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Is Sprycel bad for side effects?


Mom (nearly 81) is showing a positive test resurgence for her CML, and the doctor wants to put her back on meds after remission for a few years.  She's very sensitive to meds of any kind.   She was on Tasigna, but had vascular complications and can not take that again. 

Last month he gave her imatinib and she swelled up and was also very sick.  She had almost constant diarreah for a month.  She was getting dizzy and some other things so he had to take her off.  She could not even tolerate her dose being halved.  She was also really out of it.

So now he wants to start her on Sprycel just at the bottom low dose of 20 (20 what I'm not exactly sure).  I'm so worried that she will not be able to tolerate anything.  

She is taking a water pill but she hates that.  She's keeping it for now.

Am I correct in understanding that, disregarding the vascular side effects of Tasigna which prevent her from taking it, all the other drugs are worse for general side effects?  Is there anything she might be able to take that is not so horrible?

Thank you


I am on 20 mgm of Sprycel and have no side effects. I am at 0.0000 on this dose as well for the PCR test.

i hope your Mom does well on this dose, because it is wonderful to be on a low dose that is working!

Thank you Kali.  So glad to hear that is working so well for you.  That's encouraging.

Have you had side effects on other meds? 

I am also on 20 miligrams sprycel taken at night before sleep with no side effects that I can feel. My PCR is "undetected".

So sorry for your mom’s misery and your worry!  I was very sick with imatinib and found the switch to Sprycel a tremendous relief. I had also found that the diuretic (water pill) caused me a lot of grief, without helping with the edema on imatinib. I would think it would hit your mother even harder at her age, as does everything. I’m now on 20 mg of Sprycel and have no side effects that I notice. Get her off the diuretic and on to 20 mg Sprycel and see how her PCR looks. 


In response to your question, “Have I had side effects on other meds”, I have only been on Sprycel. At 100 mgm, I had a little bit of hair thinning (not much) and fatigue and eventually shortness of breath and gastric upset. Reduced to 70 mgm and then to 50 mgm. 

In 50 mgm, all side effects went away except for shortness of breath. Had a plueral effusion that started out small and over a couple years advanced to significant. Had to get the fluid off and was off Sprycel for 4 months. My numbers were gradually increasing by the third month, but I was still better than MMR. I decided to go back on Sprycel 20 mgm and things have been great!! No side effects that I am aware of and no shortness of breath!! Also, back to all 0.0000’s in a short amount of time!

I hope things go great for your Mom at 20 mgm. 😊 


My situation sounds a little similar as Kali.

CML verified Feb 2018

Started with  100Mg of sprycel for  about 1 month before the shortness of breath was so bad I felt like I was running a marathon when I was

just going up a half flight of stairs!

Dosage was reduced to  80 mg and then to  50 mg.

I have been on 50 mg for about 1 year but the shortness of breath is still bad and now the plural effusion has gotten worse from last year.

I have been taken off of the sprycel since May 24th and will be off of it  till the first week of July to see if there is any improvement and to make sure

its the medicine causing my shortness of breath and not my COPD ( Heavy smoker for over 32 years before I quit in 1992)

My Primary Care DR. is a Pulmonary Care Specialist and wants to see if there is an improvement off of the sprycel before going with draining the fluid.

I have improved tremendously being off of the sprycel in the last 23 days!  Very little shortness of breath and much more energy plus I have gained 3lbs

in weight also!

The Sprycel works, just have to deal with the right dosage to counter the  main side effects of shortness of breath and plural effusion in my case.

 4 quarterly blood tests have also been excellent on the 50 mg dosage, the highest was .008 and 3 have all been 0.000- not detected.

I will definitely be pushing for a 20 mg dosage when I see both my Primary Care Dr. and Oncologist the end of this month.


