Advanced Member
Posted 23 May 2017 - 11:50 AM
Wow. I am definitely going to discuss bosutinib with Dr. Smith week after next.
Addendum: Since bosutinib doesn't affect cKit, I wonder if you've noticed, Sassenach, if the cadaver-white skin color is gone? Also, how's the overall edema (which I think is part of the PDGFR picture, also not worked on by bosutinib)?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Member
Posted 23 May 2017 - 01:29 PM
I'm still pretty cadaver colored--but then, I was before imatinib anyway. I might be just a bit less ghastly. Edema is better too! I would ordinarily be puffed up like a toad with this nice weather (temps between 60 and 85 caused puffy face, swollen ankles, etc. Charming.). Some nausea is still with me, but taking it at bedtime helps quite a bit, even if the stomachache last week hit in the middle of the night because of that.
I do have the loss of appetite that one poster mentioned. Occasionally I have to make myself eat something because I'm fading but not hungry. I'm trying to keep meals at regular times and such to prompt me to eat and so I might feel hungry at particular times. Oh, and the itching. I don't have a rash, but have fits of itching. I did also stop my antihistamine since pollen is dying down and the itching can be a withdrawal from that, so I'm not really sure what to chalk it up to.
I realize side effects could still crop up later on, but I'm happy with the improvement so far.
DX March 2015, WBC 25,000, FISH 95%, PCR 19.181
Started Gleevec 400mg May 2015
August 2015--FISH 9%, PCR 0.672
November 2015--CCyR, PCR 0.171
February 2016--PCR 6.830 (let it be a warning not to take a supplement with tyrosine in it)
May 2016--PCR 0.115
September 2016-PCR 0.402
December 2016--PCR 0.256
March 2017--PCR 0.152
April 2017--switch to Bosulif
August 2017--PCR 0.109
November 2017--PCR 0.278
Advanced Member
Posted 24 May 2017 - 10:52 AM
Thanks, Sassenach - I hope it all will be transient, especially the nausea and stomach pain. I remember being so utterly bewildered in the beginning (on Gleevec) when I felt so incredibly BAD ALL the time and my then-onc just cheerfully ignored it all. He had nothing to offer, of course, just useless nostrums. But if he could have just told me, "It can be tough, you're not dreaming, hang on, it gets better, it will lift in a few (weeks, months) I would have been helped so much more. Instead, I think he got very impatient and tired of my complaints. As far as he was concerned, this was a miracle drug with trivial and negligible (if any) side effects. And so, added to the nausea/malaise/no appetite/toad eyes was shame and fear - that I was an outlier patient, a whiner, making it all up, a psycho. "Most people tolerate the drug very well." That's what he said, over and over. Then a real miracle occurred: I found this site! And I found out that I was NOT crazy.
Anyway, blahblahblah. I just wanted you (and everyone else) to know that every mosaic tile of opinion, experience, and knowledge that you offer here is so incredibly helpful and useful to others struggling along this path.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 24 May 2017 - 01:38 PM
Advanced Member
Posted 24 May 2017 - 04:33 PM
Yup. My second one is definitely in the know.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 24 May 2017 - 05:04 PM
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