Hi
After 7 months of taking Gleevac, first 600mg, then 400mg, then 300mg. I was told today, by my onc, that Gleevac is not for me as it is now affecting my liver.
Is anyone out there on Disatinib (Sprycel), and what is your experience of taking the drug. I'd love to hear from you asap...
With thanks
Vanessa
I have read recently that this drug 'sprycel' is a new wonderdrug for CML sufferers that works where no other drug has including 'Glivec'. I am on Glivec but this new drug can give us all hope.. I hope ha ha. I really wish you all the best and if you take it that it works for you and i too am looking for more info on the drug.
Hi Vanessa,
I am in the US and have been on Sprycel for just over a year. I personally know a couple of people who had to discontinue Gleevec because of the liver toxicity problem and they are doing fine on Sprycel.
You will meet up with the most people taking Sprycel on Jerry's list
www.newcmldrug.com
left hand, click on Sprycel TALK
go to the beginning of the list to get reports from lots of people just starting Sprycel (they were all in trials) or look for posts that say just starting the drug. Also, there is Jerry's Diary from when he started Sprycel.
Also, you might want to look at some of the reports from the latest ASH conference....esp about the doseage, etc of taking Srpycel. 100mg has fewer problem side effects than 140mg....and taking it once a day is better than twice a day (split dose).
Good luck to you,
Nancy C.
Hi Kenny
I believe it's the metabolica panel test, usually taken once every 3 months,for someone who's stable on Gleevac. My onc has been doing a met panel every time I see him for a CBC though, but then I haven't been stable on Gleevac at all.
Be well
Vanessa
Hi Vanessa
Have been using dasatinib since 8th November 20006 after 5 years on Glivec, reasonswere that my results (pcr) had 'plateaued' and a new poison was suggested at Hammersmith, so after much discussion we decided to give it a try. I am aware that pcr results are vague unless the %negative is low, but the last pcr analysis has shown that we have a 11% reduction, this after about 6 weeks on a dose of 50mg daily. BMA in two weeks time is booked with a view to confirming or otherwise these results. So far side effects have not been so bad, a noticable increase in fatigue levels, can only realy manage a 14 hour day (possibly due to getting a little older !) a little more fluid retention, meaning a closer watch has to be kept on weight etc, but is easily managed so far. We do have a slight hiccup coming along in February and March in that I am due for a cateract operation at my local hospital, so we are concerned about platlets as this is a constant problem with me, may mean a few weeks off medication so that we can have enough platlets for the operation.
On the blood counts front, is that once the values adjusted themselves to a new level, they have remained the same. Hb did drop slightly (explains fatigue) but all the rest are constantly the same which is great.
I take the new drug in exactly the same way as I did with Glivec without any problems to me.
Hope that all of this is of interest to you
Keep smiling
Keith
Hi Vanessa,
I gave Gleevec a try for six months (400mg) before stopping. Problems I encountered were myelosuppression (WBC and ANC) and resistance (after a steady drop initially, my PCR shot up again at the six month mark). I have no sibling donor matches for a SCT so after some discussion and research, my CML specialist, onco and I decided to give dasatinib a try. The CML specialist believes I should still seriously consider a SCT but I'm not ready for that yet (I'm 44, married with three children - youngest is 6).
I took a break from Gleevec for 4 to 5 months, only taking .5g hydroxycarbamide to control WBC, before starting dasatinib two weeks ago. It was a nice break from Gleevec side affects.
Of course it is too early to tell, but the good news after two weeks on Sprycel is that I feel much better than when on Gleevec (other than fatigue). My one concern is that after just one week at 100mg (50mg BID), my WBC dropped from 10.9 to 5.4. I have not seen the two week WBC results yet, but I'm concerned that myelosupression will be another major side affect for me. But the studies all show myelosuppression as a common side affect so I'll let the drug take its course. I guess time will reveal all.
Good luck to you!
David
dx 1 Nov, 2005
http://cox-cml.blogspot.com
Hi Vanessa:
I have been in a clinical trial for Disatinib since November of 2005 after becoming resistant to Gleevec. My bone-marrow biopsies have shown that I have "no dectectable PCR's" since the 3rd month I was on Disatinib. That never happened for me with Gleevec. Effectively, I'm in remission. I still have to take the drug, of course, but the side-effects are minimal compared to Gleevec and I actually lost 25 lbs. without even trying. I do have to take a Neupogen shot every week to boost my neutrophil count. There are some side-effects from that. Some people don't have to take the shot, but I think a lot do. Mainly, I am able to work and function as well as most people I know who don't have cancer. I pray that you have as good an experience with it as I have.
Sincerely,
Carolyn
