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#1
Posted 31 January 2015 - 11:08 AM
#2
Posted 31 January 2015 - 01:12 PM
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
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
Posted 01 February 2015 - 12:34 PM
#5
Posted 05 February 2015 - 08:38 AM
#6
Posted 05 February 2015 - 11:34 AM
Could be diverticulitis. Get a colonoscopy.
#7
Posted 06 February 2015 - 11:08 AM
#8
Posted 06 February 2015 - 11:09 AM
#9
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
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
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
Posted 18 February 2015 - 10:29 AM
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)
Cancer Sucks!
#13
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
Posted 19 February 2015 - 03:32 AM
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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