15 replies to this topic

[SUE]

Hi All,

 

About 3 weeks ago I was walking more quickly than usual, and I started experiencing shortness of breath and a cough.  About 2 weeks ago I started to worry about PE or PAH, so I stopped taking Sprycel (40mg daily).  A chest x-ray indicated no PE.  A few days ago I had an echocardiogram, and the pulmonologist reported

 

"Mildly abnormal.  Heart muscle is somewhat stiff(diastolic dysfunction).  Moderate valvular disease(mitral).  Mild elevation in pulmonary artery pressures:mild pulmonary hypertension  On the elevated pulmonary pressures may be associated with dasatinib(<5% of patients).  All relatively mild findings, but you may benefit from seeing a cardiologist"

 

The pulmonologist prescribed an inhaler to be used as needed.   I haven't used it much.  The shortness of breath is much better(though I haven't been walking very quickly)

 

I've been planning to cut down my Sprycel dose to alternating days of 40 and 20, and then to 20mg daily.  My onc was not happy with  my cutting down to 40mg daily, and when I mentioned my further plans she responded, "You're doing this on your own."   When I emailed her on Friday afternoon to tell her of the Echo results and ask her opinion on continuing with Sprycel, her assistant replied that she needed to review the dasatinib data and would let me know.  

 

I haven't heard back from the onc yet.  I would like to continue with my plan to gradually cut back the Sprycel dosage.  I would feel much more comfortable doing that, but I'm concerned that if I do have PAH, I could be harming myself by continuing. The pulmonologist recommended discussing the situation with my onc, though he said

 

  "The pulmonary hypertension is relatively mild and if your hematologist would like to continue it, we could repeat an echo in 6 months. The 'break' you refer to will probably not make much of a difference pulmonary hypertension usually results from slow and chronic changes to blood vessels and to the right sided chambers of the heart. "

 

 I'm confused about what do because I've read that a diagnosis of PAH requires stopping Sprycel immediately, but I'm not sure what "relatively mild" means.  I've also read that an echo result is not conclusive evidence.  

 

As always, thanks to all for your advice.  I've learned so much from our board.  I don't know where I would have been without it.

 

Sue

 

[scuba]

Sue,

 

You are PCRU having responded very well to Sprycel. You dropped your dose to 40mg in March. I assume you are still PCRU.

At this point, your heart issues are more important than CML in terms of what to focus on. Dropping to 20mg Sprycel makes very good sense. You could even stop altogether and verify if symptoms of P.E. go away (assuming it is, in fact, caused by Sprycel). Stopping Sprycel would require that you have a PCR blood test once per month to track if CML becomes detectable. There is a chance that it may not. You may be able to continue off Sprycel and still remain PCRU. This assumes your Oncologist is familiar with the STOP trials.

 

Given your heart issue, stopping Sprycel or at a minimum reducing dose to 20mg. is wise. Your Oncologist should know this. Many experienced CML doctors know to stop Sprycel when heart issues crop up - especially when a patient is PCRU. You would even be a candidate to stop Sprycel even without heart issues as a normal test for treatment free remission since you have been PCRU for two years (next month). You're in a great place to try. And yes, go visit a cardiologist.

[SUE]

Hi Scuba,

 

Thanks for your response.  I am still PCRU, but I'm really hesitant about stopping Sprycel completely.  I do have a cardiologist appointment scheduled for early November.  Do you know if people generally stop Sprycel if PAH is suspected, but not confirmed?

 

 I'm pretty sure my Onc is not familiar with the STOP trials.  

[scuba]

I do not know if people are told to stop Sprycel if PAH is 'suspected' rather than confirmed. In your case, your pulmonologist suggests your symptoms and test results are mild. In my mind that gives you time to find out by visiting a cardiologist sooner rather than later if you have PAH. I detect an apprehension about stopping therapy until you know for sure. That is quite understandable. So I think you have answered your own question and you would rather keep taking Sprycel until a doctor tells you to stop (cardiologist / Oncologist) based on a definitive PAH diagnosis brought on by the drug.

 

It is important that your shortness of breath be investigated regardless. 

[Trey]

Sue,

You should discuss the mitrial valve issue in more detail with a cardiologist, since that is likely the source of your issues.  And taking Sprycel on top of that can only make the PAH issue and breathing worse.  A leaky mitrial valve causes blood to flow backwards toward the lungs and cause PAH and trouble breathing, even without Sprycel.  The issue gets worse over time.  Mitral valves can be repaired or replaced if necessary, depending on what the exact problem is.

http://www.heart.org...sp#.WA6GKrXstko

 

If it were me, I would reduce the dosage and see if the breathing issues get better.  I would try 20mg daily and report the results to the cardiologist since your appointment is near.  Sometimes the Onc is not the best source of information for managing side effects, especially if they are unrelated to their specialty (such as cardiology).

