Hi Denise!
Bill was on Gleevec for about 9 months with good control of his blood values, spleen size, and overall health. He did have some side effects, but nothing major. Achiness, mainly....less than most people seem to report here (though of course if you're doing perfectly well, you're a lot less likely to come here to see if others are experiencing the same thing(s).) So we were quite happy with the status quo until his WBC count started climbing rapidly and his hemoglobin went to 5 while we were on vacation last summer. Switched to Sprycel at that point and he temporarily responded.....not as well as to the Gleevec, though, and with much stronger bone/joint pain as a side effect. Tasigna had almost no effect. Gleevec was pretty much a walk in the park for Bill......too bad it didn't work forever.
The drug trial coordinator at Moffitt Cancer Center in Tampa (where we go and see Dr. Pinilla, Dr. Deininger is out in California? someone else must've mentioned him/her) said that most patients seem to feel better after a month. Bill felt somewhat better after a week! Hope you experience the same thing. What we're finding with Bill is that he's responding almost TOO well and had to go off the drug for a week because his WBC count was 0.9k! But they started him back on and he's done pretty well since then and his WBC count had rebounded up to about 7,000 on Monday at his last checkup.
He's on 45 mg once daily and I thought sure they'd reduce the dose at the 4 week checkup, but they didn't. I believe the thinking is that they want to take a really hard swing at the T315i cells to try and eliminate as many as possible as quickly as possible and support him as needed with blood and/or platelets. They told us to expect that Bill would possibly need more transfusions initially, but to stay the course and let his body try to bounce back on its own. At 70 yrs old, that will be a slower process than for someone your age, but they feel pretty confident/hopeful that it will, given some time.
He has his next CBC on Friday and that will tell us a lot more. Next Moffitt visit is May 7th, and that will be his first BMB since starting ponatinib. Already his peripheral blood is showing a good reduction in blasts....he was in accelerated/early blast phase when he started ponatinib.
Overall, I'd say the improvement is real, but somewhat intangible. His numbers are decent, but not what I'd call good (platelets and hemoglobin are his all-the-time problems). But the difference in his attitude is fantastic. He's not always got the energy to do everything he wants to do, but at least he's planning, know what I mean? 2 months ago, he couldn't get out of his bathrobe except to go to bed. Now he's got 4 things he wants to get accomplished tomorrow and hasn't been in his bathrobe for a month. Well, he did put it on this morning and said Good grief, it just occurred to me that I haven't been living in my bathrobe anymore! I don't think this is just a suggestibility issue......I think initially you could "feel better" if someone told you the meds were going to make you feel better, but that's not sustainable over a 1-2 month period.
I'm really hoping this drug is going to bring your CML back under control. I was thrilled to hear there's another one or two coming along behind it too.
I am a bone marrow donor, so while I hope you never have to go there, maybe I'm your Match :-D Believe me when I say if I could give ALL of you my bone marrow and make you well, I'd be there for you in a heartbeat. I've got plenty I'm not using and there's more where that came from.
Best wishes to you!
Beth
