6 replies to this topic

[scuba]

I came across an interesting article on augmenting cancer therapy with polyphenols (plants) such as Curcumin.

http://twocircles.ne...s_show_way.html

I am back to my original 20mg per day Sprycel. Along which I take 8 grams of Curcumin. But I also eat Broccoli every day (I just like it - especially crunchy).

I am borderline PCRU at last test (0.003) in which I was told I am below the detection limit of 0.01, but they still gave a number. Dr. Cortes told me that if I wanted to reduce dose to 20mg, to go ahead. He expects my response to be the same as what I had at 40mg. He is a strong believer in lowering dose if lower dose works. So I decided to go back to my old dose since the higher dose didn't change anything. On 40mg. I had "sensations" - can't quite say side affects, just that I noticed my heart/lungs more when lying quiet. On 20 mg. - nothing. I continue to ask him if the Curcumin is enabling the lower dose to work as good as a higher dose. He told me - "could be - we don't know without trials". So I am my own non-scientific trial. I would have to stop taking Curcumin to see if I hold my response on just 20mg. But Curcumin has been terrific for joint pains - I no longer have any and is otherwise good to have in the body vs a toxic TKI. So - long term - it's 20mg. Sprycel plus Curcumin (8 grams).

I am coming to the end of my personal dose experimenting. The only thing left is to stop taking Sprycel altogether and see if my MMR stays the same. I'm getting close to making that decision, but need permission to have a PCR test at six weeks instead of the normal three months. I would want to catch a relapse as soon as it were to appear. There is a huge psychology to PCRU even though we all know it's not a cutoff, just a limit of detection. I wonder how many people (Chris C comes to mind) who are PCRU, still have a positive PCR if the test were more sensitive (a few more decimal places) and have also been drug and disease free. Maybe 0.01 is sufficient for some. Every three months I get so close to just stopping and see what happens.

[Trey]

I would suggest letting the TKI keep working at eliminating the higher order leukemic progenitor/stem cells, which is what is finally happening for you at this point.  Maybe another year.  If you completely stop TKI drugs too soon you will not push these higher order cells into oblivion, and you will need to start over.  They are on the run, but don't give them a chance to make a comeback.  Patience.....steady wins the race.

[TeddyB]

Always interesting hearing from you scuba.

I will be following the Destiny trial to see how de-escalation in a controlled environment will affect CML.

http://www.controlle.../ISRCTN74084226

I am not keen to live the rest of my life on 400mg Gleevec, but if i have to (and tolerate it), i will. I am far from my "old" self, and side effets are an issue, with fatigue and tinnitus being the worst.

Cutting back to maybe 200 or 300mg might be an option after a few more years, at least if the Destiny trial can help confirm Trey`s thoughts on the subject, and if my results dont get any worse.

I am almost at the 2 year mark now, and have had a stable MMR since 6months past dx, so i am hopefull my CML wont return (knock on wood), but i am still scared each time my pcr results are around the corner.

In regards to your article, luckely i eat brocoli and cabbage with fish 2-3 times pr week, and i use turmeric on my food almost each day (probably not enough for it to have much effect though), i do however not drink green tea

[hannibellemo]

Scuba,

I love the idea of taking the curcumin if only for the joint pain. Just this year my hip, in particular, is reminding me I have one. However, as soon as I tried Curcumin, within a week I had a nasty eye bleed. Hadn't had one since starting Gleevec at the very beginning. Perhaps it's time for another trial.

Although I would love to be PCRU it's not my goal because I have no real control over it. I'll be tickled pink to stay at MMR!

Pat

[Marnie]

Hey, Scuba.. .thanks for this post.  I will be meeting with my onc soon to discuss a new course of action, and I'll ask him about Curcumin.  Never hurts to throw ideas out there.  Chest x-ray tomorrow, and I'm guessing another thoracentesis (did I spell that correctly?) on Friday.

Pat, thanks for your info.  I am preparing myself mentally to live with crappy PCR numbers for awhile until I get the p.e. issue under control.  It is helpful to have information and time lines from people who've been there.

Scuba. . .your reminder that 20 mg works for some people is helping my peace of mind.

Marnie

[CallMeLucky]

Out of curiosity is this straight curcumin or the curcumin with bioperine?  I ask because as we have discussed bioperine is a dasatinib inducer and if I even take one curcumin with bioperine I have stronger side effects.  Straight curcumin no additional side effects but no benefit in PCR either.  I haven't wanted to tolerate the bioperine so haven't taken it long enough to see if it impacts PCR.

I just had blood draw Monday told dr if not negative I would consider going from 70mg to 80mg.

[scuba]

The Curcumin I take has Piperine in it. I take Sprycel about six hours after the last Curcumin. At only 20mg. Sprycel - no effect whatsoever. On 40mg Sprycel, I felt the drug, but it was subjective. In conversation with Dr. Aggarwal at M.D. Anderson, he says it makes no difference - that the Piperine is there to help absorption of the Curcumin. Once in the blood it has about a two hour residence time. You might consider BCM-95 which has no Piperine. I don't take BCM-95 because it required too many pills (500mg each). The one I take comes in 1 gram caplets. So it was a form factor consideration. I'm religious about the 8 grams. That's what Dr. Aggarwal says is the minimum and was cited in research in colon cancer.