29 replies to this topic

[hannibellemo]

Hi, everyone,

 

It seems to me that over the almost 8 years I've been posting on here and since Sprycel has become a TKI used by many more of us, I've read posts from some of us complaining of shortness of breath with no known cause.

 

About 2.5 years in I developed a small pleural effusion. It was so small, just a blunting of the tip of my right lung, that I didn't stop Sprycel. A couple of weeks later that was shown to be a mistake. The effusion had become much larger. Sprycel was withheld and we tried diuretics with no affect and then steroids which did seem to help. I appeared to have pleurisy at the same time as it was very painful. After a thoracentesis and almost 2.5 months it resolved and I have been on 50 mg. of Sprycel in the 5 years since. A couple of times I'd felt shortness of breath but it never developed into anything. 

 

Last March I developed a shortness of breath that resolved when I stopped Sprycel for a couple of days. Late August it developed again just before I went on vacation. I had a precautionary x-ray which was clear. I decided to stop Sprycel again for 3 days and again experienced temporary relief, but only for about 10 days. I've had 3 totally normal echos and I will be going for a 4th mid October, focusing on getting a estimate of pulmonary arterial pressure. Fortunately, my symptoms don't seem to warrant a more invasive test. If nothing shows up then I will look at cardio and pulmonary function.

 

It isn't like I'm gasping for breath, just enough to be worrisome and, of course, constantly focusing on my breathing doesn't improve things. 

 

I could switch to Tasigna, but I really don't want to, I'd prefer to reduce my dosage and see if that helps while keeping my PCR at MMR or below. I'm currently bouncing in and out of negative. I have 3 months of Sprycel built up to help with costs when I switch to Medicare and it would really piss me off not to be able to use them!

 

I would like to hear of other's experiences with dyspnea and other thoughts about how you would approach this. 

 

Hope every one is well and emotionally healthy with this damn disease. While I can't say the treatment is worse than the disease I can say with certainty that for some of us it isn't a walk in the park!!

 

P.S. Forgot to add, my O₂ sat this past Wednesday was 98.

[snowbear]

I take Gleevec, not Sprycel, but I've been having shortness of breath for several months now.  I've been having other problems with Gleevec (eyes) and stopped the med last weekend and am seeing improvement with both my eyes and the SOB.  I've had a lot of testing done and the only thing showing up is a mildly elevated pulmonary pressure on echo.  I'm having a right heart cath in two weeks.   I'm restarting the Gleevec tonight because I know I can't stay off of it as I am still detectable with a 1.4% BCR-ABL, but I am so sure that these issues are side effects that I'm asking my Oncologist to switch me to Bosulif at my next appointment.  She's been talking about it for awhile now because of slow response and she doesn't want to use Sprycel or Tasigna because of potential heart & lung issues.  I don't know if I will feel better or worse on another medication, but this one has become unbearable and it does me no good  if I can't take it consistently every day like I'm supposed. to.

 

Good luck with your testing and I hope things get sorted out for you to keep your CML under control and relieve the shortness of breath.  It is a terrible feeling when you can't breath doing the most mundane things.

 

[hannibellemo]

Interesting, I searched for this on our site and found several members complaining of shortness of breath, so hopefully, it has resolved for them.

 

Thanks for your response, snowbear, I certainly hope you get some resolution shortly, too, and that you aren't dealing with PAH.

 

I'm so glad we have the support and collective wisdom of everyone on this board!

 

Good luck.

[Buzzm1]

Pat, hoping your shortness of breath issue resolves itself.  Dropping down to Sprycel 25mg for a period of time may help.

[hannibellemo]

Buzzm1,

 

Thanks, that's what I did beginning Monday. I didn't want to stop completely until my echo on the 14th so I'm just cutting pills in half. It appears to be helping. 

[Billie Murawski]

Hi Pat,

  I don't know if you got the new literature on the 5 to 7 year study on Sprycel, I just got mine Monday and ironically I had my yearly appt. with my Cardiologist on Tues. for my vascular checkup, boy first time ever my appts were in sync. He was notified of the study also, and me, always calm ,made him a copy of every page I got. You know just in case he forgot something. He knew what to look for I'm glad he did because I didn't. I had an ekg,echo,aortic, lung, and anything else that could be affected by Sprycel. Lungs clear I had a chest x-ray and stress test next week (like I need a test to tell me I have stress) but that's for my 100% blockage in my carotid artery which has nothing to do with cml, that's a hereditary problem I've had for years. All my tests were 100% okay. I also had a chest x-ray it was fine. Sometimes I can barely walk to the car or mailbox I get so short of breath just doing anything. Taking a shower wears me out.

My doc says this is all normal according to the 5-7 year study on sprycel. Can't wait till the stress test next week, all I do is sit in a chair and tap my feet that raised my heartrate to a certain level then I get a shot of adrenolin I guess because that sucker gos up in no time and I'm done. He still says the shortness of breath is normal and just pace myself

I do have one word of caution,I was in several different positions while my doc was checking my chest and lungs with the ultra sound machine, at one point I had to lay on my right side and lean to the left towards my doc I had spandex pants on. Very slipery I almost fell on my doc and his ultrasound machine 3 times. Next time Jeans.       Love Billie.

[Billie Murawski]

Interesting, I searched for this on our site and found several members complaining of shortness of breath, so hopefully, it has resolved for them.

 

Thanks for your response, snowbear, I certainly hope you get some resolution shortly, too, and that you aren't dealing with PAH.

 

I'm so glad we have the support and collective wisdom of everyone on this board!

 

Good luck.

 

Hi, everyone,

 

It seems to me that over the almost 8 years I've been posting on here and since Sprycel has become a TKI used by many more of us, I've read posts from some of us complaining of shortness of breath with no known cause.

