24 replies to this topic

[CallMeLucky]

I'm in an interesting spot.  After my PCR had gone up from undetectable three months ago, I decided to start taking Curcumin and see what happens.  My last PCR went undetectable again.  I was happy, no way to know if curcumin was the cause but it didn't seem to be hurting anything so I figured I would keep taking it.  Over the past week or so I have had two things happen that appear related to blood quality.  I have started bruising pretty bad, I have three large bruises on my legs.  These are real black and blues and not the skin abrasions I typically get below the skin surface.  I also have had an increase in the Cherry Hemangiomas that I have been dealing with since I started taking Gleevec.  No one can tell me why I have been getting the Cherry Hemangiomas for certain, but it appears it could be something to do with the capillaries and potentially the quality of platelets (my actual platelet count is fine).

I did some further reading on Curcumin and found the following:

"Animal research suggests that curcumin (the active ingredient in the yellow spice turmeric) has anticoagulant action. Both ginkgo and curcumin appear to keep blood platelets from sticking together to form clots."

Bruising and Cuts

• Other serious side effects of taking curcumin include being able to bruise easily and having cuts that cease bleeding at a very slow rate. People who experience these side effects should notify their doctors immediately.

Read more: Curcumin Side Effects | eHow.com http://www.ehow.com/...l#ixzz1zwKAdzOv

Hemorrhagic Stroke Symptoms

• Some people might experience a very dangerous side effect of taking curcumin. Hermorrhagic stroke symptoms are potentially dangerous curcumin side effects. Hemorrhagic strokes occur when the brain bleeds. People might notice either numbness or weakness of the legs or arms (or both), changes in speech and vision, or persistent, extreme headache. In these situations, emergency medical attention should be sought.

So I'm really not sure one way or the other.  I've decided to stop taking Curcumin for now and see if things clear up a bit.  I will probably try again and see if issues return, in which case I would have to abandon it all together.  It sucks, because I believe there is a benefit to it.  Obviously everyone will react different, but I would suggest being aware and keeping an eye out for these things if you have decided to experiment with it.

[hannibellemo]

Thanks for letting us know your experience, Lucky. I took my first 1g tablet yesterday and had decided I was going to try this just for the joint "healing" properties and stay at that level or 2g at the most.

I couldn't find anything on drugs.com (duh, since it isn't a drug) so I was also going to see if anyone knew of good sites that talk about the precautions of using curcumin. Thanks for the websites.

PamSouth (? or someone) recently posted about her experience similar to yours with curcumin.

Pat

[robertmeador]

Bleeding in the brain associated with Leukemia is called Disseminated Intravascular Coagulation (DIC) and is a very serious disorder.  I had it the first week after being diagnosed with AML and the docs thought I was going to die.  I would be very very careful taking any supplement while being treated.

Bob

[scuba]

Gary,

http://www.livestron...eating-bananas/

Eating just one banana could be dangerous.

My point - anything can be bad for you. So common sense is the order of the day.

Curcumin has a lot of data to support its health function. Obviously, if you suffer from easy bruising or have a Platelet problem where the platelets don't stick together then Curcumin may not be for you.

I take 8 grams of Curcumin a day and have been taking more than 4 grams for more than a year. I have no bruises other than when I bump into something or play rough with my dogs. And then the bruises clear up. I do know that when I increased my dose to a full 8 grams during this last six weeks, my PCR no only went back down to where it was (before the uptick), but dropped another half log. It could just be margin of error or something else. But for now - I take Curcumin with my Sprycel.

CML is dangerous. I believe the Curcumin is helping Sprycel work better. The combination has been effective against colon cancer so I am hypothesizing that Curcumin will augment Sprycel's effectiveness. I have no idea if it augments Gleevec's effectiveness.

We do know that Curcumin is very effective against Multiple Myeloma (another blood disease), but only in the 8 gram dose level.

I switched from Gleevec because the 400mg. dose was not working well and I either had to go to 800 mg. or switch. The Gleevec side affects, mostly nausea was nauseating to me. I am pleased that low dose Sprycel is effective.

Dr. Cortes had no issue with me taking Curcumin. He did not endorse it, but he also did not want me to stop. He is curious whether it does in fact augment a TKI's effectiveness.

[Trey]

As with most things, if a person has a propensity for bleeding easily, hemangiomas, has poor platelet quality, etc, then the curcumin could cause the issue to worsen.  But those without such issues could lose some blood quality and not have a visible issue.  But curcumin is definitely a "blood thinner" (anticoagulant) and this issue needs to be considered before anyone takes it.  If a person is already taking an anticoagulant such as Warfarin (Coumadin) or such, they should not take curcumin at the same time without an OK from their doc. 

