Anyone experience bowel obstruction? And any thoughts of it being tki or cml related? I've had quite a few in my 6 years of cml and none prior. I'm in the hospital now because of one. And lee just say.... omg that pain!!! I was helpless. Could even call 911. I thought this was it for me. I was sitting in my car on the roadside. I had texted my wife to tell her I pulled over and was sick. Within minutes I was practically helpless.
Bowel obstruction
Started by
tazdad08
, Nov 09 2017 07:26 PM
9 replies to this topic
#1
tazdad08
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Posted 09 November 2017 - 07:26 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
thatguy
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Posted 09 November 2017 - 10:11 PM
No sir, but severe constipation had been a deal for me. Try if you haven't: a good portion of beans once a day and a heaping dose of Metamucil once a day. And I swear soda exacerbates it.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL
08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)
08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)
#3
kat73
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Posted 10 November 2017 - 11:13 AM
Oh, Tazdad - yikes! I hope they're getting on top of the pain and the obstruction and taking good care of you in the hospital. There has to be an answer to things in here somewhere - they must find it for you! Will be thinking of you and sending good vibes.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#4
tiredblood
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Posted 10 November 2017 - 09:11 PM
Bowel obstruction is serious. Glad you're where you can be evaluated and treated. Keep us posted.
#5
tazdad08
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Posted 11 November 2017 - 06:16 PM
It was Mekles diverticuli. Nothing at all to do with meds or cml. Had surgery yesterday to repair the intestin and home today. Thanks for the replies!
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
Buzzm1
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Posted 11 November 2017 - 10:53 PM
Glad they found the problem tazdad; hope your recovery goes well.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#7
ROMO
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Posted 17 November 2017 - 05:46 PM
This will sound gross.
I live in farm country as such we have a farm supply
business near by. In this business they have syringes.
They are plastic and in various sizes with measurements on the side.
The 4-H future farmer's use them to treat or raise pets and
livestock. They have no needle. They use them to feed small animal formulas,
They are cheep and work really well for constipation.
Take a warm bath get one of the bigger ones like about a 1oz size,
Fill it with water. I just use the bath. and plunge it up your derriere.
Do that a few times and then get up and go to the toilet.
You will vacate any obstruction near your butt hole.
If your problems are higher then that. I got no answers.
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
#8
Flex
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Posted 18 November 2017 - 01:44 PM
Sounds like a fun night out in the country.
#9
kat73
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Posted 19 November 2017 - 12:20 PM
tazdad - Best wishes for a full and fast recovery!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#10
Pin
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Posted 20 November 2017 - 07:24 AM
Wow, that might explain why you've had so many in the past! All the best for a speedy recovery
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
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