14 replies to this topic

[Txmom.4]

Hello,

I get on from time to time, has been awhile.  I was dx last Sept and started Sprycel 100mg/day in October.  I got down to 0.006 and all was well.  I had some initial side effects like swelling and shortness of breath, both improved.  In March, I started getting blood in my stool (gross, sorry). It started out just a little and increased over a couple of weeks.  I contacted my oncologist, he at first thought it may be hemorrhoids/fissure, and since it at first came and went, I thought he was right.  When it didn't clear up and got worse, I went for a colonoscopy, it showed a whitish rash & irritation all throughout my colon. Biopsies showed it to be an immune system response (weird reaction of t-cells), probably caused by sprycel.  Apparently there are just a couple of documented cases where sprycel caused a reaction in the colon like this.  Anyway, I took 2 weeks off the medicine and went back on at half the dose (50mg/day).  All was well and I was feeling great.  BCR/abl down to 0.003 until 2 weeks ago when I started again with the blood in the stool.  Went for another scope (fun fun) and saw same kind of white patches, but much less and not as irritated looking.  I have been off sprycel again for a week, now onc wants to start tasigna.  I really want to give the sprycel another try but he said he doesn't want my colon to be affected and this kind of reaction is rare so "we are pretty much in uncharted territory."  I am so upset!  BCR/abl down even on 50mg and working so well!  And as an added bonus onc says there is nothing to say my body won't react to other TKI's like this as well!  Has anyone had these kinds of problems? I don't want to get used to another medicine when one works so well!  I asked the GI doc if he thought this kind of reaction I had could harm my colon, he said he really doesn't know due to the cause and it being so rare.  I see onc monday for EKG, labs and meeting with onc.  Tasigna frightens me and it took me awhile when I initially started the prycel to get used to side effects.... even though those really dramatically decreased.  What if Tasigna doesn't work? I know it works differently than Sprycel

[janne]

Txmom.4,

First of all, congratulations on your great response to Sprycel, other than the reaction in your colon !!  We tend to want to hold onto what we know is familiar to us and I think many of us have felt this same way that you have expressed as we pondered changing drugs. Do not be frightened concerning the switch to Tasigna. I made the switch from Gleevec to Tasigna and I was apprehensive as well, but there are effects that I had with Gleevec that were very bothersome for me that I do not have with Tasigna and I am grateful for those changes. Someone recently on this board stated that they had made the rounds from Gleevec to Sprycel to Tasigna and found that Tasigna was the best of the three for them personally. Sprycel is different than Tasigna and there are MANY on this board who can tell you exactly what the differences are in how they each treat the disease. I do hope that perhaps the differences between the two chemically will make a difference in how your colon responds. I await the wise reponses of others on this board ...Sincerely, Janne

[Sneezy12]

Have you consulted a true CML expert, and also been evaluated for Ulcerative Colitis, etc.? Regards, Frank

[Trey]

This could be an issue related to off-target inhibition of c-Kit by TKI drugs.  Gleevec and Sprycel appear to cause more  c-Kit inhiition than Tasigna.  This is known because Tasigna does not work as well as Gleevec for colon GIST tumors, which requires c-Kit suppression for treatment.  Sprycel also has shown that it inhibits c-Kit more than Tasigna.  For these reasons I would try Tasigna. 

But you may also have an ulcerative colitis as suggested by Frank, and this can be caused by TKI drugs.  A switch may help, maybe related to my discussion in para 1.

http://www.ncbi.nlm....lth/PMH0001296/

[CallMeLucky]

" I am so upset!  BCR/abl down even on 50mg and working so well!"

I think what may help you with the decision is changing your perspective about doing "so well" with Sprycel.  You actually have a rare side effect from it and for that reason it makes sense to try another drug.  It is highly likely you will do just as well on Tasigna with the only real inconvenience being that now you have to take a pill twice a day.  Sprycel has been known to cause immune system issues which is not something you hear about as often with the other TKI drugs.

You are having a very odd reaction to a powerful drug.  Maybe it would never cause a problem, maybe it would cause colon cancer if it continues for an extended period of time.  Who knows?  The question is do you want to be the one to find out when there are other perfectly suitable drugs to treat your CML that probably won't cause you to have this problem?  I suppose if Tasigna and Gleevec for some reason didn't work (highly unlikely) you could always go back to Sprycel and see what happens, but more than likely the other TKI drugs will work fine and you will not have to deal with this rare and mostly unknown side effect.

Best of luck

[jamietoftum@hotmail.com]

Can you get in a trail of the Ponatinib?  I am still on Sprycel but on a lower dose.  I have exhausted Gleevec and Tasigna, and had a Colonoscopy after the GI issues got worse.  After meeting with naturalpathic Doctor and allergy testing, have added Probiotics, and homeopathic medications and my GI issues have lessened.  .

