4 replies to this topic

[Puneet]

Hi Folks,

 

My wife has been newly diagnosed with CML about one month ago. She is 42 years old and is having Sprycel 100 mg every night. Initially she had severe headache and nausea which I believe is an effect of Sprycel settling in. But last Friday, she had a severe case of breathlessness (could hardly breathe). Fortunately, I was at home and helped her lie down and recover from there. But ever since, she has been having some pain in her chest area (possibly ribs though not sure).

 

Has any body had this pain.... is there a reason for an alarm and talk to the oncologist. She has been weak since her diagnosis and is mostly tired. Any information would be helpful.

[hannibellemo]

Not to alarm but she should let her doc know and she should probably request a chest x-ray just to rule out pleural effusion. Often referred to on this site as PE, incorrectly, I might add as if you say PE to a doc he is going to think Pulmonary Embolism - much worse! However, PE is faster to type for us.

 

Pleural edema is fluid inside the double lining around the lung - NOT fluid in the lungs. It can compress the lung not allowing for full expansion. This is a known side effect for sprycel and several of us have experienced it - most later rather than sooner after starting, around 2.5 year mark. Something to keep in mind. I am still on Sprycel, but at a lower dose, 50mg, and have been for almost 3 years since my PE.

 

However, I also experienced severe fatigue and breathlessness during the first 4 months without PE, so it could just be the "getting acquainted" period most of us experience with all of these TKIs.

 

Good luck and let us know what you find out. I wish your wife all success with Sprycel!

 

Pat

[sunshineC]

I am fairly new at this also.  I was diagnosed and put on 100mg Sprycel in early March.  Don't want to make anyone feel worse, and remember, everyone reacts differently, but I can tell you I experienced severe headaches, nausea and exhaustion in the beginning.  I bascially couldn't do anything but lay on the couch drifting in and out of sleep.  For me, every now and then I would have a good day - no side effects, but not many.  They did come gradually with time.  It was very frustrating for me because I felt like I wasn't getting better, faster.  I started back to work at an office job in July and still have not been able to put an entire week together.  I too experience shortness of breath and some chest pain/pressure even now, here and there, but it was much worse in the beginning.  I'm in the process of changing specialists and the shortness of breath also seems to be getting better so I will wait until I see my new onc.  But as Pat said, I have read several times about the risk of PE.  It's nothing to fool with and if you wait too long, I think possibly can do permanent damage.  Always at least worth a call. 

 

Glad you found this site.  You can get some great information here.  And for me, even tho I have a very supportive family, I still felt very alone in this until I found this site.  People are very open, honest and friendly here, as I'm sure you'll see.

 

Wish you both all the best!  and don't forget to show this site to her when she gets feeling better.

[Puneet]

Thank you Pat and Sunshine. My wife is feeling much better now and has some lingering effect. My wife did bring it up to her onc yesterday briefly but looks like he is not much concerned about it. So, we'll keep a watch on it and definitely discuss it with the onc when we meet him next.

 

She has had a lot of nausea, headache and exhaustion in the first month of treatment. Most of it has lingered off but for exhaustion - she has mostly been tired and sleeping on the couch quite often. But that does not bother me because I know this is the effect of drug settling down. We are not new to Leukemia as six years ago my then 7 yr old daughter was diagnosed with Pre-B ALL and has been successfully treated. So, we have been on this community site just on a different board. I know how this community works and will always be grateful to the support provided in this virtual world!!

 

Thanks,

Puneet

[VickiW]

Wow, Puneet,

you have already dealt with a much fuller plate than most of us!  So glad to hear your daughter came out the other side!!!  Tell your wife to hang in there, it really does get better.  Thankfully she was able to skip over the dreaded Gleevic, now that is a drug with some truly nasty side effects that don't "cycle".

 

Tell her the fatigue should start to get better soon.  Whether or not it will totally go away is an individual thing.  I'm sure you already know that these little life saving pills we all take everyday really are powerful chemo drugs waging war against the CML so it's not surprising that sometimes we have to deal with some battle fatigue!

 

Please pass on to her (and you too) that we are all here for each other just as those on the other thread were for your daughter.

 

Keep us posted!!!!

 

Ooops.  forgot to mention.  Just like Hannabello, I too had problems with pleural effusion but I also developed cardio-pulmonary effusion at the same time.  Pretty rare to happen that soon but wouldn't hurt to have it checked out.  After that, I know it might sound counter intuitive, but exercise does help with the fatigue, even just a nice, short walk at this point.