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Pulmonary Arterial Hypertension- PAH

FDA notified healthcare professionals that Sprycel (dasatinib) may increase the risk of a rare but serious condition in which there is abnormally high blood pressure in the arteries of the lungs (pulmonary arterial hypertension [PAH]). Symptoms of PAH may include shortness of breath, fatigue, and swelling of the body (such as the ankles and legs). In reported cases, patients developed PAH after starting Sprycel, including after more than one year of treatment. Information about this risk has been added to the Warnings and Precautions section of the Sprycel drug label.

Sandy

I was diagnosed with CML in June 2011.  For several months before I was experiencing breathlessness on exertion and this continues somewhat worsened. . I am on the Spirit II trial taking 100mg dasatinib. Haematologist and GP have referred me to cardiologist but I cannot get an NHS appointment before end June.  Hence I'm seeking support and information myself.  Can anyone tell me if there is a causative relationship between CML and pulmonary hypertension (if this is what I shouod be calling breathlessness).  Is there likely to be a deterioration with dasatinib?  What tests or other treatment might be available or recommended?  And of course what is the prognosis?

I am not sure about CML 'causing' PAH. I don't think so because if it was a causal factor then I think this condition (PAH) would be much more common in the CML population.

I think you breathlesness before diagnosis would certainly have been due to low HGB counts. Have you any info on what your HGB was and is now (after therapy?) With TKIs haemaglobin levels tend to stay on the low side and low levels can give rise to symptoms of anaemia... i.e breathlessness on exhertion, palour, tiredness and general feelings of weekness.

If you fear your symptoms before diagnosis were to do with pulmonary hypertension and not anaemia/low Hgb levels (normal level for males is around >13-16) then you might want to see a cardiologist more urgently because you are being treated with dasatinib. You  need to check that your doctor knows that the FDA has put a warning on dasatinib for people who already have this problem. It is a rare occurance but you need to have it checked out.

I hope this is helpful.

Sandy

Sandy

Thanks for the speedy response. I may have used the term PAH wrongly so I've switched to what I experience as the title. I have no medical training except first aid but as retired chemical engineer I like to try to understand the 'processes'! My passions include mountain walking and skiing when I can so I'm very sensitive to loss of oxygen transfer.  It is definitely getting worse. I can just manage the small inclines of southern Engalnd and Yorkshire.

I was diagnosed in June last year after an  acute attack of giddiness, nausea and sweating, and also onset of deafness in Snowdonia.  I had experienced breathlessness on exertion for some months before.  Blood samples having been taken by ENT, I was called in by Haematology and after sampling bone marrow the consultant gave my the CML diagnosis.  HGB was then 9 and white cells 200.  Breathlessness was attributed to anaemia and  blood viscosity.  Being put onto dasatinib as part of the Sprit II trial the HGB rose to 11.3 over 3 months where it remained at my last clinic in February.  White cells had dropped to 10 and BCR-ABL right down.  The consultant in February thought the breathlessness could not now be attributed to anaemia, was aware of a possible dasatinib association and wrote to my GP to suggest a consultation with cardiologist.  I have another appointment with GP tomorrow and will try to get cardiologist brought forward.  There might some confusion with fact that I saw cardiologist in 2010 and had echocardiogram becasue of palpitations and ecktopic heart beats (given fairly clean bill of health then).  NHS reorganisation/cuts might also be a factor.

Its good to know there is this support forum as the subject is not one for discussion in the pub.