13 replies to this topic

[Cathy]

Morning,

 

Well I was Dx May 2010. and its been up and down number wise for me. Just hit MMR in the past 9 months I go in and out of it. Now first time I have a PE and a collapsed lung. After 6 years on Sprycel I get one now. Crazy. I'm on 70 mg and have been for 1 year or more. Lately I was trying to get him to reduce it but my numbers tend to go up when I do. Now I have this water and lung issue. Really can't breathe very good but they are having me do a stress test and heart ekco before they address the lung. so its been a long time I can't breathe! LOL hoping they just drain this thing so I can breathe!

 

I know I need to do my history in my signature I will.

 

take care everyone

 

Started on Gleevec for year stop working so  go to Tasinga got pancreatis immediately

started sprycel 100 mg for like 3-4 yrs, tried 50 mg numbers went up,  now 70 mg for past year

Surprised to get a PE at this point 7 years in.

 

 

[kat73]

This must be quite distressing for you!  Soon they will have all the info they need to get you put right.  I have a hunch that the pleural effusion threat is greater than the researchers have thought; also that it can show up later, much later.  One other hunch is that we may be walking around with small amounts of pleural effusion for a tremendously long time before they get big enough to be symptomatic, and this is possibly going to show up as more damage than they thought.  The stress test and echo are to look for pulmonary hypertension and other stuff.  I'm in the same boat.  I had an echo done but I've been too scared to look at the results. I have a face-to-face set up with the cardiologist in a couple of weeks, though. 

 

In the meantime, when I recently had a pleural effusion, I got a really swift response from stopping the Sprycel, so you can look forward to feeling tons better and breathing better soon.  They can also give you prednisone and furosemide (Lasix) to help.  And if you can't stay on Sprycel, there's still Bosulif to consider.  Please let us know how you do - I'll be thinking of you.

[Cathy]

Kat73

 

Hi, Yes I'm with you I've been thinking I was short of breathe for a pretty long time. And I don't think they know everything yet either. I really don't think I have heart issues and hope I'm right. Went to my onc yesterday he wasn't happy I hadn't called him yet to tell him. But my MD sent me to this Pulmonary dr. Who is slow at least I am off Sprycel as of today. He was saying I could go back on Gleevec but I told him no I'd like to just lower my sprycel . Gleevec stopped working for me and I don't want to feel like that again. So time will tell.

 

I should have answers soon and looking very forward to breathing again and feeling better. How long did it take your PE to go away? I'm praying for a couples weeks off at least! I wish you good look on your up coming news from the cardiologist. Sure takes a long time to get apts with them. LOL Let me know what you find out. Trying to work has been a challenge!

 

Sending good wishes to everyone!

[kat73]

Cathy - I noticed big improvement within days of stopping the Sprycel.  In two weeks I went back for another chest x-ray and it showed that the pleural effusion was about half gone.  A final chest x-ray a month later (6 weeks after stopping Sprycel) showed it to be only minimally present.  My PC said I didn't need to come back and that the rest of the fluid would resorb over the next several months.  I gave it a few more weeks, until my PCR showed an unacceptable rise (0.47), and then re-started Sprycel.  This would have been about 11 weeks after stopping.  Six weeks later (after re-start) I just got a PCR of 0.05, so I'm back in safety-land, although not yet back where I had been before all this started (< 0.01).

 

I went back on with a reduced dose (down from 70 to 50 mg, big deal) but I'm a little worried about another pleural effusion on that dose.  I'm starting to have trouble on the stairs again, have a heavy feeling in my legs, fatigue, weakness, some midriff and side tightness, and a dry cough mostly at night or otherwise lying down.  We'll see.  I won't let it go as long as I did before, that's for sure.  Good luck to you! 

[chriskuo]

If you have PE on Sprycel, and it is difficult to control, seriously consider switching to Bosulif.

The chance of PE is much, much smaller and my BCR/ABL has dropped much further on Bosulif than it every did on
Sprycel ( first time below MMR, now about MR4.0).

[kat73]

Thanks, Chriskuo, I may have to do that.  Although I've read a couple of case studies of dasatinib patients who switched because of pleural effusions, only to have that worsen on Bosulif. 

[mlk210]

Cathy, I agree with Kat, just by going off the medicine helped me tremendously with my PE. I felt so great those weeks off meds. I agree that my entire time on Sprycel, my short of breath would come and go on a cycle and then finally it just got so bad it had to be addressed. I often wonder if I had small PE's the entire 18 months I was on it.

 

Best wishes!

[Cathy]

Thanks for all your comments. I've been off Sprycel about 5 days no and I'm not seeing any difference in my breathing at all. My pulmonary Dr is very hard to get into he sent me for all these test then I haven't been able to get back into him. I think my collapsed lung is a bigger issue for my breathing then the PE since the report says its both sides but very small. I hope to get into Dr Wed  unless he cancels my apt again!

 

I don't' think they know everything either about PE. I'm on year 7 and just got my first one. Well that they saw I've been saying I'm short of breath for a year to two. It wasn't that bad until lately so that's why I finally went in. I don't want to change right now I'm hoping to go to 50 mg and see if that works. I hope I get to stay off the drug for a month just to see how I'd feel to be more normal! LOL

 

Take care all!

[kat73]

One of the reasons these pleural effusions go undetected is that a doctor doing the standard listening routine with the stethoscope doesn't put it low enough - super low - on the back.  They hear nothing.  Until they do.  Then they say, "Oh yes, now I hear it!"  The standard routine does not include going that low.

[hannibellemo]

kat73,

 

You can't hear a pleural effusion, what a physician can detect is the absence of breath sounds where they should normally be. How low that is is determined by how large the peural effusion is. My physician told me he was unable to hear breath sounds about mid-way down my lung. 

 

I've noticed my GP never goes very low when checking my lungs but my onc now goes all the way down to the base on both sides.

[kat73]

Pat - Yes, I know it's a blunting or "not hearing" of breath sounds really.  I just meant, the distinctive "non sound" isn't noticed sometimes unless they listen low on the back, and then they can pick up the difference.  And yes, if the pleural effusion is more extensive, the sounds would cut out higher up.  The only time an onc has listened to me with a stethoscope, he didn't go low enough and missed it.  And yes, it was there at that time.  I know now to point this out to every doc who listens.

[survenant]

If you have PE on Sprycel, and it is difficult to control, seriously consider switching to Bosulif.

The chance of PE is much, much smaller and my BCR/ABL has dropped much further on Bosulif than it every did on
Sprycel ( first time below MMR, now about MR4.0).

Very interesting! How long are you on Bosulif and what is the dose? Do you start with a  smaller dose?

[survenant]

Some links about pleural effusion

[chriskuo]

I have been on Bosulif about 2 years. I started at 500 but had to stop after a few weeks. I resumed about 6 weeks later at 200. Two months later, I moved up to 300 and have been there for the last year and a half.