Wally again. I'm 3 weeks into the news of a mutation so Sprycel is no longer an option. Drs. & family pushing me into a BMT, I'm resisting for many reasons. Most of all I'm a single parent of a 16 yr. old son & I'm not feeling very optimistic about my chances of survival. Also many practical issues; work, money, so on. Trying to get into a clinical trial for a new medication, 2 weeks and waiting. Counts are holding, still taking Sprycel on Drs. orders. Any advice would be appreciated.
Mutation Now-Resisting BMT-Your Thoughts??
Posted 09 May 2011 - 07:19 PM
Posted 09 May 2011 - 08:11 PM
Im so sorry sprycel isnt working for you and understand your reservations about bmt. Your story makes me so sad and I really hope there is a tki out there that will work for you. I wish I had some good advice but hopefully Treys out there to give you some - hes our go to for anything guru.
Posted 09 May 2011 - 08:19 PM
If it is the T315i mutation (or even any other mutation), then you should get into the Ponatinib clinical trial. Several here are in the trial and doing well. Since it is not an approved drug, the medication is free.
Posted 09 May 2011 - 11:10 PM
Can you share what the mutation or what they found ? Also, if you have the Cytogenetics report that would be good to see. That would help indicate the best possible approach. Like Trey said, if it's T315I which typically goes to transplant, Ponatinib has shown great response to.
Don't let them jump to transplant too quickly, I was in the same boat and doing quite well on Ponatinib now.
Posted 10 May 2011 - 09:01 AM
I'm very sorry to hear about your situation. I can understand how you must feel and I too would be resisting BMT.
Trey posted the link for the Ariad ponatinib trial; that would be my first choice if I were you.
If that is not working out, you can also look into the Deciphera Pharmaceuticals DCC-2036 trial http://clinicaltrial...how/NCT00827138
What phase of CML are you in at this point? With regard to BMT do you have a matching donor, related or unrelated?
Best of luck, I'm keeping my fingers crossed for you....
Posted 24 May 2011 - 01:14 PM
Thanks all for your response to my post. I started Ponatinib 7 days ago as a last ditch effort to avoid BMT. Best to everyone on the board!!
Posted 24 May 2011 - 01:17 PM
I'm happy to hear you got into the trial, really hoping it works out for you. Please keep us posted from time to time on how you are doing.
Best of luck......
Posted 24 May 2011 - 02:16 PM
Good luck with ponatinib! I'm one of the first patients on this drug--been on it for two years now and still chugging along! (I had the T315i mutation). I also had to fight my doctors who were pushing me for transplant, but ended up with another doctor (who runs one of the trial sites). If you have any questions, please feel free to reach out.
Take care and welcome to the cutting edge of medicine!
Posted 29 May 2011 - 07:35 AM
I was in the similiar situation a year ago. My mutation is the F317L. May 1, 2010 the doctors switched me from Sprycel to Tasigna. Went through all the pre-transplant tests. My oldest brother is a match. June 24, 2010 the doctor "paused the stem cell transplant", his words, because of the great results I acheived using Tasigna. The doctors warned me there is very little documentation about this mutation and results using Tasigna, meaning a transplant still maybe needed. It's been a year and I am doing well, my blood counts remain in the normal range, haven't gotten the last BCR/ABL results. Takes about 3 weeks and it's only been 4 days, I'll wait. I did reach a 3 log reductions. My last visit to the Mayo Clinic (March) the doctor mentioned there were other treatment options (other than transplant) now if Tasigna fails.
Good luck. Hope things work out for you as they have for me.
Posted 29 May 2011 - 09:24 AM
Some information about Ponatinib ....
Posted 29 May 2011 - 07:07 PM
Hi Wally: Glad you got into the trial. Always see what else is available before you rush into a BMT. When I was diagnosed, and there was no Gleevec, Sprycel etc. they were pushing me into a BMT immediately. I refused until I checked some things out, which was right when Gleevec was in trial. I got into the trial, and have had a very good response with the Gleevec since 2000. I am sure there are more trials and new treatments just around the corner for others who may need them. I pray you do very well with this new TKI, and please keep everyone informed. Our postings always help somebody else.
Posted 29 May 2011 - 09:40 PM
Stupid question, but why can't a person that has a mutation on Sprycel switch to Gleevac or Tas?
Posted 30 May 2011 - 07:09 AM
Not stupid and Trey has a site that tells which drugs are better for which mutations. I don't have the organizational skills he has to have that right at my fingertips.
The 2nd generation drugs attack mutations that G doesn't but neither S nor T hits them all - one or the other may be better depending on which mutation we're talking about. Of course, none of these three (G, T, or S) touch T315i.
There is nothing that says if you start on S or T and they don't work that you can't go to G, or back to G if it was working for you when you switched to the 2nd generation TKIs, perhaps just looking for a faster response.
"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>
Posted 30 May 2011 - 09:48 AM
Seems like Trey is the go to guy. YEAh! Hopefully he will reply to this. I was never on anything except Sprycel. I'm in my 4th month now and waiting on my first BM results since S was started. Does this change anything? Could I ever go to G or T? Thanks so much for your help. This forum has helped me so much. And I have alot of stupid questions. Dr.'s are always is such a big hurry to get the cattle through the shoot.
Posted 30 May 2011 - 10:13 AM
Glad to hear you are on the ponatinib, and hoping it works out well for you.
Posted 30 May 2011 - 10:24 AM
Sprycel works better against most mutations, but Tasigna may work better against a couple (G250 and possibly F317L mutations). Neither work against T315i. So the answer is not automatically one or the other.
The other two drugs are still available options, especially if you cannot tolerate Sprycel side effects over the longer term.
Posted 01 June 2011 - 12:37 PM
AND just think, if we were in the UK and dependant on NICE-- all of these other meds in future would not be allowed to us. I hope everyone has signed the petition regarding NICE in the UK!
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