8 replies to this topic

[CallMeLucky]

I've been on Sprycel for 30 days.  about a week into it I started having some discomfort in chest after flying.  The discomfort is pretty much only on the left side.  I feel irritation in the chest wall.  I can take a deep breath with no problem.  I started coughing about a week or so ago.  Wasn't sure if it was a cold or not so trying to wait it out, but now it doesn't seem like it is a cold, again seems like irritation and it comes and goes.  Things are worst when I am sitting, if I am lying down I am fine and standing up is usually better.  I continue to have a lot of pressure in my chest and continuously belch which relieves the pressure temporarily until it starts to build up again.  Sometimes when I feel it a lot if I move around by shifting my upper torso from side to side, I can feel the air bubble moving until I belch.  The other night I had a couple of hours where I felt like I couldn't take a deep enough breath no matter how deep I drew in.  It didn't hurt, but I just couldn't seem to get in enough air.  This was after I had done some walking in the city, which also seemed to make my heart race a little which seemed odd since I was not exerting myself, but I felt as if I did.  Overall I feel pretty good on Sprycel but this issue in the chest is concerning.  I had my GP listen to my heart and lungs the other day and she said everything was clear.  I had a chest x-ray two weeks ago after the flight and that was clear too.  Not sure what to do.  I see nurse on Wed for PCR draw and then see Onc two weeks later.  I will continue to discuss with them.  I'm frustrated because I feel I am being over medicated.  I am on 100mg per day following a switch from Gleevec.  My last 2 PCRs were negative and I have been mmr since 11 months post diagnosis.  I'm not sure how to proceed.  I see myself having to get off Sprycel if this keeps up, I can't stay on it knowing that it is causing this, but I don't want to go to something else, because I otherwise feel fine, so much better than on Gleevec.  The things is, I don't even know what this is.  It doesn't seem like PE.  In some ways it seems like it could be mild PAH if there is such a thing, but I am trying to be realistic, PAH is exceptionally rare, I think there were less than 10 people reported with it from Sprycel and they were all on other meds or had other health issues.  My heart and lungs are in great shape going into this.

If anyone has any thoughts, I'm happy to hear them.........

[scuba]

Hi Gary,

It could very well be mild PAH. You are on full Sprycel dose (100mg) and in PCRu. Not much for the Sprycel to do sort of speak. I go for my own PCR this Tuesday (3 month check) and I am very close to PCRu. If I come back "undetected", I was able to that on only 20mg. Sprycel.

You should consider lowering your dose. My dose was lowered by Dr. Cortes due to myelosuppression, but he won't let me increase it even though I wanted to (in order to get a quicker response) once I overcame the low counts (near normal now). When patients are in PCRU, I don't understand why Oncologists keep them at full dose - especially a drug like Sprycel. Makes no sense.

[Trey]

It sounds like you might have mild ascites, a fluid build-up in the upper abdomen.  The fluid would be around the diaphram rather than the lungs.  This causes pressure on the lower lung(s), stomach, and other organs.  Ask your doc about this.  Sprycel can cause it. 

PAH is a serious issue, and although it sounds less likely, you need to make certain it is not PAH.  But the belching and lung pressure relief issues suggest abdominal fluid.  PE would be worse lying down and would show up on xray, so not likely unless in very early stages and low in the cavity.

Lower dosage would be a reasonable approach.

[CallMeLucky]

Thanks for the feedback.  I am also considering if this could be GERD.  Although I do not have heartburn, the tightness in the chest, constant burping, and cough are all symptoms of GERD.  When I went to urgent care after the flight issue, the Dr there said he thought this was a a GI issue and not a pulmonary issue because from pulmonary standpoint everything seems clear (although I know PAH is hard to Dx and not obvious on exam) Still I find myself thinking that this really doesn't line up with PAH given the symptoms, but of course that is the worry.  I will have to see what they say tomorrow.  In the mean time, I skipped my pill last night, but took it this morning, I will take next pill tomorrow night, effectively going to 36 hour dosing temporarily.  I am trying to ease things for a few days without stopping and see if anything lets up.  From what I read about PE the incidence was higher with people who took twice a day dosing, so I figure if I spread it out a little more it could help if it is related to lungs.  Also this is a back handed way to lower my dosage temporarily.  Not something I want to do and probably not smart but I figure for a couple of days since this stuff always happens on the weekend, it makes sense.  If it does turn out to be GERD, I'm not sure what would even be done since I believe you can't take the GERD type medications with Sprycel.  Will have to see.  lower dosage would probably be smart but I know my doctor is not going to do it, so I may have to make some decision.  Switch to Tasigna, or go find another Dr who will go lower dosage on Sprycel.  I guess I'll see what happens on Wed and go from there.  Hopefully they won't try to blow off the issue.  I already got "maybe you just have a cold".  Not sure how cabin pressure causing chest pain and subsequent pressure in chest is related to a cold, but I think they are less inclined to link my symptoms together and prefer to look at them individually. 

