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Using Death with Dignity Laws to get your Onc to help you reduce.


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#1 jmoorhou

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Posted 04 July 2017 - 12:27 AM

I threatened this is an email so the Doc has a paper trail of how unhappy I was at full dose of Gleevec. 400 mg.

 

California just passed this law,  Oregon, California, Colorado, District of Columbia, and Vermont also have it.

 

My Onc would not waver and threatend  to put me on another TKI (at full dose).  I told the Onc I was beginning to feel really bad on 400 mg. Gleevec.   I asked her if I would qualify and she said I could go down to 200 mg.

 

At least now she knows I'm serious.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#2 MooshiDad

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Posted 04 July 2017 - 09:01 AM

I never realized how lucky I am until i read a lot of the posts here about Oncologists that refuse to even consider dose reductions or cessation. My Oncologist brought the cessation talk up to me and said that it was something that we would work on together in the future. We are far from being ready for that but she is anxious to keep reducing my dosage as long as my results are good.

 

Sorry to hear that you had to resort to these types of measure to get what you want and need.



#3 kat73

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Posted 04 July 2017 - 12:41 PM

jmoorhou - It sounds to me like you have suffered a long time without truly being heard by the onc.  I know the feeling!  Ultimately, I gave up on Gleevec altogether and went to Sprycel.  But before that, the occasional times he let me reduce the dose to 300 or 200 did make some difference in the myriad of side effects that bedeviled me.  When I switched to Sprycel, although I had some transient things like rashes, and I did get in trouble with pleural effusions, that overall misery that I experienced on Gleevec was gone.  This might work for you.  You don't know until you try. 

 

When I look back, I feel quite sad for the person I was then - I felt uncared for, truly.  I had plenty of support at home and among friends, but medically I was abandoned.  Worse, it was an intellectual abandonment.  I could tell I wasn't believed when I complained, so I internalized that I must be crazy and I stopped complaining.  But life - day to day life - was hell.  I hope reducing to 200 will help you, but if not, don't be afraid to try Sprycel - even at 100 mg.  If you continue to get good PCR numbers (or undetectables!) on Sprycel, you can try going down to 70 or 50.  I believe the stats show few pleural effusions at 50.

 

Bottom line:  If you are one of those people who feel awful on Gleevec, you might find that you feel pretty darned good again on Sprycel.


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.


#4 jmoorhou

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Posted 06 July 2017 - 03:09 AM

Thanks for your support Kat73 I'm thinking about Spyrcel but the Onc won't hear of it...that's alright I'm taking about 250 Gleevec and I feel a lot better.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis




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