12 replies to this topic

[AdamJ]

After just over 7 months of treatment I received what I can only hope is the fist of many undetectable PCR tests. I feel extremely lucky to have reached this level rather quickly. Upon diagnosis, I was prepared for a long wait to see if treatment would be effective.  Initially there were some bumps in the road resulting in false starts and drug breaks and a whole lot of worry, of course. I realize that there are many people struggling with PCR values that decline very slowly and I was somewhat hesitant to make this post out of respect for those who might consider themselves lucky to face the dilemma I mention below.  We all struggle with CML and I know that it is not fair that some people react so well to TKIs while others face a tougher time. I hope that future research will determine what causes these varied levels of efficacy so that it can be improved for everyone.

 

Now that I have reached this level, I am faced with a decision that might put me at odds with my current oncologist who is a strong proponent of taking the full dose of TKIs.  In addition to the Sprycel 100mg, I have been taking two other medicines to keep my AST/ALT values in check.  The medicine that really concerns me is the Predinisone. My doctor has told me that 10mg is a low dose and it should not be a problem for someone of my size, but I am somewhat concerned. Some quick preliminary research seemed to imply that long term use is not recommended.  Has anyone else in the forum has been treated with Predinisone to address liver toxicity?  If so, how long was the course of treatment.

 

Although my oncologist disagrees, I suspect that a dosage reduction might be a very good idea. I am wondering what people here might think.  My history is below, but I will quickly summarize.  During the 7 months prior to this undetected PCR result, I had about 5 weeks of drug break, 4 weeks of 50mg Sprycel and 4 weeks of 70mg Sprycel, with the rest of the duration on a full dose.  Basically that means just under half of my time in treatment was either no drugs or a lower dose.  There was also a short stint on Tasigna, but that was also a full dose.  I wonder if a lower dose of Sprycel could maintain the undetectable reading and possibly allow me to reduce or even eliminate the need for a corticosteroid.  At the same time, I realize that I might be putting future PCR tests in jeopardy and therefore resetting what I hope will be the 2 year clock before I can try cessation.  Do folks think that it is preferable to ride out the full dose and hope for cessation in 2018?  A little more background information. Other than the liver issues (which I am only aware of because of blood tests) my only side effects appear to be some bumps on my upper arms, some minor acne, and blurry vision which seems to have largely ceased.  I have noticed a little fatigue during times with less exercise, so I try to ensure that I stay active.  A dosage reduction, therefore, would not necessarily impact my quality of life as I am not particularly troubled by side effects.

 

I would also like to thank everyone in this group. While I don't post very often, I have been following the forum since I discovered it and it has made it possible for me to cope with my diagnosis. This would not have been possible in the days before the internet.  I am glad to be living in a time where TKIs are present and technology is able to bring together a geographically disbursed group of people facing the same issue.

[Trey]

I would not take the full dosage Sprycel at this point.  You obviously do well on a lower dosage.  We do not all need the same dosage.

 

Taking those additional drugs for ALT/AST is not good longer term.  The Prednisone and Ursodeoxycholic acid both do more than reduce ALT/AST.  They also suppress the immune system.  If you want your immunity to be built up, taking two immune suppressants will not help.  I would ditch them.

 

After the initial high leukemic burden is reduced, less drug is usually needed to keep it in check.  Regarding cessation, too many patients seem to focus on it which is a problem since most will be disappointed.  There is no definitive correlation between fast response and cessation success.  But there is a good correlation between fast response and the ability to lower dosage over the long term.

[AdamJ]

Thank you once again, Trey. I am hoping that I can convince my onc that reduction is better than continuing my current dosages. In general, do you recommend reducing slowly (I believe with Sprycel, I can drop by 20 mg at a time) or should I cut it in half and see how it goes from there.  I won't attempt this without support from a doctor, of course, but it will give me an idea of what I should push for.  My feeling is that 50mg is probably adequate to keep things in check, but I am likely to have better luck with my current onc moving down to 70mg or 80mg, but I don't think that level of reduction will help much with the liver numbers.

[scuba]

Thank you once again, Trey. I am hoping that I can convince my onc that reduction is better than continuing my current dosages. In general, do you recommend reducing slowly (I believe with Sprycel, I can drop by 20 mg at a time) or should I cut it in half and see how it goes from there.  I won't attempt this without support from a doctor, of course, but it will give me an idea of what I should push for.  My feeling is that 50mg is probably adequate to keep things in check, but I am likely to have better luck with my current onc moving down to 70mg or 80mg, but I don't think that level of reduction will help much with the liver numbers.

 

My oncologist strongly discourages cutting Sprycel tablets in half. The resulting dose is not accurate (the tablet usually does not split evenly and bits flake off). It's better to take a full tablet that is manufactured properly - usually in 20mg doses.

 

Since you became PCRU very quickly (matter of months), you could consider dropping your dose to 20mg and work up from there. Chances are you won't need to increase dose and can remain on 20mg until you want to test cessation in two years. If your PCRU doesn't hold, you can go to 40mg, then 60, etc. to find your perfect zone. I have a suspicion 20mg will be just fine for you.

 

Dr. Cortes started me at 70mg and then dropped me to 20mg. due to myelosuppression. It turned out 20mg still dropped my PCR levels fairly quickly where I remain today. I tried stopping 20mg just to test if I can hold without the drug, but my PCR very slowly crept upward (from near PCRU to near 0.1%) over nine months. I resumed 20mg and my level fell back right away to near PCRU again (i.e. < 0.01% M.D. Anderson scale). Dr. Cortes told me many times that lowest dose is best that works, but each person is different. 