[BY196]

Hi Lucky:

Sometimes I think you are my doppelganger! I have a very similar problem--I even went to the ED last September (2011) because my husband was so worried I was having something heart-related. (That would be unlikely, since I'm 45 and in good health, but my father had a heart attack at 49.) Nothing heart-related was found and pulmonary causes (including pulmonary embolism) were ruled out. Since that time, the pain has spread to my ribs, especially my lower ribs and especially on the left side. I still have the pain/rightness in the front too.

I was also having some GERD-type symptoms when this first emerged. Because of the medication interactions you describe, I looked for other ways to deal with it and ended up cutting gluten out of my diet, which worked almost immediately. A few months later, I also discovered I was hypothyroid and began taking thyroid hormone (first Synthroid and now Armour). I have since learned that hypothyroidism, which my endocrinologist says can result from TKI therapy, is associated with low stomach acid, which can cause GERD-like symptoms. I have not had the GERD symptoms return but given all the confounding factors I'm not sure to what I should attribute that. (Maybe it's just luck or the placebo effect.)

Finally, I am observing now that these pains seem to be worst for me in the winter. Although I could feel mine in the spring and summer they were more of the annoying variety. In the last couple of months, they have increased in intensity a lot, leading me to think there may be an affective component. I explained all of this to my primary care doctor, along with my increased sleepiness and irritability of late, and she agreed that I may well have seasonal affective disorder, which can lead to increased musculoskeletal pain. (For some people, depression manifests primarily in somatic ways rather than negative thoughts such as hopelessness/suicidality which I do not have.) I have just started light therapy; we'll see if that helps. As well, Cymbalta (duloxetine) is approved for musculoskeletal pain and does not interact with Sprycel. I may trial that if the light therapy does not give me enough relief.

Good luck!

Beth

[Trey]

Although abdominal swelling may be from Sprycel alone, hypothyroidism can also cause or exacerbate abdominal swelling.  Could be what Beth is experiencing, also.  The GERD may be a response to the pressure on the stomach from excess fluid in the abdomen.  If it was just GERD, you would not have the significant lung issues you described. 

[CallMeLucky]

Well they had me come in for a chest X-ray and then decided to scrap that since I had one a couple of weeks ago and go for chest CT and cardio echo.  They want to rule out embolism and PAH.  So that will be my whole day waiting for these tests, I guess better safe right?

The strange thing is they said if they do not find anything they are still going to stop the Sprycel.  I haven't spoken to my doctor so I don't know what that means yet.

I guess I'll wait for test results.

[CallMeLucky]

Test results came back normal, no PE, no PAH and no fluid build up around heart or abdomen.

So this is looking more like a GI issue, some type of GERD.  Not sure what to do.  When I left all they told me was to not take anymore Sprycel and to follow up with onc tomorrow.  So now I am wondering what she is going to do.  Is she going to say take a break and see if it settles down, then restart - if so will be at lower dosage?  Should I take any type of antacid or something like that, or is onc going to go in completely different direction and want to switch right away to Tasigna.  I guess I'll find out tomorrow.

In mean time since I am not taking pill tonight I am going to go get some Prilosec and see if that calms the symptoms which would reinforce if this is GERD or not.

Had blood draw for PCR - not sure what to expect but I guess it will be what it will be.

[Trey]

How did they determine there was no excess fluid in the abdomen?  It is not so easy to find in smaller amounts.  Lungs are easier since they are large hollow areas and fluid can be seen on an Xray as white areas.  Not as simple for the abdomen.  Your post title relates primarily to  chest discomfort.  While GERD can have a minor impact on the chest, you describe significantly more discomfort than GERD would cause.  And GERD is usually worse lying down, and you said it was better when lying down.  You may have more than one issue going on here.