Whoa, you said vent
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
Posted 20 April 2017 - 04:38 PM
Whoa, you said vent
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
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
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!
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."
Posted 27 April 2017 - 10:36 AM
Posted 27 April 2017 - 04:44 PM
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!
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
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
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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