Advanced Member
Posted 12 April 2014 - 05:12 PM
Hi Pat,
I thought eye puffiness was related to fluid retention and that's why I am so conscious of my eyes now! That's a great idea about the wedge and will look for one.
I am feeling pretty good considering how I felt in the beginning and just hope my liver numbers do not increase.
Wow, the summer's coming and so are the temptations of fried clams on Cape Cod! I will definitely cheat a but.
Thanks,
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 12 April 2014 - 05:21 PM
Hi Marnie,
Thanks. I prep before each visit - with prioritized questions. The onc even looks at my notebook to read my questions! He ends every visit with a "Now, let's look at the notebook!"
Enjoy the return of Spring,
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 12 April 2014 - 05:22 PM
Elvis,
Moi aussi. My big test will be on 4/24!
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 12 April 2014 - 07:04 PM
I got mine on amazon; it's by Science of Sleep. It's relatively expensive but the foam is good quality and the first wedge lasted over 3 years and I slept on it every night with very few exceptions. I like it because it is long and wide and not so tall that you slide down which negates all benefits.
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
New Member
Posted 12 April 2014 - 07:07 PM
Hi winespritzer,
I'm currently having a go at coming off Glivec permanently, under my doc's supervision. Part way through the first six months, which is when the majority of people relapse. Showing negatives so far, next test is later this month.
Gleevec can be a bit hard on the liver, so that's why I had a go at taking a detox while off it. Not sure if you can get the brand I'm on outside of Australia. The other thing I do is drink the juice of a lemon in a glass of water, you are supposed to have it with hot water, but I can't stand the taste of it. I find it easier to drink with cold water.
Advanced Member
Posted 12 April 2014 - 07:27 PM
Hi Gerry,
Good, good luck with coming off Gleevac,
For now, I'm going to alternate the lemon with water and a cup of milk thistle!
One of my doctors told me I could have some very dark choc in moderation!
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 12 April 2014 - 07:29 PM
Thanks, Pat,
Sounds good to me and I have free shipping.
Will my 4'11" be too short for this wedge?
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 13 April 2014 - 10:22 AM
You know, it may be. I chose that particular one because I am tall (5'11") and the end of it hits my mid-hip area so I am less inclined to slide down; it may hit you closer to mid-thigh or even lower. I would check out some of the ratings and see what people say or ask the question on-line.
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Member
Posted 06 September 2014 - 11:30 AM
Hi, winespritzer,
I developed liver toxicity on Gleevec back in 2009. In May my AST/ALT was 26/23. At the end of July they were 52/88 and when I went to Mayo for my 9 month check in August they were 531/1112! I was immediately taken off Gleevec and Prilosec. The counts continued to increase up to a high of 752/1344. I felt great, an ultrasound showed my liver looked normal however, it was definitely a drug induced hepatitis. It took 8 weeks for them to return to normal and I started on Sprycel in October. Later, after it was all over, my local onc, who was very upset that he had missed it, mentioned that he didn't think I would have qualified for a liver transplant because of the CML. Sometimes, it's a good thing when doctors don't share!
Please make sure your onc keeps a close watch; anything over 100 in ALT bears watching.
Good luck!
Pat
Hi!
I am just going through a similar experience with my wife. I posted that her last liver tox panel had AST and ALT level greater than 10 the normal range! I was wondering how were your PCR levels during the months of August to October (during the period of time you stopped the drug). Also, how were your response to the drug before August? MMR? PCRu? I find it weird that even though her levels are that high, the doctor's instructions were to leave her on gleevec.
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