements because they aren't regulated and would prefer I didn't. I understand that with chemo therapy, one is limited on what they can take. If I understand correctly, Sprycel is a chemo pill, so do all the chemo regulations apply?

Does anyone do the juicing thing? Alternative treatment? If so, is it with the blessing of your oncologist? Does it have to be one way or the other?

The next question is genuine. I don't sell the specialty direct marketing, pyramid type products (like Reliv and Juice Plus) and I can see why they are banned from here. I hope this question is allowed... If not, Administrator, please removed the thread.  How you deal with friends who sell that stuff? I'm presuming none of it is good.

Thank you for any help. I want to get through the threads like I said but there is a wealth of information out there and I haven't figured out a faster way to sift through it.

Thank you,


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17

#2 Trey


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Posted 06 May 2014 - 05:08 PM

Welcome.  It is hard to sort through most of the CML information from researchers and journals since they use a specialized vocabulary.  I have learned to understand the vocabulary so I often sort out issues such as in these discussions:

For newly diagnosed:


Specific issues:


Many other CML subjects:


Regarding supplements, they are generally good for you (regardless of what doctors believe) but they do not directly fight the CML, they just help you be more healthy otherwise.  Also, the CML TKI drugs deplete some important minerals such as potassium, magnesium, and calcium, so many of us take those as supplements or eat foods high in them (cheese, yogurt, ice cream, etc).  I also believe in a good daily multi plus Vit C.  There is no reason to avoid supplements except that you should not take calcium along with the TKI drug since calcium can bind to any drug and reduce uptake into the bloodstream.  Otherwise your Onc's concerns about normal supplements are unwarranted.

#3 Happycat


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Posted 07 May 2014 - 08:08 PM


You will get lots of advice and suggestions from people who genuinely just want to help you. Some of it will flabbergast and annoy you (like being told it is all in your head and you just have to think yourself back to help - advice from a big mind-body believer at work). Just remember they are trying to help. As for people wanting to sell you something, just tell them you'll check into it with your doctor and leave it at that. He can always "be the bad guy" if you need to get rid of a very persistent person. Nope, sorry, doctor doesn't think it is wise.

Regarding supplements, I must have calcium and magnesium to controls annoying muscle spasms. If you decide to take any supplements, vitamins, herbs, etc., my advice is to buy US manufactured ones, or go EU, Aussie, etc. Avoids ones manufactured in countries with lax regulations. In particular, I would avoid Chinese ones, simply because I see a lot of their QC practices in my job, and I can say the product quality is hit or miss. Well, there's that, and then there's the number of Chinese chemists I work with who won't buy Supplements or packaged foods from China and tell me you never know what junk is in there!


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