10 replies to this topic

[KathyF]

I was diagnosed in 2003.    Took 400 mg gleevec until 2011 and then reduced to 200 mg.    This October -- after 11+ years on gleevec -- I developed pericarditis that then went to pericardial effusion.    I had heart surgery late October to drain the fluid.     I'm told by my cardiology team that the likely culprit is gleevec -- and it's been confirmed by my oncologist that gleevec as well as sprycel and tasigna have pericarditis as a side effect.     I had never heard this before from him -- and I've not read the side effect list that comes with my medication in a very long time.

 

I'm wondering if anyone else has developed pericarditis.

 

I am off gleevec now -- have been for 2 months.     I'm seeing a specialist at Dana Farber next week.   For now, I feel fine.

 

Thanks for any input.

 

all the best,

Kathy

 

[jmoorhou]

Gleevec is known for causing heart problems over the long term.  If you google heart disease and gleevec you will find a lot of information unfortunately.

[Trey]

Gleevec is NOT known for causing heart problems over the long term.  No need to cause undue concern among people without facts.  But it can produce heart side effects in a small number of patients, reportedly up to 6%. 

 

It is especially unusual that after reducing dosage to 200mg for the past several years this would happen.  Other medications can enhance the heart side effects.  Are you taking other medications regularly?

 

Here is a report which provides some facts about TKI drugs and heart side effects.

http://www.ncbi.nlm....les/PMC3222244/

[KathyF]

Trey -- I think you're addressing the other poster and not me about causing alarm.     At least I hope that's the case.    

 

My facts are that I got pericarditis and my cardiologist, cardiology surgeon and 2 oncologists all say it was caused by the gleevec.   All see no other reason -- no other medications, etc. -- and the oncologists have seen this before.     That said, it is NOT a common side effect.

 

I'm not trying to alarm anyone.     Just looking for information from anyone else who also has experienced this -- and also putting info out to everyone.      If I'd known pericarditis was a side effect, I would not have stopped gleevec -- I would not have done anything different these last 11 years -- but I would have known what was going on when the attack happened.

 

As I stated earlier, I'm not on any drug now.     I'm gathering information as I look down the road.

[Trey]

The "alarm" statement was not intended for you.  Your concern is very much legitimate. 

 

Since there are no other medications it could be the Gleevec, but on 200mg this is extremely unusual.  Pericarditis happens to people who are taking no medications at all, and the cause is most often a virus or autoimmune issue.  But in such instances the Gleevec could also make the issue worse.

http://www.mayoclini...es/con-20035562

 

Tasigna has shown to be the least likely to cause pericarditis.  You could switch to it, but your Onc may hesitate due to the QT warning. 

[KathyF]

Trey -- yes, on low dose it's more unusual.     I contacted Dr. Druker and that's what he said.     I know that in some cases, no one knows why.      That is, in otherwise healthy people there can be no known reason.     In my case, that may be the situation as well.   There was no virus and no other identifiable causes.     I will post again after I see the oncologist at Dana Farber and again after I see a cardiology oncologist also at DF.

[Widgeonus]

From the article.

"In contrast to nilotinib, pericardial effusions are observed with both imatinib and dasatinib."

However, it did say that it was observe with doses over 600mg. Guess it's still possible, but unlikely.

Good luck with the treatment.

[Trey]

Your case is very interesting, so please keep us informed as additional information becomes available.  Hope all goes well.

[KathyF]

Update after Dana Farber appointment:

 

Oncologist at DF does not think that gleevec caused the pericarditis.    Pericarditis is a side effect of gleevec in less than 1% of patients and those patients are usually older with existing heart issues.     He added that the pericarditis generally shows the first year -- not 11 years down the road.

 

That said, oncologist recommends staying off of gleevec.     Not because of pericarditis, but because (1) I've achieved such a deep remission/response from gleevec and held it all these 11+ years, and (2) because I've been on 200 mg of gleevec for 3 years which in this Dana Farber oncologist's mind is equivalent to 0 mg of gleevec.    So, in effect, his thinking is that I've been off drug for 3 years already.    He said to get a pcr test done (there or with local oncologist) every 3 months and enjoy life.   

 

So that's my plan!

 

Merry Christmas & Happy New Year!

[Trey]

That sounds right about the pericarditis.  But 200mg Gleevec is not zero, and in some people it is actually a therapeutic dosage as shown by actual experiences (Japanese Gleevec "BINGO" study).  Some people uptake the drug more efficiently than others, so therapeutic dosage is an individual thing. 

http://onlinelibrary...010.01643.x/pdf

(See second page, "Results", para 2; and Table 1 on page 3)

 

A good plan.  Enjoy.

Edited by Trey, 24 December 2014 - 10:35 AM.

[KathyF]

Trey -- I'm just reporting what the oncologist told me.    He's the Head of the Adult Leukemia Department at Dana Farber with a ton of credentials and experience.     In addition, there was one of the CML experts at DF present.      Their combined knowledge & experience tells them that 200 mg is equivalent to 0 mg.     Maybe they are incorrect -- but I'll take their opinion over the BINGO study.  That said, I have a vested interested in doing so.

 

Happy Holidays!