 

About 2.5 years in I developed a small pleural effusion. It was so small, just a blunting of the tip of my right lung, that I didn't stop Sprycel. A couple of weeks later that was shown to be a mistake. The effusion had become much larger. Sprycel was withheld and we tried diuretics with no affect and then steroids which did seem to help. I appeared to have pleurisy at the same time as it was very painful. After a thoracentesis and almost 2.5 months it resolved and I have been on 50 mg. of Sprycel in the 5 years since. A couple of times I'd felt shortness of breath but it never developed into anything. 

 

Last March I developed a shortness of breath that resolved when I stopped Sprycel for a couple of days. Late August it developed again just before I went on vacation. I had a precautionary x-ray which was clear. I decided to stop Sprycel again for 3 days and again experienced temporary relief, but only for about 10 days. I've had 3 totally normal echos and I will be going for a 4th mid October, focusing on getting a estimate of pulmonary arterial pressure. Fortunately, my symptoms don't seem to warrant a more invasive test. If nothing shows up then I will look at cardio and pulmonary function.

 

It isn't like I'm gasping for breath, just enough to be worrisome and, of course, constantly focusing on my breathing doesn't improve things. 

 

I could switch to Tasigna, but I really don't want to, I'd prefer to reduce my dosage and see if that helps while keeping my PCR at MMR or below. I'm currently bouncing in and out of negative. I have 3 months of Sprycel built up to help with costs when I switch to Medicare and it would really piss me off not to be able to use them!

 

I would like to hear of other's experiences with dyspnea and other thoughts about how you would approach this. 

 

Hope every one is well and emotionally healthy with this damn disease. While I can't say the treatment is worse than the disease I can say with certainty that for some of us it isn't a walk in the park!!

 

P.S. Forgot to add, my O₂ sat this past Wednesday was 98.

Hi Pat, I take water pills, and if I feel fluid buildup in my lungs I stop Sprycel for about 3 0r 4 days,but onc insists on taking water pill.

I've gotten to the point when I know to take a Sp break. But my bcr-abl has been 0% for 6 years. So you have to check with your doc.

[Cathy]

Billie,

 

So did you just get the 5-7 year study for Sprycel in the mail? I would be so interested in seeing (reading) that and giving that to my dr. I'm am so short of breathe and know I shouldn't be that is has to be Sprycel and would love to see what they say about it. I'm very close if not at 5 years. Interesting I want to reduce my dose but my numbers bounce around and go up all the time so he's not keen on it yet!

 

thanks

Cathy

[Billie Murawski]

Billie,

 

So did you just get the 5-7 year study for Sprycel in the mail? I would be so interested in seeing (reading) that and giving that to my dr. I'm am so short of breathe and know I shouldn't be that is has to be Sprycel and would love to see what they say about it. I'm very close if not at 5 years. Interesting I want to reduce my dose but my numbers bounce around and go up all the time so he's not keen on it yet!

 

thanks

Cathy

   Hi Cathy, I just got the report monday, I was dx aug 2007 on Gleevac after 3 years bcr 0% Started Sprycel 100mg worked my way down to 20mg a day bcr still 0%. I'm still short of breath after 6 years. But I have had cml 9 years and luckily it was caught early. I was never given any info about cml until I found this site 3 years later.

[Billie Murawski]

Billie,

 

So did you just get the 5-7 year study for Sprycel in the mail? I would be so interested in seeing (reading) that and giving that to my dr. I'm am so short of breathe and know I shouldn't be that is has to be Sprycel and would love to see what they say about it. I'm very close if not at 5 years. Interesting I want to reduce my dose but my numbers bounce around and go up all the time so he's not keen on it yet!

 

thanks

Cathy

Cathy, I made copies and gave them to my cardiologist. I'm going to make more copies and give them to all my docs.I even circled anything that pertained to me. Sometimes we have to be our own advocates!

[hannibellemo]

Billie,

 

It is so wonderful to hear from you! Could you be more specific on the title of the article so we can look for it on-line?

 

Thanks for your support and sense of humor, it has gotten many of us through trying times in the past; I hope we'll be hearing from you more often now!

[hannibellemo]

I don't know for sure that this is what Billie was talking about, but this was published this year and it is the final report on the 5 year DASISION study.

 

http://jco.ascopubs....15.64.8899.full

[Billie Murawski]

I don't know for sure that this is what Billie was talking about, but this was published this year and it is the final report on the 5 year DASISION study.

 

http://jco.ascopubs....15.64.8899.full

Pat, No that isn't what I got, it looks just like that big paper that comes with our scripts sometimes. Maybe everyone will get a copy with their next script. For those that asked I was not in any study and I have no idea why everyone didn't get it.

I bet our pharmacists have a copy of it. But I got a $10,000 pill holder Yipee!!!

[hannibellemo]

Well, I could use a new pill holder and as you pointed out, God knows, we've earned it!

[DebDoodah22]

They should send us all computerized medi minders...alarms for better adherence.

[Trey]

New Sprycel dosing instructions:

 

http://packageinsert.../pi_sprycel.pdf

[hannibellemo]

Damn! I have to admit I wondered about that, because Sprycel is supposed to be absorbed in the small intestine. I wondered if cutting it would allow it to be absorbed in the stomach. Any insight, Trey?

[Billie Murawski]

New Sprycel dosing instructions:

 

http://packageinsert.../pi_sprycel.pdf

Thanks Trey, That's what I got in the mail!!

[Cathy]

Thanks Billie!

[Trey]

I wondered about that, because Sprycel is supposed to be absorbed in the small intestine. I wondered if cutting it would allow it to be absorbed in the stomach.

 

Sprycel is 90% absorbed from the stomach (as are all CML TKI drugs), not mostly from the small intestine.  So it does not matter either way if you cut it.