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Surgery, any thoughts?


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#21 TeddyB

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Posted 20 April 2017 - 04:38 PM

Whoa, you said vent :D

 

These are HARD times you are living through.  As if Gleevec weren't enough.  It's like those plagues of Job's - frogs AND locusts.  I mean, why BOTH?

 

We just need to "hang in there" (Seton joke) and we will get through it :)



#22 M.A.

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Posted 20 April 2017 - 08:07 PM

Great to see your sense of humour out there in full force again kat73! Thanks for the breakfast imagery TeddyB ;-) Seriously, good luck!


CML diagnosed April 2016

Type One Diabetes diagnosed April 1980 (age 12)

 

BCR-ABL (IS)

46.77  April 2016

3.568  July 2016  

0.076  Oct 2016

0.016  Feb 2017

0.0079  April 2017

0.014  July 2017

0.019  Sept 2017

0.011  Nov 2017

0.019  Jan 2018

 

Sprycel

100mg April 29 - September 22

75mg  September 23 - October 28

50mg October 29 2016 to present


#23 TeddyB

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Posted 21 April 2017 - 05:38 PM

Great to see your sense of humour out there in full force again kat73! Thanks for the breakfast imagery TeddyB ;-) Seriously, good luck!

 

Sorry about that :)

Thanks!



#24 TeddyB

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Posted 27 April 2017 - 04:48 AM

Rest of Fistula and seton removed by surgery yesterday :)

Paracetamol and naproxen the next 4 days.

 

The surgeon wanted me to take Lactulose Syrup (Duphalac)  for a few days to keep my stools soft, anyone knows if this will interfere with Gleevec?

 

"Each 15 mL of Duphalac contains 10 g lactulose as the active ingredient, furthermore 1.5 g or less of galactose, 0.9 g or less of lactose, 0.7 g or less of epilactose, 0.3 g or less of tagatose, and 0.1 g or less of fructose."



#25 Gail's

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Posted 27 April 2017 - 10:36 AM

Congrats on getting rid of this pesky problem, TeddyB. The duphalac contains a variety of sugars that are designed to keep your stools very loose. In other words, welcome to diarrhea land once again.
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

#26 gerry

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Posted 27 April 2017 - 04:44 PM

I wouldn't worry too much about the stool softener and Gleevec, skip the cheese with the wine while you're on it otherwise you might be defeating the purpose. :-)

#27 TeddyB

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Posted 29 April 2017 - 05:51 AM

I wouldn't worry too much about the stool softener and Gleevec, skip the cheese with the wine while you're on it otherwise you might be defeating the purpose. :-)

 

No cheese, only wine, got it! :ph34r:

 

Congrats on getting rid of this pesky problem, TeddyB. The duphalac contains a variety of sugars that are designed to keep your stools very loose. In other words, welcome to diarrhea land once again.

 

Thank you :)



#28 shweflen

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Posted 01 June 2017 - 09:05 AM

I had planned to have hip replacement surgery last fall.  The pre-op blood test is what led to my diagnosis with CML.  It has now been about 4 months since diagnosis.  I am taking 300 mg imatinib per day and my cbc results have seemed to stabilize with white blood cells, neutrophils, platelets, etc. all in the normal range at this point.  My first (only) PCR after diagnosis showed a 1 log reduction in BCR-ABL.  I have talked a few times with my oncologist and with the orthopedic surgeon about under what circumstances I could go ahead with the hip replacement but haven't gotten any specific answers.  Do any of you have any experience or thoughts on this?  I know one of the major concerns with this kind of surgery is infection so I am wondering about the effect of low-normal white blood cell counts.

I had my hip replacement surgery on May 3 and all went well.  I am up to walking 1 1/2 miles a day at this point.  I had a CBC blood test on May 26 and everything was near normal.  The hemoglobin, red blood cell count and hematocrit were a little low but not of concern at this point.  I only missed taking the imatinib on the day of surgery.


10/20/2016 BCR-ABL:ABL = 81.622

01/11/2017 BCR-ABL:ABL =   8.028

04/12/2017 BCR-ABL:ABL =   0.157

07/07/2017 BCR-ABL:ABL =   0.000

10/04/2017 BCR-ABL:ABL =   0.041

11/28/2017 BCR-ABL:ABL =   0.000

 

 


#29 kat73

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Posted 01 June 2017 - 10:06 AM

This is wonderful news!  Congratulations.  You must have had the "new" hip replacement surgery where they go in from the front (anterior).  My 88 year-old father-in-law had it done around the same time as you and is doing similarly well.  I'm astounded, really.  Keep a-going!  What a relief this must be for you, and a funny sort of closure feeling as well, I would imagine, since the initial pre-op yielded a life-changing swerve there.  Here you are, on the other side of it all, triumphant! 


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.





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