This is more for the ones of us that has been on multiple TKIs. I've had great response to sprycel and Tasigna. My problem is the high level of pain. It's my neck,back,and abdominal area. Anyone changed TKI for pain reasons and had good results? This pain has really put me down...physically and mentally. I've even dropped down to 600mg per week. Maintains me fairly well but doesn't decrease the pain. I've had several procedures to burn spinal nerves but that only covers a 3 to 4 inch area and nerves do regenerate and the pain comes back. Any ideas are worth trying.
What TKI causes less pain
Started by
tazdad08
, Jun 21 2017 07:53 PM
6 replies to this topic
#1
tazdad08
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Posted 21 June 2017 - 07:53 PM
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#2
chriskuo
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Posted 22 June 2017 - 01:20 AM
Was there any difference between Sprycel and Tasigna in terms of pain? The side effect profile tends to be significantly different for most people.
It is possible that you should give bosutinib a try if you cannot get relief on your current drug.
It is possible that you should give bosutinib a try if you cannot get relief on your current drug.
#3
jjg
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Posted 22 June 2017 - 06:03 AM
My TKI "resume" is glivec and tasigna. Tasigna causes me more pain but it's not a high level and I function quite well with it (or it occurs at bedtime). Glivec caused me much much more fatigue and nausea which was much more debilitating than the tasigna pain. Low dose glivec might be another option for you?
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
#4
carrie
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Posted 09 August 2017 - 05:22 PM
I just started Tasigna...12th day today. 800 mg. I have major neck, back, and leg pain. My stomach hurts a lot...especially after I eat.
I was on Gleevec for 10 years and it stopped working. This Tasigna is much worse for me but if it gets results that will be good. I have no clue what to do about the pain. I won't go on pain pills.
Diagnosed 2007
On Gleevec for 10 years
Results from 2007-2012 not shown below
International Scale from 2012 until now
Never went to 0
0.166
0.038
1.155
0.789
0.104
0.099
0.701
1.986
1.063
1.799
2.817
1.832
3.449
1.050
1.438
3.376
3.370
3.370
2.580
8.990
4.250
6.176
14.109 Changing to Tasigna 7/7/17
7/28/17 800 mgs Tasigna
10/5/17 600 mgs Tasigna (Lots of bad side effects)
10/16/2017 PCR down to 0.141
1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.
#5
tazdad08
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Posted 10 August 2017 - 07:09 AM
The Tasigna caused short amd quick bursts of extreme pain. It would hit at random times and in random places.... could be my arm, one toe, calf, side of head...etc. like someone hit me with a hammer. Dead stop in your tracks kind of pain. But only lasted for a minute and then was gone. Fatigue and memory was much worse on Tasigna. I stay undetectable on this dose for a couple of years, and then very low level detection. I then up my dose for a month and become undetectable quickly.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#6
jch
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Posted 15 August 2017 - 06:06 PM
One year on sprycel and I'm starting to experience abdominal pain along with leg pain. Sprycel is doing it's job but I talk to the Dr. Thursday about if it's a side effect or something else
P.S. I've followed this forum for just over a year now and it has helped me a lot. Thanks !
Jeff
6/13/2016 100% IS
7/17/16 Started 100mg Sprycel
8/26/2016 4.839% IS
3/9/2017 0.021% IS
7/7/2017 Not Detected
7/27/2017 Sprycel reduced to 70mg
I wanted to drop to 50mg but agreed to 70mg for now
9/9/17 0.079% IS
11/10/17 0.020% IS
12/23/17 0.030% IS Staying on 70mg Sprycel
#7
Kali
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Posted 16 August 2017 - 08:32 AM
I have been on Sprycel for 3 years and just started having abdominal issues with pain, upset and difficulty eating during this past year. Many days could not eat much food and lost ten pounds.
My onc didn't think it was the Sprycel but reduced dose anyway because I also had a small pleural effusion. Reduced to 70 and all the stomach issues went away. Eating great now. No abdominal issues!
Now I am on 50 MGM.
Just sharing in case this is helpful information . My numbers have been PCRU or very near that for at least 1 1/2 years and was MMR before that almost since the beginning of the disease.
Obviously when talking to your onc about your stomach pain, your PCR numbers also matter when considering dosage changes.
Hope this helps.
My onc didn't think it was the Sprycel but reduced dose anyway because I also had a small pleural effusion. Reduced to 70 and all the stomach issues went away. Eating great now. No abdominal issues!
Now I am on 50 MGM.
Just sharing in case this is helpful information . My numbers have been PCRU or very near that for at least 1 1/2 years and was MMR before that almost since the beginning of the disease.
Obviously when talking to your onc about your stomach pain, your PCR numbers also matter when considering dosage changes.
Hope this helps.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
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