I will be more interested to see if some of those who have been in a long "PCR plateau" show a significant and sustained PCR decrease after starting curcumin. 

[janne]

Lucky,

Just curious, what dose of Curcumin were you taking during the last three months ? Congrats on your drop to PCRU once again.

Scuba,

Congrats also that your PCR has dropped further while maintaining your exceptionally low dose of Sprycel.

Because we do not have the studies available on these supplements like we do on the drugs themselves (we have studies but not to the extent of the drug studies) I certainly appreciate you folks providing feedback with your personal results. You are all pioneers. We just don't know if there are interactions with Gleevec and not with Sprycel or if it just varies with the individual patient. I applaud both of your efforts and your risk-taking. I am encouraged by your individual sucesses nonetheless !  Thank you !

Janne

[CallMeLucky]

I started at 800mg and then after a month or so I was taking 800mg x2.

I'm going to take a break and check with dermatologist.  I will probably give it another try after that but 800mgx1 and see how it goes.

[GerryL]

Hi Trey,

We could also add Fish Oil as it has blood thinning properties. As well as talking to your doctor about taking it when on blood thinners, it is also recommended that you stop taking Fish Oil a few days prior to having surgery.

[Melanie]

Just wanted to add my experience with curcumin. I started taking 1000mgx2 towards the end of May after a fish result of 2.2% came back at the beginning of May. I was on a lower dose of Tasigna (450 mg) due to low and declining HGB, PLT, & ANC and knew my dosage would continue to be lowered. Thought the curcumin might enhance the effectiveness of such low dosages. By the end of June I was down to 150mg Tasigna a day and my blood counts were all low requiring a transfusion and shots to keep me out of danger, but my 1st PCR test came back as .006 and a 2.83 log reduction. I've now been on 150mg a day for over 5 weeks and my PLT are finally almost normal, HGB is low but stable and no longer declining (result of transfusion, lower dosage or both), but my ANC are a no show without the shots. This week the Dr said to stop the curcumin and we'll do another Fish and PCR test first week in August and to continue with the 150mg. He says because its unknow how my body is matabolizing the curcumin or its effect with Tasigna, it may be part of the cause of my blood count issues. Since I'm already on the lowest dose of Tasigna and he wants to keep it in my system, he's hoping that stopping the curcumin will be part of the answer. .

While on the curcumin, I did have a lot brusing, but that could of been due to the low platelets. I don't know if any of this helps anyone with the curcumin experiment but I really feel it helped with my test response, while on such low dosages.  It just may not work well with me or maybe with Tasigna. Time and test will tell.

Melanie

[CallMeLucky]

After stopping Curcumin, the Cherry Hemangioma on my face went away.  I had never realized that some of my hemangiomas don't get to the point where they are raised above the skin.  It almost appears that I have capillary breaks under the skin and some raise, but others do not.  the ones that raise appear to be permanent, while the ones that do not appear to fade away.  I never noticed because this is the first time I had one on my face and watched it.  I decided to take another shot with the Curcumin.  I didn't want to be hasty, the mark on my face went away and so did the bruises on my legs and to be fair the ones on my leg appeared after riding a mechanical bull (don't ask) so it seemed reasonable I would have bruises and I didn't want to blame Curcumin.  I went back to 800mgx1 per day.  After a few days the Hemangioma on my face reappeared.  I stopped the Curcumin and it faded away.

So I don't think I have stumbled onto anything overwhelmingly significant here, but it does appear that Curcumin effects the quality of my blood in some way and it appears it is causing some minor hemorrhaging below the skin, which the Gleevec already seems to be doing a bit on its own.  So it seems the two together make the situation a little worse.  I plan to discuss this with the Onc and my dermatologist the next time I see each of them.

In the end I think Curcumin helps, but it appears it has a side effect for me that over time could cause a problem so in my case I think I am going to have to not use it, which is disappointing.  The real challenge will be if my next PCR goes detectible again.  I've been bouncing up and down and I was hoping the curcumin would help keep it below the line.  If I stay below, I won't think about it much, but if it pops up again, it is going to make me want to try it again, although I probably won't.  Hemangiomas are one thing, but it would be another if over time I caused some other issues.

