8 replies to this topic

[Gratefulwife]

Anyone on Sprycel experience being out of breath without a pleural effusion or PAH?

My husband (73) is in xlnt shape and, after 15 months on 70 mg sprycel (undetectable), has now started getting out of breath with exertion.  It goes away with continued exercise.

Pulmonologist and cardiologist have ruled out PE or PAH.  Stated Echocardiogram is conclusive that no PAH.  He also aced exercise stress test and has no problems with 45 minutes on elyptical.  

 

Specific Questions:

1)  anyone experience this being out of breath at onset of exercise and did it go away with lower dosage of sprycel?  He is talking to oncologist about lowering dose or perhaps changing to Gleevec.

2)  Pulmonologist suspects "exercise induced asthma."  Others have this?

2) Anyone with PAH:  what dosage were you on at diagnosis?  This side effect scares me so much -- trying to figure out if at lower dose the chances of getting PAH are significantly reduced.

 

Many thanks.

[scuba]

As your husband is "undetectable", he can certainly reduce his sprycel dose. Risk of P.E. or PAH on low dose sprycel are greatly reduced.

I take  20mg Sprycel and it has kept me below 0.01% - and "undetectable" at last PCR test. Your husband should consider dropping his dose to 20mg and then have his PCR tested in six weeks to verify continued PCRU status.

[Gratefulwife]

Scuba, i have seen many of your posts and so appreciative.  Can you tell me if you know of empirical evidence that incidence of PAH and PE's are reduced with lowered dose?  we have only heard it anecdotally. 

thanks so much.  since he has no other side effects i hate to see him try another TKI.  He was on Tasigna for 4 years (undetectable entire time) before a failed TFR.  he's hoping to try TFR again after 2 years undetectable on sprycel.

 

and interested to hear from others about experience with being out of breath at onset of exertion.

[Jan0080]

Grateful - My shortness of breath had my wife super concerned.  I would say that I am at least 90% better now that I am at 20 mg Sprycel.  I see my Pulmonologist in 2 weeks - there should be a big improvement in my Pulmonary Function Test.  My Hematologist next sees me in the middle of Sept.  I am hoping that my PCR is down a little bit more.

[scuba]

Scuba, i have seen many of your posts and so appreciative.  Can you tell me if you know of empirical evidence that incidence of PAH and PE's are reduced with lowered dose?  we have only heard it anecdotally. 

thanks so much.  since he has no other side effects i hate to see him try another TKI.  He was on Tasigna for 4 years (undetectable entire time) before a failed TFR.  he's hoping to try TFR again after 2 years undetectable on sprycel.

 

and interested to hear from others about experience with being out of breath at onset of exertion.

 

http://www.sciencedi...152265016305687

 

The lead author is my oncologist who prescribes my current 20mg dose.

Do a search on the article for "dose" and you will see where they describe effectiveness of dose reduction on managing P.E.

Key phrase is that for patients who already have great response - deeper dose reduction is justified.

[Trey]

Minor pleural effusion cannot be detected by xrays, so he could actually have some PE.  It does not take much to interfere with breathing.

[winespritzer]

I have shortness of breath when talking and doing aerobics. I am on 100mg Sprycel 3.6 yes. I thought I was out of shape but PE showed up on routine xray. At .000 for1.6 yrs and doubt onc will lower dose. He will tell me I am fine. I worry about the PE. I feel like switching to onc at Sloan Kettering.

[Trey]

You should take a drug break and then restart Sprycel at lower dosage.

[winespritzer]

Dear Trey
No germ bucket for me. You are a godsend. My husband and I thank you.