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sprycel side effects change ove time?

sore stomach

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#1 Mr.Tee

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Posted 31 January 2015 - 11:08 AM

Removed



 


#2 chriskuo

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Posted 31 January 2015 - 01:12 PM

If it lasts a few more days, definitely contact your doctor.

Have you had blood tests recently? Is there anything out of range? I did not have abdominal problems with Sprycel, but on other TKIs.
In those cases, something would show up on the blood tests.

#3 Trey

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Posted 31 January 2015 - 04:30 PM

Describe exact location (inches down from sternum bottom or up from belly button, front or back, center or off-center, stabbing or dull, etc).  Also, do you have breathing problems?



#4 chriskuo

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Posted 01 February 2015 - 12:34 PM

In another thread, Mr Tee mentioned shortness of breath and I asked if he had been checked for pleural effusion, which is a common side effect of Sprycel.

#5 DebDoodah22

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Posted 05 February 2015 - 08:38 AM

Magnesium deficient? You may be constipated...go back and see what the Drs. say. Sorry for your pain, these things can be worrisome. Let us know.

#6 Trey

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Posted 05 February 2015 - 11:34 AM

Could be diverticulitis.  Get a colonoscopy.



#7 Kittywatkins

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Posted 06 February 2015 - 11:08 AM

Hi, I was on sprycel 100mg for almost 2 years and had so many side effects from it including the stomach issue. I too had a very similar attack like yours and nothing showed up. I too blamed it on a gulbladder attack. After reading these threads and thank god fir this site. I decided that my Onc should bring down my dosage to 70mg. Well, that was in November and when I went to order the new dosage because I waited for the new year my copay was $2,500.00. I just couldn't pay for that so I went and followed up with Bristol Myers and sprycel for assistance. I just got the approval for the sprycel one card and bought the copy down to $25.00. Thank god! What I'm trying to get at is that every complaint I had, the Onc was quick to say it has nothing to do with the cml or sprycel. Well, during that time of not being able to take the sprycel. Not gonna lie I stopped in November until now. Almost all side effects have gone away including my stomach pain. Although strongly advised not to go on a holiday drug, I'm kind of glad I did because now I know that every side effect I was having was due to the sprycel! Now I know that I'm not having a heart attack or that I have a brain tumor cause of the headaches or that I'm loosing my mind cause of the brain fogs. Or that the rashes on my legs are NOT bed bugs! (My Onc told me to steam my bed I might have bed bugs! Ha!!!). I still have some lingering side effects but that's ok because now I know how to handle them. I was so depressed that I was just giving up on life. On Monday I'm going to get some blood work and that day I will start my 70mg of sprycel. But I have such a great outlook on life now. Bring it on side effects!!! I'm ready to fight!!! Good luck and I love all my fellow cml friends!!!

#8 Kittywatkins

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Posted 06 February 2015 - 11:09 AM

Sorry for the horrible spelling

#9 valmaria

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Posted 11 February 2015 - 04:45 PM

I was recently switched back to Sprycel.  Been on it now for maybe 4 months. The side effects as usual are horrendous.  My headache has never gone away, I still have it.  I wish I could plead for my life back but we all know how much good that would do. I am beyond tired every single day, this is not me. I was dx 4 years ago today and have never been in remission. I have been on every TKI more than once. Well not every one....I refuse to go on Ponatinib.  I have everything from bone pain to muscle spasms, brain fog beyond belief, rashes....bad day for me today, just want my life back. This is one person you won't hear anything good from when it comes to these TKI'S. I guess the only thing positive is that I am blessed to still be here.



#10 Billie Murawski

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Posted 11 February 2015 - 06:02 PM

I was recently switched back to Sprycel.  Been on it now for maybe 4 months. The side effects as usual are horrendous.  My headache has never gone away, I still have it.  I wish I could plead for my life back but we all know how much good that would do. I am beyond tired every single day, this is not me. I was dx 4 years ago today and have never been in remission. I have been on every TKI more than once. Well not every one....I refuse to go on Ponatinib.  I have everything from bone pain to muscle spasms, brain fog beyond belief, rashes....bad day for me today, just want my life back. This is one person you won't hear anything good from when it comes to these TKI'S. I guess the only thing positive is that I am blessed to still be here.

Magnesium is very good for muscle spasms. I take 250mg. a day and I haven't had one for over 3 years.



#11 Kittywatkins

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Posted 18 February 2015 - 08:38 AM

I was recently switched back to Sprycel.  Been on it now for maybe 4 months. The side effects as usual are horrendous.  My headache has never gone away, I still have it.  I wish I could plead for my life back but we all know how much good that would do. I am beyond tired every single day, this is not me. I was dx 4 years ago today and have never been in remission. I have been on every TKI more than once. Well not every one....I refuse to go on Ponatinib.  I have everything from bone pain to muscle spasms, brain fog beyond belief, rashes....bad day for me today, just want my life back. This is one person you won't hear anything good from when it comes to these TKI'S. I guess the only thing positive is that I am blessed to still be here.



I feel the same way! That's why I don't understand why we are not considered for disability! They denied me and now I have to endure these new side effects! Wish you well!!!

#12 rcase13

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Posted 18 February 2015 - 10:29 AM

I agree, it is insane we don't qualify. Some how I am supposed to perform my job as a Solutions Architect and yet forget what I was working on five minutes after I start.

We are supposed to pretend everything is normal while taking these drugs that are doing who knows what to our liver, spleen, thyroid etc. Every blood test I have I see the numbers creep up. So while I am working and staying focused my mind is constantly wondering is my liver going to be OK? Am I going to have heart issues?

People ask me how I am doing... I smile and say I am doing just fine...

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#13 Kittywatkins

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Posted 18 February 2015 - 12:13 PM

I agree, it is insane we don't qualify. Some how I am supposed to perform my job as a Solutions Architect and yet forget what I was working on five minutes after I start.
We are supposed to pretend everything is normal while taking these drugs that are doing who knows what to our liver, spleen, thyroid etc. Every blood test I have I see the numbers creep up. So while I am working and staying focused my mind is constantly wondering is my liver going to be OK? Am I going to have heart issues?
People ask me how I am doing... I smile and say I am doing just fine...




I feel the same way. I worked with patients all day and when I felt tired it would show in my face. I felt hot I didn't realize my face would get beet red on top of having a rash. The patients would look at me like I needed to see the doctor. Oh and not to mention my big ass brain fogs! I'm still suffering with bone pain and back pain. But who cares! You gotta keep on keeping cause disability don't care!

#14 Gail's

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Posted 19 February 2015 - 03:32 AM

It really reassures me when I find that the symptoms I'm experiencing just are the meds and cml. And not all in my head! This group's insight and real in the trenches with you attitude is so helpful!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




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