 

I have no liver issues (AST/ALT). You might consider Milk Thistle to help your liver (http://www.livestron...-liver-enzymes/). I take milk thistle from time to time (especially during Christmas given all of the parties we "have" to attend). My liver enzymes are rock solid. Do not take milk thistle at the same time as Sprycel. Separate them by at least six hours.

[missjoy]

We didn't get support from the oncologist when we discussed about dose reduction. Does anyone have studies or literature regarding reduced dose is not linked to mutation? I find it hard to argue with a medical professional without anything in hand to support my argument.

[Trey]

I am a 7 year case study of the fact that dosage reduction does not cause mutations.  Dr Druker and Dr Shah both support dosage reductions, and they once said they did not support it.  It is a fairly tale that dose reduction can cause mutations.  It has not happened to anyone I know of.

[Melanie]

AdamJ, I just want to comment on your following statement...

"I was somewhat hesitant to make this post out of respect for those who might consider themselves lucky to face the dilemma I mention below. We all struggle with CML and I know that it is not fair that some people react so well to TKIs while others face a tougher time. I hope that future research will determine what causes these varied levels of efficacy so that it can be improved for everyone."

I hope you or anyone else out there never "hesitate" to post because you feel you're not worthy by some sort of standard because you responded so well or quickly and for that reason you don't deserve or qualify to have questions or concerns. We're all in this battle against CML together, regardless of the varied treatments it takes to fight this disease. All cancer, at all levels suck! As a slow responder, I can tell you that I applaud every success, especially the ones who are quick responders. It validates that these TKI's work, they're getting better all the time and more and more people are able to lead a more normal life. That's exciting and worth celebrating and talking about. Please don't ever "hesitate" to post. The people here simply want to support and help everyone they can. There's no judgement ... as it's been said before, the only stupid question or issue is the one you don't ask about.
Congrats on your amazing response and the advice from Trey and Scuba not only helps you, but also all those people reading in the background, too afraid to post about their own issues or questions.

[xxgirl]

Well said, Melanie. Hear! Hear!

Good luck to you AdamJ. I hope that you can convince your onc to try a dosage reduction and that it alleviates the need for the other medications.

[Tucker1]

I agree well said. For people like me who have sort of tried them all and watched as my PCR went up and down I joy in those who respond quickly success for some of us is success for all. And even though sometimes are tough with CML I am still here this is my 12 year anniversary dx Nov. 2004.

[missjoy]

Thank you Trey! It is a frustrating situation for patients. I hope they will soon change the guidance that oncologists follow. Gradual dose reduction and then cessation makes sense to me especially when there are adverse effects related to stopping TKI.

[kat73]

AdamJ - I agree with Trey that it would be better for your longterm health to get off the prednisone, if you can protect your liver with a lower TKI dose.  However, do not "ditch" the steroid cold turkey!  Under a doctor's supervision, you should very, very slowly taper off by tiny increments with lots of time in between.  Prednisone is a valuable but really dangerous drug.  Anecdotally, I once spent almost a year using it to battle erythema nodosum, and I certainly enjoyed the "prednisone high" that gave me energy and optimism, incredible efficiency and enthusiasm.  When I asked my (then) doctor about its magic and couldn't I just stay on it forever, he said THAT would be about the WORST IDEA EVER and completely out of the question.  Funny.  BTW, your 10 mg was the very top of what I was prescribed - it's not the highest, but certainly not a low dose you're on.

 

Congrats on your terrific response!  It's true, I feel a twinge of turtle envy, but I certainly would never want you to stifle your happy story - it lifts all our boats, ultimately.  And those at the other end of the spectrum, who aren't having the "routine" success - I wouldn't want them to keep away, either.  Our "identity politics" is that we all have CML!

[AdamJ]

Thank you everyone for all of the responses. I have another appointment in a couple of weeks and will again ask about a Sprycel dosage reduction and beginning the process to wean off of the prednisone. I have been anxious about it for a while as I know it is not a viable long-term solution for me and I will soon have been taking it for 6 months.  I especially appreciate the advice about not immediately going off of it at once.  I suspect it may take another 6 months just to get off of it completely. I have noticed the "high" that Kat mentions above and I will certainly miss that in a way.  Of course, I am also wondering which side effects, if any, have been masked by this drug.  Only time off of it will reveal that. 

If my doc does not support the reduction in prednisone, it will be time to make a change for sure.

[hannibellemo]

Congratulations, Tucker1, on your 12th year anniversary! It obviously hasn't been easy for you and yet here you are!

 

AdamJ,

 

My husband has just been dx with polymyalgia rheumatica. He may have to take steroids for a year or more and I am not happy with that prospect, but the alternative for him is severe muscle pain in the pelvic girdle and shoulder girdle area.

 

9 months into Gleevec I developed severe liver toxicity, ALT 1500+ and AST 1300+. Ultrasound revealed no damage at that point. I had found a very small Italian study of the successful use of steroids in combating liver toxicity with Gleevec and asked to try steroids. They weren't interested because of the potentially severe side effects of the steroids. I was switched to Sprycel.

 

I developed a large pleural effusion 2.5 years in on 100 mg. I was switched to 50 mg. and have done well, reaching undetected. I also believe taking the lowest effective dose of these drugs is the way to go and I want to see what that dose is for me. Maybe this is it, but I won't know until I try. Reducing your dose to 50 mg is certainly a reasonable option and, in my estimation, better than taking steroids indefinitely. Even if a reduction in dose only lowers your enzymes to under 100 you should be able to stop the steroids.

 

Good luck!