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#1 monmon

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Posted 30 January 2018 - 12:07 AM

Hi All,

 

I am not sure what is going on with the new forum. Will this discussion board go away soon? 

 

I am really confused about my test results and the use of different labs. I really thought I would be PCRU this time and am really disappointed that I am not. Still on 400 mg of Gleevec. 

 

I have brain fog really bad and am thinking that I MAY be going into a depression. Is this common with CML and Gleevec? I hope that I don't have to try to figure out how to get around a new forum. 

 

Thank you all for the feedback and the information that you share.


Diagnosed March 2017

WBC 94,000

Started Gleevec  April 2017

March 2017  - BCR-ABL1 p210    59.64 detected

June 2017 -    BCR-ABL1 p210    11.65 detected

July 2017 -      BCR-ABL1 p210      1.999 detected

Sept 2017 -     BCR-ABL1 p210        .5690 detected

changed labs for November test. I don't know why

 

Nov 2016          B3A2                 .094 detected

 

back to original lab Jan 2018

 

Jan 2018      BCR-ABL1 p210          .5595 detected


#2 Red Cross Kirk

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Posted 30 January 2018 - 12:33 AM

Yes, they tell us we only have a couple more days here. :(

One of your PCR results doesn't fit the trend line.  I think that result may be suspect.

Your PCR history is pretty close to what mine was during the first year.

I'm still alive, if that's any consolation. ;)


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%


#3 monmon

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Posted 30 January 2018 - 03:42 AM

:lol: Happy you are still alive Kirk


Diagnosed March 2017

WBC 94,000

Started Gleevec  April 2017

March 2017  - BCR-ABL1 p210    59.64 detected

June 2017 -    BCR-ABL1 p210    11.65 detected

July 2017 -      BCR-ABL1 p210      1.999 detected

Sept 2017 -     BCR-ABL1 p210        .5690 detected

changed labs for November test. I don't know why

 

Nov 2016          B3A2                 .094 detected

 

back to original lab Jan 2018

 

Jan 2018      BCR-ABL1 p210          .5595 detected


#4 kat73

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Posted 30 January 2018 - 12:43 PM

monmon - Yes!  Gleevec can cause depression.  Sometimes not even listed among side effects, it sometimes turns up but very low, like 1-2% of Gleevec patients.  But it's real, because it sure happened to me.  Depression, anxiety, and malaise marked my two initial years on Gleevec, along with horrendous periorbital edema. 

 

It looks like you are a good responder and you may make MMR at 12 months, which is good.  Keep an eye on your creatinine level, btw.  If it goes up, you might want to switch to Sprycel.  When I switched to Sprycel at two years, because of just too much misery, the difference FOR ME was night and day.  My CML number zoomed down, the toad eyes got tons better, I no longer felt sick all the time and that helped me get on top of the depression.  A lesser bit of eye edema and depression (and fatigue) stay with me, as does the seemingly permanent change in my creatinine level, but oh my goodness is life ever so much better than on Gleevec.  However, you will find in our group PLENTY of people who have the OPPOSITE sentiments! 

 

Except, of course, you won't be finding us here after tomorrow.  I guess I will head over to the LLS Community place.  Or disappear back into the Land of No Help from whence I emerged all those years ago.


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.





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