15 replies to this topic

[acb]

... which of the drugs would you choose?  I know several people on here didn't really have a choice regarding first-line treatment when they were originally diagnosed -- Gleevec was the only option. So, pretend that you just found out today that you have CML (with the same counts, blasts, FISH, PCR, etc. as you had originally at diagnosis). Also pretend that you had all the knowledge you now have about CML, all 3 drugs currently available and their potential side effects. (I guess, if you want, you can even throw in the new trial drugs for the sake of discussion.)  So, what is your choice?

[I was diagnosed on July 9, 2010, and I *think* I was one of the first ones (at least of those who post here) who was given Sprycel as first-line treatment outside of a trial. It wasn't even approved by the FDA at the time that I started.  I do wonder every night when I take it if I made the best choice. (Actually, not sure it was really my choice, my onc. STRONGLY encouraged Sprycel.)  Not that I am complaining about Sprycel -- I have had excellent results and not a lot of horrible side effects (although some of them do scare me, like increased BP, heartburn, flushing). I do also worry about the long-term effects (to my heart, lungs, etc.) with the potential P.E. and pulmonary hypertension side effects. I often say that I will probably die from one of the side effects but still be PCRU, not that it will matter at that point.

I am going to think some more about my answer to the question.  I suspect I will still pick Sprycel, but starting at a lower dose than 100 mg.  I started on 100 mg in July 2010 (PCRU Oct 2010), and switched to 70 mg a month ago. Assuming I can maintain PCRU at 70, I would like to eventually go down to 50 mg. However, money may change my answer after I think on it some more. My husband is a teacher, so our health insurance is horrible. I fork out a ton of money for Sprycel, so I probably should pick Gleevec. If I knew back then that I would be spending over $10k per year out of pocket, I definitely would have picked Gleevec.]

Thanks!

[mariebow]

I think I would pick tasigna. which I am on now.  Just started about six months ago. 

[ChrisC]

Hi acb,

Good question. It is so individual, the starting conditions at diagnosis; so individual, the response to each TKI;  what we are really needing are best guidelines under specific individual parameters, in order to determine which TKI would indeed be optimal in each case, which I understand is an area of current study. Come on, researchers!

A question that was recently discussed, and that I'd love to know more about, is whether being treated first with hydroxy, to bring down the WBC prior to starting any TKI, later tends to make extremely low counts interfere with treatment, such that one needs to either repeatedly take a break and/or a vacation and/or reduce the dosage from the TKI until counts increase, or one needs infusions (running the risk of adverse reactions/side effects) in order to keep taking the TKI, to keep agressively treating the CML.

Do we know the later effects on blood count when one takes hydroxy? Is it still the best starting treatment, or just the accepted standard?

What I've read here is that perhaps most folks are prescribed hydroxy, with WBCs much, much lower than mine when I started G. And I read here many low blood counts while on TKIs: is there a relationship here, does anyone know?

I first had leukapheresis at dx for a week to reduce my starting WBC (459+K, but with completely normal platelets), then I started Gleevec 400mg when I reached WBC 121K, then I was sent home from the hospital. I did not take any hydroxy to reduce my WBC further.

The side effects to G grew to be too much in the next months, such that I went to 300mg, then 200mg, then had a month's Gleevec vacation (and my WBC increased to 13+K, and other counts went wacky), and I restarted G at 400mg for a week while I awaited my Sprycel 400mg.

My point is that once I started Sprycel 100mg, within four months I was PCRU (0.000, over 5-log reduction), and remain so, with no increase ever measured, three years later. That is, I responded quickly and deeply to Sprycel, and after two years steady PCRU, I received experts' permission to stop taking a TKI, as long as I had regular blood work done, and that I agreed to restart a TKI if there was either a large sudden increase in WBC or a couple of consecutive significantly increasing WBC results.

In a couple of weeks I will celebrate being off Sprycel for one year. Still PCRU. No TKI.

Since I don't know why this has been successful — why for me and not for many others? — I am questioning whether anyone else received leukapheresis instead of hydroxy, or was just never treated with hydroxy at all, for any reason, and then responded quickly and deeply to any TKI, whether as first line or, as in my case, second line TKI?

