Feb 21 2018 prior to any medicine.
BCR/ABL1 (IS) was 100.00 Original Test.
May 30th 2018- after medicine ( 1 month of 100mg) then reduced to 80 MG because of bad side effects etc.
BCR/ABL1 IS) .161
Presently on 80 MG daily, but I have an appointment with my Oncologist this Wednesday.
I am going to try to get the dosage reduced to at least 50 MG daily.
Hopefully, she will agree!
Chuck.
Chuck
that is an excellent result. You must be so pleased. Best of luck with getting a reduction to 50mg. It has made such a difference for my husband especially regarding fatigue and swelling round the eyes. What persuaded his oncologist to reduce was the peer research we took to the appointment so I would recommend taking along some of the articles posted by members showing the effectiveness of a starting dose 50 mg of Sprycel
Best wishes Louise
Best of luck Chuck. I hope she will agree. Going from 100 to 50 has been life changing for Paul. He feels a fog was lifted and he has much more energy.
We felt that with Sprycel side effects were building over time, so the less time he needed to be on 100 the better, given he needs to be on this drug for a long time, perhaps forever.
We figured if 50 didn’t work at least it was worth a try and he could always increase the dose again if need be, without much risk.
Hope your appointment goes well today. Do you have someone to go with you to provide moral support as you argue your case?
Let us know what she says.
Louise
Ok latest update from this Wed.- going to give it one more week - changed time of taking med from night to just after breakfast.
I have to get to complete remission in one year ( From Feb 2018 to Feb 2019). My BCR-ABL IS was .161- so she is reluctant to lower the sprycel from 80 to 50 at this time only because if I go to 50 and do not reach remission, we must consider switching meds like going to Gleevec which I am not willing to do right now. So I think I am going to stay at 80 mg for at least the new few months- if I reach total remission during this time, then I will go to 50.
I just had a Echo kardiogram done with my Cardilogist and waiting for the results next week- also scheduled for a Ct with contrast this coming Wed- had a normal chest xray done and there is something going on on my left lung- might be water build up- anyway- has to get checked out for PE I guess.
I got the results from the FISH test back- it's NEGATIVE: showed a normal pattern of hybridization in the interphase cells examined.
Original FISH test was 79%. back in FEB prior to any meds.
Best of health to all!
Chuck.
Just got back from my oncologist.
CT with contrast done this morning is showing slight water in left and right lung, but not enough to need to extract with needle or to prescribe a diuretic.
Oxygenation is at 99%.
Numbers from latest blood work are low enough that she is immediately lowering dosage from 80 MG to 50MG daily! (YES!!!)
Chuck.
Find out about the echo cardiogram results tomorrow afternoon.
That's great news on the reduction. But be advised, diuretics usually don't make a dent in a pleural effusion and corticosteroid treatment can help a little, but a complete drug stoppage has to accompany them or the pleural effusion will not go away. At 50 mg, let's hope yours doesn't continue to grow, but just know that that's not usually what happens, once you are discovered to be prone to pleural effusions. I'm down to 25 mg and I still continue to have the smallest - but still discernible on the lateral view x-ray - pleural effusion. It's stable, but it isn't going away, either.
