6 replies to this topic

[HeatherZ]

So, I haven't been on in a while - my summer was a whirlwind.  I saw my Onc today for results from my lateset round of bloodwork.  My PCR is still hovering around a 2.5 log reduction after 2yrs on Gleevec.  The last couple times I have gone I have expressed my concern that I am not getting a deep enough response and how I am concerned for my long term prognosis.  Today I expressed those same concerns and also told him my side effect cycles are just killing me.  My cycle of bone pain and extreme fatigue lasts about 4-6 weeks and during that time all I can do is go to work and come home to bed.  I am constantly retaingin fluid to the point that I can hear it in my ears and my face always feels stuffy.  He is still really hesitant to do a drug switch because he is not convinced I will get any deeper response from Sprycel and is afraid my side effect profile will get worse.  My main concern is my lond term prognosis and would feel a lot more comfortable with a deeper response than 2 1/2 logs.  So anyway, as we debated and he tried to talk me out of a drug switch, I mentioned that I read from several people on here that Dr. Druker does answer emails and would probably offer his opinion on a drug switch.  He said he would email and give me a call.  I'm now second guessing myself if I did the right thing or not. 

[CallMeLucky]

If he is concerned about Sprycel side effects then what about Tasigna?

You shouldn't have to stay on Gleevec with the side effects, especially if you are not at MMR after 2 years.

Long term prognosis is likely no different, but why chance it?  If you felt perfectly fine, then maybe you say "why rock the cart" but you feel like crap and your response could be better.

You and I are around similar time lines, same age etc.  My response has been good, but I am fed up with the Gleevec side effects at this point.  My muscles hurt so much I am concerned about long term damage based on the way I feel.  I am seeing my onc next week and will be discussing a change of drugs over the next couple of months.

Best of luck....

[HeatherZ]

Thanks Lucky - I am actually the one that mentioned Sprycel.  I don't think I would do well with Tasigna - just the kind of person I am I don't think the whole timing thing would be a good fit for me. 

And you are correct - we are sort of like CML twins; same ages and diagnosed in March 2010.  I believe you have had a much deeper response than me, though and I constantly battle anemia.  In fact, today I left the office with an order for 3 bags of iron.  (iron pills don't absorb for some reason so when I get too low I need the IV iron.)

[Trey]

You should switch drugs.  If the Gleevec had a benign side effects profile for you, that would be one thing.  But an "OK response" mixed with bad side effects should prompt a switch.

[BY196]

Hi Heather:

You did the right thing. I think your onc is being too cautious.

A 2.5 log reduction is not bad, but I disagree that you would not likely get a deeper response with Sprycel or Tasigna.

I was in a similar position to you, though I'd been on Gleevec less time: I elected to switch to Sprycel after 13 months on Gleevec and a 2.5 log reduction. (I felt as you do about the dosing with Tasigna, though I have subsequently had to deal with more complicated dosing and not eating for another med and I realize I was probably overly worried about that.) I was having a lot of side effects, including some I didn't realize I was having until I stopped having them. Some of my side effects turned out to be due to peripheral thyroid hormone resistance (TKI-caused), which I have been treating successfully with levothyroxine.  But I switched to Sprycel before the thyroid treatment started and the biggest change was coming out of the mental fog I had been in. My husband noted after a week that I seemed much more "with it" and present in my life, even though I was still not feeling great.  I was able to work much more productively (my work involves primarily reading and writing, very analytical, and while on Gleevec I was pretty hopeless at it), My muscle pain also improved, though it didn't go away completely, and I have had no nausea after taking meds or morning digestion troubles.

Oh, and two of my three PCRs since the switch have been undetectable. The third was a tiny blip up, which settled back down the next time.

Beth

[Tedsey]

I am so sorry for your struggles.  I have been there too.  I don't think a drug change would hurt at all.  It may make things better.  Like you, I had severe anemia on G and after 9 months, I did not continue to get a reduction.  My onc suggested a change.  She felt things couldn't get worse, but may get better.  She was right.  I attained CCyR after 3 months on Sprycel and have stayed there for 2 years.  Although still slightly anemic, my blood counts improved (I was below 6 without shots and transfusions).  I started running and can now keep up with my toddlers.  Before, I could not even breathe.  I am so grateful.  If your onc won't write you a script for a new med, it defeats logic.  Find an onc who is more compassionate about your side effects.  It is clear they decrease the quality of your life and you are suffering.  Although I was extremely grateful for Gleevec, I sure suffered on it.  My life was NOT "normal" until I switched drugs.  It was a miracle.  Despite some low counts, I do not notice any side effects directly related to Sprycel.

I wish you the best,

Tedsey

[Lynne D]

Hi Heather, I am actually in Oregon at the moment (from NY/CT area) and I have an appointment with Dr. Druker on Thursday. I was on Gleevec for 5 years and suffered much like you. I never got to PCRU and switched to Sprycel in Sept. of last year. After last years visit with Dr. Druker we decided to go down from 100 mg of Sprycel to 50. My PCR has never been lower. I was also on Tasigna and had a fair share of side effects. I am not saying that Sprycel doesn't come with it's own fun party but after the initial couple of months and the lower dosage, I did much better. I also went gluten free because I had such itching and rashing I thought I could have gotten a sensitivity problem. I have been gluten free since April and I do NOT itch nearly as bad and the best part is that I no longer retain that horrible 25lbs of water that I did on Gleevec. My face isn't swollen and puffy.

All in all, I am very grateful that I switched to Sprycel. The reason he allowed me to drop to 1/2 dose is because although I wasn't PCRU on Gleevec my #'s were always steady and not increasing significantly. He said there are many people who have sensitivity issues with TKI's, it is real and you have to deal with it patient to patient. So far my #'s haven't really moved from last year. For me, it was the best decision in 7.5 years.