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NCCN Guidelines for CML

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Hi All,

Whilst trawling through Amazon books I found that the NCCN -National Cancer Comprehensive Network earlier in 2020 had produced a paperback of Guidlines for Patients .However the same document is available on the NCCN website.It is a fairly comprehensive guide for the patient and makes interesting reading..

Has anyone come across this site/document  before?

One of the sections that might be contentious is that of conflict between some tki treatments with other supplements and they list Turmeric,St Johns Wort,Green Tea Extract and Gingko Biloba as those to avoid;turmeric has  been the subject of several threads on forum before and we know to avoid St Johns Wort.

I am surprised that green tea extract has been included ? Does gingko affect platelet levels and clotting factors-are there any comments or any studies on these two supplements used in combination with say imatinib or the other tki s ?

Thanks

John

Not surprised to be honest about the supplements and why for my own personal reasons don’t supplement at all. I supplement only through food veg and fruit, meat. My consultant says all those will do nothing for CML, only TKI will sort that. But each there own. But I didn’t realise that it could cause issues with TKI.

Also they updated the treatment guideline that say anything under 1% is treatment met and no mention of MMR which is kind of music to my ears... which I knew from a couple months back (only because some of us aren’t MMR and it causes a lot of emotional distress to not be MMR.

Be interesting to hear from those that advocate all the supplements.

Alex

The NCCN guidelines are an excellent resource for newly diagnosed patients. It's recommendations are solid for those who rely only on their physician and the pharmaceutical company providing the drugs which treat CML. And if treatment works and response is excellent, no further action may be warranted.

However - for those of us who have been living with CML for many years and experienced drug failure, myelosuppression, debiliating side effects, unsatisfactory response and related - the NCCN guidelines can be very limiting on courses of action. Additional protocols for which only novel research done by medical universities and gifted researchers not necessarily affiliated with pharmaceutical companies can only be found outside the scope of the NCCN.

For example - I take Curcumin with sprycel. I have been doing this for 10 years. Only by taking Curcumin have I been able to stall my CML progression and enabled a more robust response while taking a low dose of sprycel. There has been much research on Curcumin's anti-cancer properties as well as other health benefits. For example:

and yet the NCCN guidelines suggest avoiding Curcumin. I strongly disagree with "them" on this. I suspect because  "pepper" is often added to curcumin and pepper can enhance drug absorption is the reason this warning was included in the guidelines. For people taking very high doses of dasatnib (i.e. 140 mg) perhaps this is a concern - but only in timing. Curcumin is absorbed and metabolized in a few hours (2-4) and Sprycel is metabolized in 5 hours. Taking curcumin and sprycel separated in time should be more than sufficient to avoid this issue if indeed it exists. In my case I take curcumin and sprycel often at the same time. No issue whatsoever AND I believe as the article above shows, there is a synergistic effect.

Finally - I learn much from those on this forum particularly Sandy, David and 'the team'. NCCN guidelines are a start - after that, the actual experience of CML patients and what they have learned is of more value to me and hopefully others.