5 replies to this topic

[jenz]

All,

Well I'm upset to report that my pcr did not remain the same on the lower dose of Tasigna (450 MG per day). After one month of being on this lower dose it actually has risen, now it wasn't a significant increase but this is definitely not the direction we want to see. So my options are to either go back on the higher dose (300 MG X 2 daily) or try a different drug Sprycel (100 MG daily). I am inclined to raise my dose since Tasigna has worked so tremendously well for me.

Currently I am at 0.0023 30 days ago I was at 0.0007 so obviously staying at the 450 MG per day dose is not an option.  I was dx in Nov of 2010 with a pcr of 1.9.  I reached ccyr in 08/29/11 and MMR on 12/5/2011.  I was suboptimal on Gleevec for the first six-months of that before switching to Tasigna which got me to MMR at 13 months.  So overall I have had a very good success rate on Tasigna.

So the big question is do I go back on the higher dose of Tasigna or start a new TKI to see if I feel better?  The reason I even tried the lower dose of Tasigna was due to side effects impeding my QoL.   My doctors recommendation is to switch to Sprycel rather than staying on Tasigna even at the higher dose. She believes I could feel better on Sprycel despite knowing it comes with its own baggage.

What are you guys thoughts, Trey? Scuba?

[CallMeLucky]

Is it you or your doctor that feels this "increase" is not acceptable?  From a a practical standpoint there is no difference between .0023 and .0007.  You could run the same sample multiple times and get a wider variable range.  So if it is you that is not happy with it, I would say be patient and give it another 30 days and see what happens.  If it is your doctor, then it is up to you what to do.  I certainly wouldn't tell you to not listen to your doctor, I don't know more than a doctor, but I would find it odd if your doctor really thought there was a difference between those two results.  I know my doctor would consider those the same.  My PCR went from undetectable to .004% and she does not consider it a change in status.

[Marnie]

Yep. . .what Lucky said. 

[scuba]

Tasigna and Gleevec are similar drugs. The big difference is that Tasigna binds more tightly to the protein socket needed for CML cell survival (ATP). Block the ATP** socket and CML cells die.

When I was on Gleevec, I had a choice either to take Tasigna or Sprcyel when it was clear that Gleevec wasn't working for me - although I am thankful to Gleevec for having gotten me into hematological remission quickly when I was first diagnosed. I felt I would rather than try something that worked differently than a better version of Gleevec. I could always go back and try Tasigna if Sprycel was a problem.

I started on Sprycel and it had an immediate impact - the dose was too high at 70 mg. and caused deep myelosuppression. My dose was lowered to 20mg(*). by Dr. Cortes at M.D. Anderson and since then my CML level as measured by PCR dropped 3 orders of magnitude. I am in MMR currently and will have a new PCR test done in 3 weeks. Over the last two PCR tests my PCR was halved and then halved again (following the initial big drop).

My recommendation to you is that since Tasigna at high dose gives you bad side affects, you might consider starting on Sprycel at 40-70mg to see if it drives your PCR back to undetectable. And if it does - you could lower your dose further to see if you can maintain it at that level. You are very low now and have time to try the experiment. If it works, you would be on a low dose of a new TKI and not have the side affects.

On 20mg. of Sprycel, I have zero side affects. If it wasn't for the fact that I take this pill every night, I would not know I have CML. Side affects are not trivial as many people here can attest. When I was on Gleevec, I had the leg muscle cramps and the nausea. Minor, compared to others, but a pain nonetheless. If a method exists for you to get to PCRu (or very very close) on a low dose of whatever TKI one takes - it's worth experimenting to find out (in my view) what that is.

* I do take Curcumin along with Sprycel. It is not known, but postulated, that Sprycel + Curcumin enhances the Sprycel effectiveness in CML. It is possible that low dose Sprycel by itself may be insufficient to maintain PCRu (or close to it). I am my own lab rat to find out. So far my PCR numbers have fallen significantly while only on 20mg. Sprycel. It may be due to the Curcumin augmenting the Sprycel.

** ATP = AdenosineTriPhosphate

[Usurugger]

Scuba, hoping for a quick result as well. Started at sprycel 100mg and only on week 2 (started 2apr12). Haven't noticed any significant side effects yet other than a mild morning headache.

[Trey]

If you are getting PCRs every 30 days, then maybe you could stay with the lower dose for another month to see if the next PCR also increases.  Then make a decision.  Do you feel  better on the lower dosage Tasigna?