8 replies to this topic

[martap999]

I turn to all of you with a question- my breathing has gotten quite labored lately although when I try to take a deep breath for the most part I can do it - mostly I notice that I take short quick breaths - I get fatigued easily much more than usual- I am also coughing a bit more although my lungs are not congested-I am due to go to my onc at the end of February - is this no big deal and due to the Sprycel ? My lungs feel pretty clear but should I move up my appt or is it possible that this is normal and I am making a mountain over a molehill?? Thanks guys - sharing with all of you helps me so much especially knowing that I am not alone - Marta

[r06ue1]

I also felt that way for a period of time, perhaps the first two to two and a half months but since then have not had any issues.  I was also having some irregular heart beats (palpitations), went to ER and they did the full work up on me and found no problems.  My blood pressure and heart rate have been fine since then so I guess that was just my body adjusting to the medication.  How long have you been taking your medication?  I am on Gleevec so that could be a little different than what you are seeing and everyone has different reactions to the medication even if it is the same medicine.  If you just began the medication and you have reported the breathing to your oncologist and he isn't concerned than I would just listen to him and try not to worry too much about it as it could be from your body making the adjustment to its new norm.

[hannibellemo]

Marta,

 

Pleural effusion is a fairly common side effect of Sprycel. (Fluid buildup in the sac surrounding your lungs.) As the fluid builds up it pushes your lung up and does not allow you to fill the lung completely. 

 

If you have not had a chest x-ray to rule this out I would call my onc and do this immediately. If it is a pleural effusion it will not go away on its own.

 

Good luck!

[scuba]

Marta,

Go see your doctor to rule out pleural effusion. Caught early, it can be effectively treated. If it is pleural effusion, then cutting back your Sprycel dose or even drug interruption will be necessary. Do not wait on this one.

 

On fatigue - Sprycel affects the thyroid gland:

 

http://www.ncbi.nlm....pubmed/20929406

 

Much of the fatigue attributed  to TKI's is really the effect TKI's have on thyroid gland not producing enough hormone (drug induced hypothyroidism). At M.D. Anderson, they now have added Thyroid hormone panel to their routine blood tests. Knowing your TSH, free T3 and T4 numbers will help in treating fatigue. You may find your T3 levels low (and TSH higher than normal). Exercising can help counter low thyroid hormone (and relieve fatigue).

[snowbear]

I'm having similar problems, only I take Gleevec.  I get short of breath and chest pain on minimal exertion.  I had this, but much worse than now, just prior to being diagnosed and it went away within a few months of beginning the Gleevec.  Now it's back and my LDH is rising.

 

My Hema/Onc never believed that my SOB was from the CML - she thought it was due to a rheumatologic disease in which I had been previously diagnosed with both RA & Lupus, but my Rheumy dismissed when I got the CML diagnosis.  I think she wants to blame all of my problems on the CML and was hoping it would all go away, but after a year on Gleevec, it's becoming clearer that I do have lupus symptoms.  So is it the CML, or SLE, or a side effect of the half dozen meds I take?  I'm a diagnostic nightmare for the docs.

 

I'm seeing an ENT next week for chronic swollen salivary glands and swelling in my throat. Hoping he will at least do a lip biopsy this time. I've been thru this before - CT scans show swelling of glands and the deep lymph nodes and inflammation.  Steroids and methotrexate bring it down, but I can't take the methotrexate anymore because of the CML.  I don't have many options anymore - possibly Rituxan infusions but I've been trying to avoid that.

I hope you get answers and get to feeling better soon.

[mlk210]

Marta - I just had a plural effusion in December from Sprycel. Call your Primary or Onc for a chest X-ray. Better to know as soon as you can.

 

My symptoms: I could do the movement whether it be walking up stairs or to the bus stop with my kids but after I stopped I'd have to wait to catch a full breath. Sleeping was hard in certain positions. i didn't have any coughing.

[martap999]

Thank you all - you have no idea what having all of you to support and encourage me in this difficult road we are all on means to me -

[mikefromillinois]

Hi Marta,

 

All great advice given above.  I would only add that in my case (on Sprycel for 4 years) I too experienced symptoms like yours.  Once I asked my oncologist if I might have PE and he said 'you would know it if you had it - you wouldn't be able to breathe'.  Based upon his "confidence" in the matter I let it slide.  In time it got much worse, but the scary part is that it SLOWLY gets worse.  It sneaks up on you, and then one day it is really bad.  Best to have it checked soon.

 

Mike

[hannibellemo]

Hi, Marta,

 

Just a caution, if you talk to your onc about a "PE", he/she will think you are referring to a pulmonary embolism, a much more serious condition. Use the words pleural effusion.

 

We say PE on here I assume because it is a somewhat common side effect and PE is quicker and easier to write, but it really isn't correct terminology.

 

Good luck!