13 replies to this topic

[hannibellemo]

I was surprised to hear from my doc that there was no effusion and no infiltrates - my lungs look fine! I expected a very small effusion, but nothing. I seem to recall that some of us have posted in the past about shortness of breath on Sprycel and I'm wondering if you will (once again) share your experience with me. I will do a search, too, but I don't always get what I'm looking for when I do that.

Anyway, thanks! I took my Sprycel again today, only 2 days off, hope it doesn't effect my PCR draw next Tuesday.

Think Spring! (for those of you already experiencing Spring - I'm jealous!)

Pat

[CallMeLucky]

After 1 mo on Sprycel at 100mg I was having a couple of problems in chest area, pain in chest, tightness like air pressure, coughing, and at times while I wouldn't call it shortness of breath I would feel like someone was standing on my chest and I couldn't take a deep breath.  I had chest x-ray and then chest CT, neither showed anything at all.  I had to lower my dosage.  At 50mg I really don't have any chest issues to speak of, at 60 it was ok but I could tell it wasn't 100% at 70mg I started to have the chest problem again so I went back to 50mg and going to monitor PCR closely.  Sprycel messes with your respiratory system beyond effusions, effusions are only one component of the respiratory side effects of Sprycel.  My doctor said that the side effects I had could lead to an effusion or never turn into one.

[hannibellemo]

Lucky,

I remember when you were having all your problems. Glad to hear that 50 mg. is taking care of it. I had been doing great on 50 mg. until recently when this hit and it is so like the way I felt when I had the small effusion that I was shocked to hear there is no evidence of fluid. Of course, because it was so small we didn't stop
Sprycel right away and it grew into a very uncomfortable effusion. I don't ever want that again.

Now I'm paying so much attention to my breathing that it's no wonder I can't breathe properly!

Guess I will just wait and see what happens. I've had so many side effects show up suddenly and disappear just as suddenly maybe this will, too. I'll mention it to my GP when I see her in early May. This sucks!

Pat

[CallMeLucky]

It does suck because as you know you could go one day and they see nothing and then go back the next and suddenly it is there.  This happened with my son too, he gets onset asthma from viral infections and it can easily turn to pneumonia.  I remember listening to him breath one time and said to my wife "take him to doctor in morning he has pneumonia".  She took him and they listened and said his chest was clear.  I got home from work, listened to him breathing again and said "take him back in the morning and have him checked again". This time the same doctor listened and said "yep, there it is, he has pneumonia".  Fortunately it cleared up right away.

This was the problem I had with my doctor's plan for me at 100mg of Sprycel "we don't see anything today so go home and come back if you have a problem".  I would call a couple of days later and say it hurts and they would say "come back in".  After 2 weeks in a row and thousands of dollars in tests, I said "I can't keep doing this waiting for the effusion to show up and I don't want to ignore it and then get myself in trouble".  That is how I wound up switching doctors and going on lower dosage.

Hopefully I won't regret it and I hope you feel better soon.  It may settle down, but you will need to keep an eye on it.  Let us know how you are doing, good luck.

[Marnie]

Hey, Pat. . .glad to hear that it is NOT a pe.

You are asking for info/problems.  Not sure if this qualifies, but lately. . .maybe for the past 4 months or so, I have a sort of tightness in my chest when I am in bed laying on my side.  A little hard to breathe, feels funny, and sounds funny in my head (that sounds weird).  I don't notice anything when I am upright or laying on my back.  Mentioned it to the doc, but he didn't hear anything when he listened to my lungs.  He said it was probably my lungs "draining" whatever that means.

Now if I could only get rid of this awful rash!!  Saw a dermatologist. . she was worthless.  I'm annoyed that she made money for the 5 minutes that she looked at my neck and proclaimed it eczema.  Actually, the visit lasted 5 minutes. . she looked at the rash for 5 seconds.  It is NOT eczema.  The cortisone cream from my PCP is doing nothing and the rash is driving me crazy.  At least my appt with a rheumatologist turned out to be good news. . .my blood test that showed positive for rheumatoid arthritis turned out to be a false positive.  I've been in a blue funk since I tested positive for RA factor.  Sheesh.  Lately, life just sucks.

Sorry. . didn't meant to go on.  Just glad that your pe was not a pe, and hope that you find out what's going on. 

Hopefully spring will hit Denver.  I had to scrape 6 inches of snow off of my car this morning!  However, the sun at this altitude is intense, so by the drive home from work, the roads are melted out.  It's supposed to be in the 70s by this weekend. . .maybe I can even take the motorcycle to work tomorrow.

