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Patient Beliefs Tied to Suboptimal Adherence to CML Medications


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#21 Gail's

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Posted 06 July 2015 - 08:36 PM

Gerry, I was freaked out when actively vomiting in the initial 6 weeks or so. Asked the onc and was told if I can keep gleevec down for an hour, most of it is absorbed. Relieved my mind. Interesting that I rarely vomit now but do have a few episodes of nausea and dry heaves per day. The worst is about 4 hours after taking gleevec. Trying now to use zofran with my dose of gleevec and it is helping.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#22 gerry

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Posted 06 July 2015 - 08:41 PM

I always had a packet of Maxalon in my handbag. Thankfully I didn't have nausea everyday, just a couple of times per week after taking the Gleevec.

Aspirin is the tablet that I can count on to make me vomit everytime.

 

You could always try ginger, I used to have a glass of ginger cordial when I took the Gleevec seemed to help.



#23 kat73

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Posted 07 July 2015 - 09:02 AM

Just a little rant here.  See, this is what ticks me off - I spent two years like this on Gleevec - random nausea, sometimes vomiting, always feeling punk, every day, all the time - and the clear implication from my ex-onc was that it was all in my head - the rest of his patients were hunky dory.  He was glad to give me bottles of stomach-lining potion, of course.  But never, ever any validation.  I was truly lost in the wilderness.  It so didn't have to be this way.  Makes me sad for my old self.  Rant done.  Thanks.


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.


#24 gerry

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Posted 07 July 2015 - 11:43 PM

Just a little rant here.  See, this is what ticks me off - I spent two years like this on Gleevec - random nausea, sometimes vomiting, always feeling punk, every day, all the time - and the clear implication from my ex-onc was that it was all in my head - the rest of his patients were hunky dory.  He was glad to give me bottles of stomach-lining potion, of course.  But never, ever any validation.  I was truly lost in the wilderness.  It so didn't have to be this way.  Makes me sad for my old self.  Rant done.  Thanks.

 

Glad he is your ex-onc.

My original Hematologist was nice, but I didn't have any confidence in him and switched to my current doc.



#25 soundoff

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Posted 11 July 2015 - 01:51 PM

roamingdoc83 you should try and fix that if you can

#26 tiredblood

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Posted 13 July 2015 - 09:07 PM

I missed four doses back in May due to going out of town and not remembering to take it with me.  It was wonderful in that I had NO joint aches or pains while not taking it.






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