* All the best to your MOM! *










one month diarreah + water pill ...

if they hadn't check it yet , i think they really check her sodium and electrolytes levels. 

it seem like drug-induced diarreah but they should perform a stool test too, just in case . 


about diarreah, my mother had it like 3 weeks in 2016 when we first start iron supplements. as what i remember, if diarreah is caused by drug , like in our situation only solution is not to take that drug :(

diet , anti diarreah drugs, home remedies nothing helped the situation .

so they give up  the iron pills(diarreah gone ) and want to give iron by iv. my mother didnt want it , but a few weeks later she started iron pills by her own. guess what diarreah didnt come back. 

i hope thing go better for your mom.


Hi all, 

Thank you for your replies.

She is having side effects but she's going to take it and watch it a little longer.   She says she feels sick on it though.

Oh, she just had a blood test and other than the BCL-whatever issue, the rest of her labs look good (CBC, urine and so on).  Doc did say she needs to drink more water.  She tends to not drink enough and also to eat like a bird.

So... she's taken Tasigna, Imatinib, and now Sprycel.  If she can't tolerate these, what are her options? She is very sensitive to medications. Keeping in mind this is meant to address a recurrence issue - she was in remission, went off the Tas for a few years, and now needs to go back on something.  

these are the treatment options we have at this point i guess , but i dont think you can say lets try this before taking other health problems in account.


eating like a bird means eating less i guess.


there are some nutritional drinks for people having hard time with eating ( mostly cancer patients ) 

like nestle resource , but i guess they are containing milk so i dont know it is good idea to drink it when you have diarrhea.


Maybe changing the time of taking drug or foods eaten before may help.


i hope it gets better .


I'm concerned now because she is having the shortness of breath.   It doesn't happen all the time, but when it does it's bad enough that she'll be walking and then be out of breath and say she feels like she's going to pass out.  Seeing that she's 81, that's even more a concern because a fall could be really concerning.  But mostly it makes me wonder, if this is happening after 2 weeks on only 20mg, what will it look like if more med level gets in her system?  What does this mean in terms of her overall health? 

I have noticed also that although her cough comes from her hydrochlorothiazide (water pill), she tolerates that generally ok but it seems that her cough got worse on the imatinib and the sprycel.  She doesn't think so, that's just my obeervation, so maybe I"m wrong. 

She's sick on the imatiib, the sprycel makes her sick (probably would be as sick as the imatinib if she was taking the full dose, so I'm guessing it's not much better for her, just less of it).   The nolotinib (Tasigna) caused her severe arteriosclerosis blockage that required major vascular surgery. 

She was just getting off the drugs and back to normal when she had to start taking them again. 

We are not sure what to do. 

Real sorry to hear your mom is getting very sick on the 20MG of Sprycel.

What does  her oncologist say about the meds and the real bad side effects etc? 

All the best to your mom!




Thanks Chuck

He put her on the sprycel 20mg because her side effects were so bad with the others. He was hoping she could tolerate that.

It's been two weeks and we've not seen him yet with a report on the new stuff.

My husband had to go off Sprycel because of shortness of breath.  He never developed pleural effusion. He is 75 ad in great shape.  He was on 70 mg and then 50 mg.  I have followed all the forums on this topic and this is the first I’ve heard about 20mg causing side effects.  I hope she can tolerate it and the SOB doesn’t get worse.  

My husband is currently in TFR (15 months).  The SOB took about 6 months to go away entirely.  His numbers are creeping up and if they stay above .1 consistently he will go on Bosulif 100 and titer up from there.  I actually wanted him to consider 20 mg Sprycel but after his SOB experience he doesn’t want to. He is hoping to be on a low enough dose of Bosulif not to have its legendary diarrhea or for it to be transient. 

Hope your mom gets better.  

THank you for all your replies.

She is having heart palpitations when she is out of breath. She has to sit down.   Did you guys have that?  Also, it seems random - the shortness of breath/palpitations don't happen all the time.  She can have it when she goes to do laundry, then the next time she goes out there, she's fine.

She's also on some other meds but they weren't causing this problem before.

Going to talk to her doc this coming week.