4 replies to this topic

[Daisy1985]

Hi everybody

As I was saying last week, my husband Tom started on his Sprycel journey, after a suboptimal/slow response to Gleevec.

The first night, on monday,really freaked us out; he was having fever, cold chills and difficulties with breathing, so we end up at the Emergency. There everything prooved to be allright (lungs, heart, bloodcounts) and after an anti fever injection he was sent back home. The day after the hematologist called us saying that it was a normal reaction of the body against the new pill and that he has to go on taking his pills and adding a Paracetamolum if necessary.

So that was about 6 days ago, in the meantime he got considerably better, just some headaches now and then and some fatigue, dizziness, but all very bearable.

However, last night he was again feeling bad, no fever this time, but difficulties breathing and like he s going to faint, he could barely explain it. We thought that it was again the reaction of the body and he certainly didn t want to land up at the ER again. So after a short night ( he was too scared to fall asleep) he s feeling better again, just dizzy and weak.

So I am wondering, is this just part of the normal side effects or could it be a myelosuppresion or anemia, like the hematologist said it could happen? In case that his blood counts are too low, is it something you can do or just wait till the body adjust itself?

Is it possible to faint in such conditions?

Greetings

Daisy

[Trey]

Not unusual for Sprycel.  It takes a few weeks to work through the initial Sprycel side effects for many people.  But he should be monitored for pleural effusion based on the recent breathing and dizziness issues.  But he should not be discouraged by whatever happens in the first few weeks.  Most such issues go away.  I would not be concerned this.

[Daisy1985]

Trey, thank yo for your answer. The sides are already starting to subside. Regarding the breathing issues, he had a lungs X ray done few days ago and eveything was allright, the same with the blood counts.

So ''lucky'' it s only the sides so far and no serious issues

[Daisy1985]

He will definately not give up Sprycel, since we have a  lot of expectations from it in striking the CML

Daisy

[hannibellemo]

Daisy,

I had many issues on Sprycel the first 4-5 months but I stuck with it and was MMR at 8 months. I've been off for 8 weeks due to pleural effusion but hope to start back on at 50 mg/day this Friday. Good luck to you and your husband.

Just so you know I was on Sprycel for 2 1/2 years when I had the PE, it can happen at any time, so please be aware of symptoms and go over them with your onc. The majority of us on Sprycel will never have one but it doesn't hurt to be aware.

Pat