Hi All
I've been on 800mgs Glivec since Oct 2006. It has been decided that i will now try Dasatinib ( i think thats how you spell it ). Going to hospital Tues 10th April to begin!!!!
My questions are have any of tried or been on this drug? Whats the side affects like? Can any of you give me as much info possible? Is it stronger than Glivec? Questions questions!!!
thankyou
Elaine x
Hi Elaine,
There is a website that is devoted to Sprycel (Dasatinib).
http://www.newcmldrug.com/bms_discuss/default.asp
It is a great site to get information.
The list owner is Jerry Mayfield. He has done remarkably well on Sprycel. Be sure to look at his diary. He describes his journey on the Sprycel clinical trial.
Zavie
Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca
Hi Elle,
I am in the US. I was on 800mg Gleevec for several years with suboptimal response. I did have a major cyto response but never CCR.
I switched to 100mg Sprycel (drug name)almost 1.5 years ago. At first I had more side effects than with Gleevec....body aches, nasal congestion, dry scalp, etc. Now I am better on the Sprycel than the 800mg Gleevec........and this is pretty typical.
Sprycel is supposedly 300x more potent than Gleevec.....so you get to take a much smaller dose. It binds tighter and has a second treatment pathway.
The latest information is that the 100mg dose once a day is the preferred dose. It is just as effective as the 140mg dose and it is better to take the drug all at once vs twice a day. Maybe your doctor will have a choice if you are not in some kind of drug trial? be sure to discuss that.
On the 140mg dose, there is more plural (lung) effusion, which is the more significant side effect.
Good luck,
As Zavie mentioned, take a look at Jerry's site, lots of folks on Sprycel post there.
Nancy C.
Eugene, Oregon
five year survivor
Zavi, Have have you been??? I have missed our group for a very long time and finally used Google and find this one...Lo and Behold here you are...I sent a post to the old group and had a response from Jay whose mother died about 4 years ago from CML.
I have had one setback in all these years (Jan 2002 when I began taking Gleevec). My red cells zoomed up and I was given a lower dosage of Gleevec which got things back on track...I was very tired and can't seem to get my old self back...In time...sigh.
Are you Cml oldies still suffering from puffy eyes and how is the hair??
Freeda in the USA
Hi Elaine
I have been on BMS, I was on it for approx. 8 months and for me it worked extremely well, although I am not on it any more.
The side effects are variable from person to person, the most prevalent being the retention of fluid around the lungs. Other side effects are pretty much the same as glivec.
There is no point in me listing the side effects that I had as they were a bit more unusual and it is better to go into it thinking that it will all be fine. If there are any problems with your counts then that will be picked up at your blood tests and if there are any other side effects you will notice them.
What are the reasons for you trying the BMS? How are your PCR's?
Good luck
Susan
Hiya
Thankyou all for your replies. I'm feeling a bit nervous about tomorrow as Glivec has been a big part of my life for the last 2 years and its played a big part in getting my CML under control. The reason i'm changing drugs is because my counts have stuck at just below 2% for a wee while now and Proff Holyoake at Glasgow decided that Glivec was not going to reduce it anymore. So we shall give Dasatinib a try eh!!! Fingers crossed. Thankyou all again.
Elaine x
