6 replies to this topic

[Sumedha]

Hi Friends,

I have been visting this site from last 6Months, but never posted here.

My husband diagnosed with CML in DEC2013 ,6 months ago.His Age is 27 Years and we married 9 Months ago.

BCR-ABL:

Base line : 7.75

3 Months : 5.35

We are bit disappointed with the 3 months result and hoping for the best.

From the past few months he is saying that he is not able to sleep on his left side and feeling some uncomfort, and shortness of breath and informed to doctor on this, he did some examinition with sethoscope and said everything fine , suggested to use calicuim tablets for 2Months.

He is on Gleevac 400MG and the Side effects are Gas Problem and stomach upset sometimes.

Please suggest on this side effect if any one else facing this and also any tests required for him.

Thanks,
Sumedha

[hannibellemo]

Sumedha,

Does the doctor check your husband's spleen every time he visits? It's been almost 6 years and my onc still palpates for mine - he hasn't been able to feel it for a long time. The spleen is often times enlarged and it can take awhile for it to return to normal.

Since you've said gas has been a side effect for him, that could be the culprit, too.

One last thought is a pleural effusion which would need to be diagnosed by chest x-ray or CT scan. That is fluid around the lungs (NOT in the lungs). This can be a side effect of all of the TKIs but more likely from Sprycel.

Good luck!

Pat

[Sumedha]

Hi Pat,

Thanks a lot for your Reply.

All the Best,

Sumedha

[winespritzer]

Dear Sumedha,

I was diagnosed on 1/14/14 and am on 100 mg Sprycel.

I've had some shortness of breath in bed when on my L side but when I roll over or sit up, it subsides.  I've also had it when the humidity is high or when I'm walking up an incline.  The doctor palpates EVERYTHING/listens to my lungs  at every visit. I also have some eye puffiness and he told me to eat low sodium to reduce the edema.  

My 2nd opinion doctor told me that the Pleural Effusion happens in 30% of patients on Sprycel and comes on slowly, so I am just being very observant and cautious about this.

My reg oncol said the most imp thing to know about the milestone numbers we all pray for is that they are decreasing. So I am practicing meditation to stay calm!!!!  Walking helps also.

I recently had 2 instances of some redness on a finger and then a week later on the hand and wrist.  I called, went for blood work and the doctor said it wasn't from Sprycel and didn't know what it was.   But I do not regret calling or seeing the doctor. My blood work did improve in 1 week - red blood corps, white blood and platelets all increased.  And the redness is gone. 

So I think to sum this up, keep the communication with the doctor tight.

I wish you a very happy marriage! I can tell you are most thoughtful.

Winespritzer

[Sumedha]

Thanks a lot Winespritzer for your reply.

Hi Trey,

Need your opinion on this.

Thanks in Advance!!

[Trey]

Since he is responding to drug therapy, the pain is not likely caused by the CML itself.  So it is not a sign that the CML is getting worse. 

After the spleen has been so enlarged by the CML it is essentially "bruised", so it will continue to be painful for quite a while, possibly 6 months or so.  This may be the cause and not a concern if that is the issue.  The shortness of breath could be unrelated in that case. 

But since he has shortness of breath,  he should have a chest Xray to look for pleural effusion.  Gleevec does not usually cause pleural effusion as often as Sprycel, but it can in some patients.  The fluid can build up around the lungs and diaphragm  and push on the organs in those areas which restricts lung function and can cause internal pain. 

I would not be concerned about the PCR.  Wait and see the next PCR report.  I would prefer to have a FISH test until CCyR is achieved since FISH is more accurate.

[Sumedha]

Thanks Trey for Valuable Suggestion.