27 replies to this topic

[chevyflame]

I am taking  now 40 mg of Sprycel with 30 mg of pioglitazone.     

The last PCR test was good. The pleural effusion is less.

 

Hi Survenant, How long have you been dealing with your pleural effusion  and how much of a decrease did you experience with this additional drug?

I was diagnosed 12/13 started Sprycel @ 100mg but had to reduce the dose due to severe side effects to 70 then 50  then 20 finally 20 every other day.  My oncologist stopped Sprycel 12-16 and started Gleevec to alleviate the pleural effusion. I only lasted 40 days on Gleevec as I developed a severe full body edema along with the pleural effusion. I had been undetectable since June 2015. I have been dealing with a severe bilateral pleural effusion since  6-2015. The dose reduction did not decrease the amount of the pleural effusion. My oncologist agreed to stop Sprycel for a three month period, testing at 6 weeks and again at the 3 month deadline. Unfortunately,my BCR-ABL came back at .039 at the six week deadline. I'm back on Sprycel  20 mg daily and will have another catheter implanted to cut down on the hospital visits for thorocentesis.  I am not a good candidate for Tasigna because I've had a stroke have a stent in one carotid artery and am evaluated on a regular basis to track the other carotid artery. We're wondering if Pioglitazone may help to reduce the pleural effusion.

[Buzzm1]

Kat, what were the dates of your 0.02 and 0.47 testing?  If the readings are correct, it shows that your PCR level was doubling every week: 0.04, 0.08, 0.16, 0.32, etc..  With that rate of increase, and depending on the  amount of time between the last test and restart, your current PCR level could easily now be much higher.  At this point there isn't much to be gained by frequent testing other than to determine an initial starting point, if your onc. thinks that is at all necessary.  Other than that, hopefully t's back to quarterly testing.  From the Stop Studies, it typically takes longer to regain MMR and PCRU, than it takes to lose them, with those who initially struggled to reach MMR and PCRU, taking the longest, but the good news is, you will get there.  

[kat73]

Buzz - The first was at 5 weeks off Sprycel; the second was at 9 weeks off.  Onc has me getting another PCR done 6 weeks from the 9 weeks one.  So far, what has come immediately back is the mild edema, paler skin, the screwy eyebrows, and the heavy legs.  I still have energy and am cheerful, although the last couple of days I have felt the breath of the black dog . . .

[Buzzm1]

Kat, it will be interesting to hear the result of your next test.  Depending on the number of days between your 9 week test and the start of Sprycel 50mg, it shouldn't be surprising if the next test exceeds 0.47 as you were ramping up fairly quickly between the 5 and 9 week tests.  Glad you are feeling moderately better.  

[kat73]

I thought I was not supposed to be alarmed at the speed   Well, I will ask the onc at next visit (June).  I started back on Sprycel 8 days after the 0.47 PCR; it will be six weeks after the start date that the next PCR test will be done.  I would like to think that, since I can feel the side effects already, the Sprycel army is in full battle mode.

[Buzzm1]

I thought I was not supposed to be alarmed at the speed   Well, I will ask the onc at next visit (June).  I started back on Sprycel 8 days after the 0.47 PCR; it will be six weeks after the start date that the next PCR test will be done.  I would like to think that, since I can feel the side effects already, the Sprycel army is in full battle mode.

Kat, yes the Sprycel is again working to reduce the the level of CML, but please don't be alarmed if the PCR test, six weeks after restart, shows a level higher than 0.47, since another full week had elapsed from that reading until restart.  Just realize that the CML level is being reduced.  If any others on this discussion forum have data relating to this issue, please weigh in.  

[gerry]

It will be okay kat :-). The Sprycel will be getting the CML under control. We have had a number of people in the TFR group who have not been able to remain off and have had to return to a TKI. I am not aware of any of them having the CML continue to get out of control.

[kat73]

Thanks, Gerry.