[SUE]

Thanks Scuba and Trey for your thoughtful and helpful responses.  Trey, thank you for pointing out the mitral valve issue.  I knew nothing about that and would not have thought to ask the cardiologist about it. 

 

 I've been very nervous about being off Sprycel completely for almost 2 weeks.  I will go back on 20mg, at least until I see the cardiologist.

 

Thanks again to both of you for your continued willingness to help all of us struggling with this disease.

 

Sue

[SUE]

For the first time in more than 2 years I'm not PCRU.  I've been on 20mg Sprycel since November.  The test a couple weeks ago showed b2a2 transcript 0.020 %. A recent echo cardiogram showed no PAH, and improvement in mitral valve issues. I really don't want to go back to 40mg. Is there any chance that my stopping for 2 weeks in October caused this change, even though my December test was fine? Could it just be a blip? I would like to think so, but it seems kind of strange that this blip would occur when I reduced to 20.

 

I have an appointment with my Onc on Thursday, and I think she will probably push for me to go back to 40mg. She's been reluctant to agree each time I've reduced my dose, though less so when the PAH turned up.

 

Trying not to panic, but not sure what would be the best thing to do.

 

Sue

[Buzzm1]

Sue, I would continue with 20mg and await confirmation.  We've come to know that any single PCR reading requires confirmation.   Given that 40mg may have triggered mild PAH, you have reason enough to stay at 20mg.  There shouldn't be any risk of CML getting out of hand.

[SUE]

Thanks, Buzz.   I would really like to continue at 20mg.  Do you think I should try to get another test before the usual 3 month period?

[Buzzm1]

Thanks, Buzz.   I would really like to continue at 20mg.  Do you think I should try to get another test before the usual 3 month period?

I personally don't think there is much to be gained by another immediate test so I would probably wait for the next regularly scheduled PCR,  Of course that's up to you and your onc.  You want to see the 20mg work; give it another three months.   The risk of doing so should be very low.  

[SUE]

Thanks, Buzz.  I think the 3 months will be a better indicator, though I'm concerned that the onc will push really hard for either a return to 40mg Sprycel or switching to a new med.  If she keeps pushing, I might request a test at  2 or 21/2 months, to get an idea of direction.  I'm thinking that if the direction is up I might have to increase the dose, maybe alternating between 20mg and 40mg.

 

Sue

[Buzzm1]

Sue, we'll be interested in hearing what your onc. has to say.   More oncologists are changing in the way they treat CML, especially in the area of dosage reduction, but the change is slow in coming.  Good Luck.

[SUE]

Buzz,

 

My onc actually did not react the way I thought she would.  She noted that the elevation was very slight and agreed with my wish to continue on 20mg, at least until we see what the next test shows.  She seems more open to the idea of reduced dosage.  That may be because I did have PAH detected when I was on 40mg, but I also think she's learning more about options for CML.  

 

I think I'll probably go for the next test at 2.5 months.  Keeping my fingers crossed.

 

Sue

[Buzzm1]

Sue, thanks for the update; glad your onc. is amenable to you staying on 20mg.  We'll be rooting for you.

[hannibellemo]

Sue,

 

I had an echo in October because of shortness of breath and we were looking for indications of PAH. Everything was normal except the echo indicated abnormal diastolic function (mild). This has never shown up before and I was alarmed, still am to some degree. I was told that as long as I am asymptomatic there was no need to be seen by a cardiologist as there is nothing that would be done. My onc did not make this determination himself, he consulted with the cardiologist who read my echo.

 

While this is not uncommon in 70+ year old people, I am 65. My shortness of breath comes and goes but it is not accompanied by any other symptoms. I am still taking 50 mg. Sprycel at this point.

 

Hope you continue to do well and I will be interested in your next test results.

[SUE]

Buzz, Thanks for the encouragement.

 

Pat, Thanks for the good wishes. 

 

 I'm 75, so I guess I shouldn't have been surprised by the variety of issues that popped up on my echo.  But I was.   I had periodic shortness of breath as well, though I wasn't sure if that was due to anxiety or physical problems.  If the PAH hadn't been suspected, I don't think I would have gone down to 20mg when I did.  I tend to take things slowly, so I was hoping to get some combination of meds that would enable me to take 30mg daily.  If the next test result is not good, I'll probably go back to 40mg for 6 months or so, and then hopefully try for 30.  I definitely don't want to try a different med.

 

Sue