If I didn't wonder about this, naturally I'd answer your question with I wish I'd had Sprycel from the get go! But who knows how it would have worked then? Was it the leukapheresis? The lack of hydroxy? The one-two punch of G then S? Something else? Sigh.

We all want so very much for a) no one to get CML ever, and until that is the case, for there to be set up a simple system to correctly determine the best individual treatment.

ChrisC

Message was edited by: ChrisC I want to correct the Sprycel dosgage mentioned: it was always 100mg, not 400mg. the edit feature just keeps "loading" the text and I can't get at it. CC

[luvmybees24]

Tasigna. I have been on it for 9 months and have never had any issues. I reached CCyR and a MMR at 5 months. I get my latest PCR results tomorrow and am hoping for a big fat ZERO!

[Sneezy12]

I'm confused. Are you on Sprycel as per your first post above, or Tasigna as per your last post, and if the latter, why did you switch if you were doing well on Sprycel? Regards, Frank

[Rissa]

I would pick gleevec.  That's what I was given at dx and that's what I'm still taking.  Since sprycel and tasigna are supposed to be more powerful than gleevec, I'll have the option of using those drugs later on if gleevec stops working for me.  My oncologist really didn't give me any choice in the matter, but I'm glad he chose gleevec.

[Susan61]

HI:   For me when I was diagnosed I did not have a choice of any TKI, therefore, after heavy duty doses of Interferon and Ara-C, then onto Hydrea till they could figure out what to do with me my only choice was to do the trial for the Gleevec.  Being on Gleevec 12 years this Oct., and other than the puffy eyes, fatigue, and leg cramps, I have not gone through the GI problems or any of the other things which made people want to switch. Even if I had wanted to switch, the other TKI drugs were not in existence for me.  Then looking at the protocol for Tasigna, and the issues with Sprycel with the PE etc. I am the type who would most likely have had a problem with the other TKI drugs.  I do not tolerate medications well at all, and really feel blessed that I was able to do the Gleevec and reach PCRU.

    Looking at everything available now, my choice would still be my Magic Bullet Gleevec.  Plus I have been on 400mg. since day 1, and never had to increase to attain my PCRU level.

Susan

[John]

I would still start with Gleevec only because it's the first to be going Generic in Jan. 2015.  So if it works well for and there is ever a financial or insurance issue it would be good the be able to take the Generic if needed.

John

[mariebow]

Oh wow, this is so funny!  I just read the original post title and realized it said "For the Experience"  and I gave my two cents,  Maybe next time I will read a post more carefully.

[Susan61]

HI Marie:  You answered okay.  You said Tasigna, as it is probably doing its job for you so why would you consider another TKI.  You probably would not consider one of the other drugs , unless the Tasigna was giving you trouble with side effects or not getting you where you want to go.  I hope your doing very well, being your on Tasigna for 6 months now.

[Tess]

I have been on 400mg gleevec since 2006 and reached pcru at 10 months,  I have had a great response and when diagnosed was offered only gleevec  because i believe the other drugs were still in clinical trails.

If i was diagnosed today (not knowing how well id respond to treatment)  I would pick gleevec because  i would want to go with the drug that had been out the longest with more research on long term effects.  If it didnt work then i could switch to the newer drugs.

[mariebow]

oh no susan61, I was saying that I am on the Tasigna. thanks for the comment

[Trey]

No right answer.  I would start on any one of them.

[CallMeLucky]

Hard to say, probably Tasigna, but then I wouldn't have the experience with Gleevec to compare it to and would probably be wondering if I would feel better on Gleevec.  I doubt the grass is any greener.

That being said I am getting closer to switching meds.  I know I say that all the time and I am scared to pull the trigger, but I actually had a conversation with my wife about it last night to tell her I was planning to do it after our vacation in Nov.  I have an appt with onc in a few weeks and I will discuss.

My decision will also be heavily influenced by the outcome of my other pending health issue.  God willing it will not turn out to be a malignant issue.

[vickicorinne]

Glee VEC it is called the miracle drug. Dr Oz even had it on his show . My son reached remission in the first 18 months. Along the journey  he made every milestone on time like GLEEVEC said he would compared to all his numbers .  Great subject thank you for posting