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Lung spot issues with CML or Sprycel?

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#21 kat73


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Posted 28 April 2016 - 01:11 PM

It's a funny thing with us, as to are we immunocompromised or not, or just in the beginning, or only before treatment, yadda yadda.  When I was in the hospital with my dog bite infection a couple of years ago, everyone went round and round about the issue.  Was the reason it got infected in the first place because I was immunocompromised?  Or was that a sign my immune system was working?  Was the fact that it took nearly two weeks and a debridement for it to come under control a sign that I was not tiptop, or is that just how long it takes sometimes?  In the end the Infectious Disease guys confirmed it was only ordinary dog slobber bacteria (forget the name), so it wasn't some exotic flesh-eating thing that only jet ski-ers get (shout out to Liamsdad).  Anyway, who knows.  I'm so glad you have a plan and are going to get all better.  I know a year sounds insane, but it just has to be done, one day at a time.  A long, long time ago I had a positive TB skin test - nobody knew how I picked anything up, and I had no active disease - the proactive treatment was isoniazid (ach, probably not the right spelling) one pill a day for 365 days, not one day less.  NO SKIPPING WHATSOEVER ALLOWED NOT EVEN ONCE I was warned.  They have county social workers who visit poor people or addicts and watch them take the pill every day.  They trusted me, however.  Anyway, the thought of never once forgetting in a whole year seemed impossible to me.  But how I did it was just by focusing on each day - yes, I will now take today's pill, ok done.  One down.  You can do it!  I never had any side effects from it - I hope you don't either with fluconazole. 

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.

#22 garfonzo


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Posted 29 April 2016 - 03:41 PM

The team has settled on starting off with reducing the Sprycel from 100 to 40 and adjust from there. Monthly PCR and ekg tests. Starting Fluconazol Saturday. Will cut my 100 Sprycel in half till I get my 40s next week.
This will be interesting and a good case study on the coadministration of Fluconazol and Sprycel.
1/22/2013 initial dx WBC 550k
1/28/2013 begin Tasigna 600

pcr test %IS Drug Dose
7/24/13 2.889 Tasigna 600
10/23/13 2.442 Tasigna 600
1/24/14 2.497 Tasigna 600
3/5/14 2.158 Tasigna 600
6/4/14 1.319 Tasigna 800
9/3/14 0.982 Tasigna 800
12/8/14 0.845 Tasigna 800
3/16/15 1.984 Tasigna 800
4/27/15 0.802 Sprycel 100 PM
6/22/15 0.277 Sprycel 100
8/24/15 0.466 Sprycel 100 AM
9/14/15 0.365 Sprycel 100 PM
11/9/15 0.307 Sprycel 100
1/6/16 0.1 Sprycel 100 - MMR mayo clinic
4/4/16 0.1 Sprycel 100 - MMR
5/9/16 0.1 Sprycel 100 - MMR
6/6/16 0.06 Sprycel 40 - MMR
7/6/16 0.1 Sprycel 40 - MMR
9/12/16 0.09 Sprycel 40 - MMR
11/15/16 0.1 Sprycel 40 - MMR
2/14/17 0.07 Sprycel 40 - MMR
5/16/17 0.06 Sprycel 40 - MMR
9/11/17 0.05 Sprycel 40 - MMR
1/15/18 0.05 Sprycel 40 - MMR

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