[pamsouth]

Mbrown, 

Thank You for sharing.  Actually I am rethinking going back on Curcumin at a lower dose.  I am on Gleevec and was taking 3300 mg a day for about 3 weeds.  4 tablets at 800mg of Curcumin plus another supplement that had 100mg of Curcuming.  After about 3 week I had a bleed, so I quit taking the Curcumin and all was well in a few days.  However, I think a lower dose of Curcumin with Gleevec, might be worth trying.  I have been on Gleevec for almost seven years.  I recently starting seeing a new oncologist, where they do the labs on site, my FISH is still a postive low, staying somewhere around 1% to 6 %.  But I have minimal side effects on Gleevec and my CBC count stay mostly normal or slightly low.  Like I said it has been almost 7 years and I am doing well, or minimal side effects.  So I really do not want to risk changing TKI'S.  My onc is at a research hospital and of course they need more human live bodies for the Sprycel data.  But these drugs are much more powerful then Gleevec and of course they always want you on the standard dose.  Plus I am much older now at 64 years, so body and organs don't work as well as when I was a spring chick. Even if I were undedectible I would possibly still have millions of leukemic residual.  I don't want the long term side effects, or  blood transfusions and pills or Pleurisy, from taking high doses of more powerful drugs.  So as long as I stay in a range, that is what I want to do.  My long time primary doctors who is pretty smart cookie and her husband who is a long time pathologist. Well lets just say she smart enough to know enough of how all this works and the political arena of things and she is in full agreement, regarding my Gleevec not the supplements.  Haven't talked to her about supplements since I had the bleed, but I am only talking about taking a very small dose.  Maybe starting 800mg for a few weeks, and see how that goes and then on to 1600mg and see how that works.  She has been my primary care doctor since 2000. 

See if that will help bring down the BCR/ABL a little, without changing drugs.

PamSouth

[Trey]

Dr Aggarwal from MD Anderson (a Curcumin cheerleader --  not always a good thing) seems to believe that Curcumin inhibits a very wide array of cell signalling processes.  If that is true, then it could certainly inhibit good cell signals necessary for normal blood cell reproduction:

http://www.curcuminr...ch.org/how.html

https://docs.google....3f_ry2bK9ASeUag

[Susan61]

Hi Lucky:  I think Trey or someone said that Curcumin is a blood thinner.  I know Scuba swears by it, but we are all different in how we absorb these things.  From all that you said, it does sound like you had problems with the Curcumin that cleared up after you stopped using it.  I do hope your next test comes back real good, and that you can go on from there.   I hope everything else has been better for you too.  When do you repeat your PCR test?

Susan

[Happycat]

Interesting, Lucky. It is fascinating to me how we all share probably 99.9+% of our DNA, yet we all exhibit huge differences in side effects. 

I exhibited the same problem (bruising, not the cherry hemangiomas) when I was taking high doses of ibuprofen. It was bad enough, they thought I was in a DIC crisis when I was dx'd (well, initial thought was APML, due to my weird blood smear and bruising).

Your story is a good lesson for all. Just because something is naturally derived, it doesn't always mean it is safer simply because it is natural (not a synthetic drug).  Just like drugs, the side effects can be different, and for some people, significant.

Of course, to me, they are all just chemicals, doesn't matter if it is from a plant or tree or made in a lab.

Traci

[scuba]

Fascinating discussion ...

I take a lot of Curcumin. And I have been doing this now for more than a year. I continue to search for ways to reduce the number of capsules I have to take since 8 grams of Curcumin is lot of pill popping. New formulations are coming out (Theracurmin) that are purported to increase bio-availability since getting the Curcumin in the blood for my CML is what I am trying to do.

I don't recommend to anybody that they take Curcumin. I am only reporting here for edification what I am doing. And I am sharing my experience.

My PCR level at last reading is 0.009 (intl. scale). I have struggled mightily to get control of this damn disease first with Gleevec and then with Sprycel. Gleevec failed (little change in cytogenetics) and Sprycel at 70 mg. wiped out my normal system so that I had a Neutrophil level as low as 0.1 (dangerous) and had to stop taking Sprycel - which means I had nothing fighting CML. I had to repeatedly go on and off Sprycel to manage the myelosuppression.

I learned about Curcumin's affect on Wnt/beta-Catenin signaling (Curcumin downregulates) and on NF-?B signaling (Curcumin down regulates) - both important pathways in CML pathogenesis. I learned that Sprycel + Curcumin has scientific effectiveness in colon cancer. So I decided to give it a shot.

I started taking Curcumin and coupled taking it with low dose Sprycel, my CML numbers went into major molecular remission. And not slowly - but remarkedly in 7 months when I started putting the two together systematically. I cut back my Curcumin to 4 grams daily because to tell you the truth - I hate taking so many pills. I had a scare a few months ago when my PCR numbers kicked up - so I increased my Curcumin to the full 8 grams (as recommended to me by the literature on this) and kept it there. After six weeks, my PCR dropped back down, not just to what it was before, but another 1/2 log drop.