All the best.

Marnie

[ChrisC]

Hi Pat,

"Oh bother, said Pooh."

I'm sure he could have been referring to your ongoing bother with breathing, worrying, etc., all of which are fully justified, in my opinion.

What to do, that you aren't already doing?? Here's hoping others can help, as I only am able to lend my support and wish you the very best.

I won't complain (much) about the heat here the past two days (it broke records here in the SF Bay Area yesterday, the day I went on the bus for my latest blood work), but will wish for you a good share of the heat to help bring you the fullness of Springtime right away! You're welcome to it !

May the sunshine and rain come fully and comfortably so you can walk around in it, discovering the buds and blossoms emerging more each hour, and may the pollen counts be always low (somehow) so that your lungs and sinuses are never over-challenged. (Ah-choo!)

Carry on!

ChrisC

[Trey]

When you take as deep a breath as possible, do you seem to be able to inhale as much air as you normally would, or is it less?  If less, is it due to what seems to be restricted lung capacity or pain?   Both lungs feel the same?

[hannibellemo]

Trey,

Right now I'm breathing fine. I had bridge at my house and was rushing around getting things ready and I experienced no shortness of breath. When I do experience shortness it is more that I can't inhale fully - it isn't a satisfying breath. Both lungs do feel the same and I understand the difference from the earlier effusion. I also experience what is more like a sore muscle, as opposed to a sharp pain, low on my right side when I take a deep breath. That has been going on for awhile though, not sure it is significant.

What is significant to me is that this seems to come and go unlike last year. The sensation is similar but the pattern is different.

Pat

[Trey]

Sounds like a more transient form of effusion, where the lungs can take care of the problem on their own.  It can also be associated with allergies coming on, maybe mold due to the wet weather.  But overall it does not seem like it should interfere with taking the Sprycel.

[hannibellemo]

Thanks, Trey,

I think it could also be an overactive anxiety response coming up on my one year Sprycel resumption anniversary, reading about Billie's effusion on 50 mg., and waiting for the shoe to drop. It embarrasses me to admit it, but as Sherlock Holmes says, "Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth."

Pat

[Tedsey]

Pat,

Sending positive thoughts your way. I think I have the type that comes and goes.  About 1 1/2 years after starting Sprycel (100mg), I started wheezing.  The hem/onc heard it too, but it was mild.  And I have never had any tightness in my chest or restricted breathing or any rigorous activity that brought it on, (you know, the usual "symptoms" of pleural effusion).  Since I don't wheeze every day, like Trey said, it probably gets reabsorbed.  I am just writing this, because I think typical "symptoms" are not typical for everyone.  I could only imagine after such a tough time with pleural effusion, you are probably shell shocked (not to minimize what you said that it could be the pleural effusion coming back, it could be--I hope not).  For example, I still think everything is a sign the CML is getting worse (any pain near my spleen, hips, chest, headaches, etc.).  It is very hard to sort this stuff out when what we have experienced are all symptoms for something greater (CML, PE, etc.) or something less in severity.  Ironically, if my spleen didn't swell in what seemed like a few days, I wouldn't even know I had anything wrong with me (and I thought it was a hernia---I so wish it was...).  That was my only symptom.  So, symptoms are helpful to some degree, but not always.  Ugly anxiety can always pay a visit and mess everything up (that is my demon)!  Uggggh!  I like the Sherlock Holmes quote.  Here, here!

Take care!  All the best and continued good heath to you.

Tedsey 

[hannibellemo]

Chris and Teds,

Thanks so much for the support! I love meeting all the new people on here and hope they will be around a long time. It's the folks who were already on here and those who came on around the same time as I who remain my "best imaginary friends"! Who else would even know what that means?

Pat

[Susan61]

Hi Pat:  So glad everything turned out okay.  I am not even on Sprycel, and I deal with shortness of breath with congestion.  Mine is all from allergies that I have year round.  Right now its the worse it has ever been.

It could be something like that, but we get so nervous when we know what something can cause like what you went through with the PE.  Wishing you the best on your PCR test too.

     I think your doing good

Susan

[alexamay09]

Hi Pat

Since starting sprycel 10 weeks ago I really get out of breath quickly - not quite the same as breathlessness I know, but i've gone from being able to jog 10k before i became ill,  to getting very out of breath climbing a flight of stairs. i've had a mild cough too but doc says there is ni PE.

Hope you find it gets better really soon, and that you dont end up with PE And yes, anxiety is awful. i get dips where i am thinking in overtime due to my cancer history and it makes every symptom feel worse

take care

Alex