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Switching to Sprycel - anyone NOT get pleural effusions (and other questions)

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#21 kat73

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Posted 09 September 2016 - 05:16 PM

Yes, the article was good, but I still wonder if you can have it without symptoms.  I see you were talking about an echocardiogram, not an EKG.  That makes sense - I wondered what an EKG could show!  I have those twice a year because I'm followed by a cardiologist for PAF.  I guess I'll talk to my PC doc when I see her in Oct.  I wouldn't want PAH sneaking up on me.


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 hannibellemo

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Posted 10 September 2016 - 07:10 AM

Kat73,

I was looking at the results of my echo last year from Mayo to see if I could find my pulmonary pressure reading. It said they couldn't get a tricuspid peak reading in order to estimate the pressure, so evidently an estimate can be made from an echo. To get a true reading I believe a right heart cath must be done.

Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#23 kat73

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Posted 10 September 2016 - 10:57 AM

Thanks, Pat.  And I would guess that they wouldn't order a right heart cath with no symptoms.  I will probably put this into the worry trash bin and turn to all the other worries that swirl around in life.


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 pammartin

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Posted 14 September 2016 - 02:22 PM

I really hope you are not getting PAH.  I had seen that as a possible side effect as well.  Synapse, did you get the Chest CT on a prophylactic basis or because there were concerning symptoms?  I am trying to figure out if there is any monitoring my husband should be doing relative to issues like PAH and pleural effusions.  Given his age, better to catch anything before it turns into something more.  This is such a "pick your poison" crap shoot.  He is not returning to Tasigna because of fear of vascular events, and now will have to worry (I'm the worrier, actually) about these pulmonary issues.  Please report back and good luck.

It is wise to familiarize and recognize the signs of PH.  Unfortunately, I knew nothing of it and although I had signs for several months it was not diagnosed for quite a while.  This does not mean that everyone who takes Sprycel or other TKI will develop PH, my specialist is very specific in saying my case is rare.  What does concern me is the local hospitals did not recognize the symptoms and treated me for many diagnosis' before I became ill enough to be sent to Pittsburgh where I was officially diagnosed. 

 

There is credible information stating one can recover somewhat from PH if it is caused by the TKI, and in my case I have gotten better.  2 years ago I could not walk up the stairs without resting and struggled picking up one of my 8 lb dogs.  Today I move up the stairs pretty quickly but at the top I am reminded my heart and lungs do not work as they used too.  I am very fortunate, lucky even.  Know your body and what is happening.  If you believe you have a problem, then keep searching till you find answers.  If one doctor does not listen to you, find another who will.  Many times if you believe you have an issue you can contact a specialist yourself.  Going through your PCP is a good route but if they are not listening, keep looking till someone does. 

 

PH, like CML can be managed with medication, being diagnosed is the first step in getting healthy.

 

Take Care,

 

Pam



#25 pammartin

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Posted 15 September 2016 - 09:00 AM

Kat73,

I was looking at the results of my echo last year from Mayo to see if I could find my pulmonary pressure reading. It said they couldn't get a tricuspid peak reading in order to estimate the pressure, so evidently an estimate can be made from an echo. To get a true reading I believe a right heart cath must be done.

You are correct. Because the pressures are internal, there are only a few tests that record potential PH.  An echo is one of them but according to Dr. Simon there is an 8-10 point variable with an echo.  This is a substantial variable when looking at results.  A right heart cath is the only way to accurately document the internal pressure for PH.  Dr. Simon does not usually order a right heart cath, unless the patient is having difficulty or he sees something he questions on the echo.  I have had 5 in the past 2 years.  I have had several echocardiograms. 

I always stress the proactive aspect.  I thought the tired and breathlessness was from the Sprycel and perhaps a bit of PE.  I took my water pills and pushed through the day.  I was wrong and could have hurt myself or others while driving.  Here goes that broken skipping record again........if you believe you have a problems, have someone pay attention to you.  Better to find out one does not than go through the mess I had. 







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