Is it the Curcumin that is helping my very low dose Sprycel be this effective? I don't know. What I am doing is not scientific - it is anecdotal. Dr. Cortes tells me - if it's working - keep doing it. He did tell me that my response to 20mg. Sprycel is an outlier - not typical at all. He uses low dose as a management tool (to handle myelosuppression) to build up from there. In my case, he is keeping me at this low dose - for more than a year. I continue to take only 20 mg. Sprycel. And he believes there is a chance I may get to PCRU on 20mg. And even if I didn't - God it is nice not to have any side affects. No nausea or muscle cramping (from Gleevec) or pleural effusion or hypertension (Sprycel).

Is Curcumin right for everyone - of course not (for the reasons cited above). The bruising, anti-coagulant effect I suppose is an issue. But it isn't for me. And I have low platelets. And I do enough banging around (Scuba diving for one) that I should bruise all over.

What I am doing is sharing my experience. If I can attain PCRu, it is my intent to stay on Sprycel two more test cycles and then stop while maintaining Curcumin and see if I hold PCRu.

There is no magic solution as we all know. All we can do is try - with prudence - but try. And I for one will keep searching for ways to beat this disease.

[Melanie]

Thanks for the info and the links. That is exactly what my Dr thinks too. Curcumin's ability to inhibit cell signalling, although good for working with TKI drug, may also be inhibiting my good cells. We'll see if that's the case for me. I started on the curcumin experiment because of Scuba's success with his low dosage of S and also being myelosuppressive. Although I was not taking the mega doses of curcumin that Scuba does or for as long, I do think it had to have had some benefit in helping me acheive a pretty good response, considering my history of on & off the TKI's at mainly 1/2 dose or less for the last year since dx. Hopefully all our experiences will be of help to others.

Melanie

[pamsouth]

Hi Scuba,

the 3300 mg a day of Curcumin with the other supplements I was taking and of course Gleevec did not work for me.  However now that it has been a few week since I quit taking all supplements.  I have started back on Curcumin at 1 pill 800 mg a day.  I will probably do that dose for a week or two, then increase it by another dose 2 at 800mg each.  Then just hold onto that until my next FISH.  I am only holding at CCYR . Then I may increase it another tablet.  I was taking three or four different supplement and maybe they didn't go well together.  So I would rather just do the Gleevec and the Curcumin.  I do have to take my blood pressure and diuretic pills.

I bet if I started exercising and lost a few lbs I would not need those dang blood pressure pills.  It is hard to lose with Gleevec though. I do have somewhat of a moon shape face, droopy eye lids, with a minimal amount of fluid, I control with a diuretic, Other then that my worst physical complain would be muscular skelton problems, but I had those a few years before I went on Gleevec.  I actually think the muscular skeleton problems was the CML working on me.  MD Anderson said CML had probably been working on me for years.  I do have to admit those first two years on Gleevec were bad..........  I care what those doctors say, it was nasty, but that was all that was out, and now I am use to it, so I have no desire to try out another one.

To bad my primary doc wasn't  keeping a closer eye on my CBC labs.  She was only having me do a CBC every 3 years.  Went I pulled my labs from 3 years before diagnosed.  My platelets were 75,000 high, out of range. and my granulytes were slightly off.  I would of thought that combination, would have sounded off a red alert siren.  Doc never said a word to me about it, she seemed only to be worried about my cholesterol and blood pressure and sugar. Always got my labs after that.  I found out from my husband labs, they weren't telling him everything on the report either. So now we get his labs, too.

I am convinced there is a better way to reach PCRU then overdosing on TKI'S with low counts. If I could just fine it.

PamSouth

[CallMeLucky]

Billie

Business trip to San Antonio last month.  Went out to a ranch in the evening and they had a mechanical bull.  I was the first one to get on, the guy flipped the switch and I kicked a$$ for 2 seconds, at which point, I made the decision to lay down next to the bull!

[Tedsey]

Not quite the mechanical bull, but I had a very exciting experience too!  My friend called me up last minute to go with her to a Macy Gray and Seal Concert (last night).  I have heard of both singers, but not all that familiar (I am a dorky opera fan).  Anyway, towards the end of the concert, Seal came and ran through the crowd.  Everyone had their hands up and were swaying to the music.  I figured, "what the heck" and got into it.  All of a sudden, he was right near us.  There was a huge rush of people.  So, here I was sandwiched with my arms up.  So again, I figured, I am a live!   What the heck?   Might as well enjoy the moment.  Here comes the big part.  Felt someone grab my hand, interlock our fingers and hold on tightly.  It was Seal!  Totally didn't expect.  I am a petite blonde and I don't think he could even see me down there.  It was pretty incredible.  That was my bull ride!  It will probably last the entire year or more.

I feel blessed to feel so alive and to still be alive. Sure helps to pass the time waiting for the PCR report to come back.

Hang on tight to life and Ride 'em Cowboy Luck!  (and keep on riding!!!!!)

Hugs,

Teds