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#1 tazdad08

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Posted 08 June 2017 - 11:12 AM

I'm on a very low dose of Tasigna. Have back and neck problems also. I have had the occasional bad pains around the spleen area that sent me to the er a few times. Those ended almost 2 years ago.. the last month I've been having pains in my abdomen in the front and back... very uncomfortable but not enough to double me over. Anyone else have thoughts on this?

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 cmljax

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Posted 08 June 2017 - 12:39 PM

On Tasigna for 8 months and while I've had a lot of other stuff, some bad and some worse, never bad abdominal pain.  What is your current Tasigna dose and what have your PCR's since gong to that dose?


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#3 Trey

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Posted 09 June 2017 - 08:29 AM

Need a colonoscopy.  Could be diverticulitis, but other possibilities exist.



#4 cmljax

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Posted 09 June 2017 - 08:49 AM

My wife has had numerous bouts with diverticulitis and it is nothing to mess around with. It also comes with a fever. It has almost killed her twice, resulting in hospitalization and strong IV antibiotics.  She has diverticulosis (pouched in the colon) throughout her colon so resection of part of her colon is not an option.  She has managed to control it much better through diet and meal size changes.

 

You should see your PCP immediately just in case it is diverticulitis, and Trey is right, the only way to tell for sure is a colonoscopy, which is able to detect/see the pouches in the colon.


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#5 jmoorhou

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Posted 09 June 2017 - 12:07 PM

It could also be Irritable bowel syndrome, there's alot of info on the web.  What works for me is 4 - 6 gel caps of peppermint oil per day. 


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#6 tiredblood

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Posted 09 June 2017 - 08:19 PM

Or a CT

#7 carrie

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Posted 09 August 2017 - 05:26 PM

I did Gleevec for 10 years. Just started Tasigna. 800 mgs. I have been on it for 12 days. I now have stomach aches, especially after I eat. Someone suggested bloating/digestion. I never had problems with my stomach. I have noticed I burp up air now also. I was going to ask my Onc about it when I go in next. Wish I knew more.


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.


#8 cmljax

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Posted 11 August 2017 - 07:24 AM

Try Digest Gold digestive enzyme before meal, a good probiotic and chew fennell seeds right after eating


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#9 SandyG353

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Posted 14 September 2017 - 04:36 PM

My daughter has many days that she cannot eat.  Each bite she takes creates pain.  She has been through  all tests and no one can figure it out.  We are wondering whether it is a side effect of Gleevec.  Another friend of hers is on Gleevec and has the same problem.  Any suggestions?  I saw the peppermint gel as something to try.  She is taking probiotics.  Anyone have any suggestions?

Trey, do you think Gleevec is causing it.  Every sip of water hurts and every bite of food.  She eats a lot of Sushi.  Can that be it?



#10 gerry

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Posted 15 September 2017 - 01:48 AM

Sandy - where exactly is her pain and what sort of pain is it, sharp, dull, etc

#11 Sneezy12

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Posted 15 September 2017 - 06:43 AM

If it's Epigastric pain, Pancreatitis should be excluded.

#12 SandyG353

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Posted 15 September 2017 - 01:18 PM

In response to gerry, my daughter's abdominal pain is dead center by the belly button and about an inch or 2 below it.  It is like a punching pain. She , also, describes it as throbbing , not sharp,but feels like a punching pain.  Pancreatitis has been ruled out and so have other conditions.  She has gone through all g.i. tests and there is no answer.  I am beginning to think that it might be occurring after she eats sushi or it is a side effect of Gleevec.  Possibly rare, but another friend of hers who is on Gleevec has the same pain in the same spot.



#13 ROMO

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Posted 15 September 2017 - 04:11 PM

Serious diverticulitis would mean a breach in your colon. If your still walking and talking you
don't have this. Irritable bowel syndrome is a generalized your tummy area hurts.
But it's a good place to start.
If your troubles can be identified in your stomach. Hears my nonexpert 3 cents.
 
Your stomach has a mucus membrane that is renewed constantly. The younger you are the more
robust this renewal occurs. Some people have a cast-iron stomach.
I think your stomach is getting tired. You been enjoying great fool while eating a TKI.
Out body is our team. Your brain want's it but mabey your stomach don't.
Bland out your diet. Your running a long distance race . Maybe your stomach needs to slow
down. Certain parts might wear out. Other parts will be renewed for the longer haul.
 
Brought to you from someone with no credentials.
 
Romo

DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
 
Sprycel 100mg.
PCR   02/01/2017    0.146 IS
PCR   08/07/2017    0.022 IS
Next PCR:           12/XX/2017
 

#14 SandyG353

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Posted 15 September 2017 - 06:45 PM

All test on my daughter done by a G.I. including Ultra Sounds, MRI's , colonoscopy, endoscopy show nothing. Irritable bowel syndrome has been ruled out, I have diverticulosis  and 

don't have the same pain.  She was told to eat small meals every 3 hours for other reasons, maybe due to low blood pressure. or low sugar.  In any case, my thought is that it is either from Gleevec or Siushi.

Since all tests have come out normal, Trey do you have any thoughts on this?



#15 gerry

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Posted 16 September 2017 - 05:46 PM

Sushi can cause stomach issues apparently http://www.seattleti...s-your-stomach/

The other thing can be is what she is eating when she takes her Gleevec, wondering if she takes it only when eating sushi if the rice wine vinegar in the sushi makes the stomach slightly acidic and it is possibly not a good combination with the Gleevec. I took my Gleevec at breakfast time with cereal, did get some nausea but no pain.

#16 gerry

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Posted 16 September 2017 - 06:41 PM

I am surprised that your daughter doesn't find fluid retention as another side effect, but maybe she doesn't have soy sauce with her sushi.

#17 Trey

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Posted 17 September 2017 - 08:34 AM

There is only intestine and bladder in the area described.  Could be from either.  If bowel pain, the pain described is normally a lack of proper movement of material in that area from some cause which must be determined.  And the tests may not see it.

 

Gleevec does not normally cause the issues described but may contribute in a round-about way.  Irritation in the bowel can cause narrowing and partial blockages which trap solids and gas, creating a lot of pain.  Eating into the backup makes it worse.  Since the blockage is normally partial due to narrowing, eating less can cause less pain.  This would not show up in most tests since the colon narrowing due to inflammation may be minor yet still have significant impact.  That inflammation in the bowel can be made worse by Gleevec even though not originally the cause. 

 

She should try an enema when the pain is bad and see if that helps.  If it does, the bowel narrowing from inflammation could be the problem.  Then she can get someone to try to find the source of the narrowing and inflammation.  Diverticulosis leading to diverticulitis is one possibility, but there are others so the source of the problem must be discovered. 



#18 SandyG353

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Posted 17 September 2017 - 04:13 PM

Trey, thanks for the feedback. I will give her the information.  She did say that at times she is constipated so it could be that she has blockage.






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