[Txmom.4]

Thanks to all for the input!!!!  Frank, I see a hematologist/oncologist who is the best in our area.  I haven't been seen anywhere else, but feel confident in this physician.  I just think I have some bizarre side effects.  Trey, I am going to bring this reaction you mentioned up to my MD this afternoon.  I know at this point it is not ulcerative colitis (have had a colonoscopy and flex sigmoidoscopy), but I think he is worried it will turn into that if I stay on Sprycel.  Janne and CallMeLucky, you are both right, I am scared of trying a new drug, I guess I am also frustrated b/c you hear you have this disease, and by the way this medication really is working, but no, we now have to stop it!  I realize everyone on here has had to deal with problems & side effects and has ups and downs, I guess I am whining a bit!!!  I am scared of the unknown with a new drug, but oh well, guess I am going to just try and suck it up!  Jamie, I have been on a probiotic, am wondering what homeopathic meds you are also on.  Thanks again everyone! It is so nice to be able to get advice from those who have so much knowledge & experiences!

[scuba]

I am going to weigh in here and welcome Trey's dissection:

Curcumin is excellent for colon health. And in fact, Sprycel + Curucmin has been documented as a beneficial combination for colon cancer treatment. You have overactive T-cells perhaps in response to the c-kit inhibition. Curcumin downregulates pathways involved in T-cell expansion and is generally a strong anti-inflammatory. This may be a good thing in your case and serve to "calm" what's going on in your colon while enabling you to continue on Sprycel.

For what it is worth, I take only 20mg. Sprycel and am close to your bcr-abl levels. I also take a lot of Curcumin every day as well.  It is possible you could reduce your Sprycel further like was done to me and still have outstanding response. Dr. Cortes prescribed the 20mg. in my case.

http://www.altmedrev...ns/16/2/152.pdf

(note: A friend of mine started taking Curcumin six months ago for her Crohn's disease. Her symptoms have since disappeared. Curcumin is very good for the colon.)

[TeddyB]

Hey Scuba.

Any interaction/problems with taking Curcumin and Gleevec? (I know there can be some blood issues thinning etc)

What i need to know is, will the effectiveness of Gleevec in some way be affected by say 500mg-1000mg of Curcumin pr day?

I have some Curcumin 500mg capsules i might try.

TXMom.4: I wish you the best of luck.

[CallMeLucky]

My experience with Curcumin and Gleevec is anecdotal.  It did not hurt the effectiveness of Gleevec, if anything it helped or it did nothing.  My PCR bounces in and out of detectable range.  I had a bit of a bounce up from PCRU so I started to take Curcumin and I went PCRU again.  Was that Curcumin?  Maybe, but it very well might have gone back to PCRU again on its own.  I have had some issues with subcutaneous hemorrhaging that may or may not be related to Curcumin.  My platelets have held steady just under 200 and Curcumin did not cause any change with those.  Based on the skin issues, I had stopped taking Curcumin but I have started again now because I believe it is beneficial.  Watching to see how it goes.

[scuba]

Hi Teddy,

I can't speak to Curcumin interactions with Gleevec (see CallMeLucky's reply above) as I only have tried Curcumin with Sprycel. I do know from communication with Dr. Aggarwal that anything less than 8 grams of Curcumin is not effective with cancer. So chances are taking 500mg-1000mg of Curcumin per day has no effect on CML regardless.

However, Curcumin in that low dose (1000mg), may be effective for inflammation. The standard dose as reported on the labels of Curcumin suppliers is usually in reference to arthritis and other inflammation related pain. I know from personal experience that Curcumin definitely is effective against arthritis. The arthritis I had is gone.

But to repeat, I do take a lot of Curcumin. I take a lot of Curcumin because I am interested mostly in Curcumin's "potential" in attacking CML.

[TeddyB]

Thank you scuba and CallMeLucky.

8 grams seems quite a lot, i would have to take 16 capsules pr day at 1$ pr capsule

Ive been following your progress since i joined the forum scuba, and i hope you do well on 20mg sprycel and 8g curcumin.

How much did you take CallMeLucky?

PS: Sorry for the hijack, i will take this to another thread if i have more questions.

[scuba]

8 grams is certainly a lot which is why I am experimenting with newer formulations that report better bio-availability so fewer pills are needed.

There is a great deal of research under way to improve the bioavailability of Curcumin.

Regarding cost - That is why I am experimenting with newer formulations.

[CallMeLucky]

I was taking up to 1600mg per day.  I recently had a conversation with Scuba about this and I too am put back by how much curcumin I would have to take to be at "therapeutic levels". 

I should note that part of my interest in this goes beyond CML and relates to another potential health issue I may have.  So I have not decided anything yet.

[TeddyB]

Thank you both for answering.

I will probably try 1g pr day to start with, and see how it goes.

Teddy.