6 replies to this topic

[survenant]

See Treatment free remission in CML

[AllTheseYears]

Thank you for posting this.  I had gotten some information from this conference; the patient advocates had much useful information. I am into my third month of TFR, under the supervision of my hem/onc.  The withdrawal symptoms I am experiencing are intense, sometimes debilitating. However, some of the side effects I had with Gleevec are fading, such as swelling and slight brain fog. Happy for that!  I completely agree that support for those of us pioneering TFR outside of clinical trails is simply not there - and needs to be.

 

Anyone else on this site undergoing TFR outside the clinical trials?  I'd love to hear from you, replying to this post of via message.  

[gabrielle]

I have been on a Sprycel [ 50] mg. drug cessation for 5 months now. However, my Onc. rang last month to say there was a slight " glitch' and numbers had gone up slightly, 0.00.5  [ was in remission before] Had a blood test on Tuesday and she didn't ring this time and this has freaked me a bit. Appointment is in late Nov. Guess its back on the tablets. Anyway, it was good to have a break, but I am quite anxious so I think it might be better to resume. I had 2 P.E.'s and slight fluid and heart enlargement but all cleared successfully. All in all I was happy with Sprycel as I couldn't take Tasinga due to liver toxicity. I feel sorry for all of us being dealt this crappy disease , but as my G.P. said, there are much worse cancers to get. I had breast cancer in 2005, and later had radiation , in my case I often wonder if this contributed to C.M.L. It will be 4 years in December since I was diagnosed . Guess we all just have to keep on keeping on and hope that all will be o.k. Thinking of all in this wonderful site and sending blessings.x

[Gail's]

Hopefully no news from the onc is good news. Keeping my fingers crossed that's the case. Usually you hear right away if it's not good. Besides, test results may not even be back yet!

[survenant]

New article

Dasatinib Discontinuation After 1 Year Feasible in Certain Patients With CML

[ChrisC]

Nice to see that studies are producing positive results. The more we know . . .

 

In Sept. 2011, I received permission to do a personal TFR trial, after being PCRU [0.000] steadily for two years.

 

Today I am still PCRU   [and still somewhat fatigued, etc.; one year ago had my left knee replaced: so glad! Still have arthritis in neck, feet: no idea if Sprycel was a factor. Too late to care!]

 

(dx Oct. 2008, WBC 459k; one week of leukapheresis [reduced WBC to 121k]; then began Gleevec 400mg [lots of side effects], changed to Sprycel 100mg in May 2009; reached PCRU in Sept. 2009)

 

Best of the best to everyone.

 

ChrisC

[survenant]

New abstract ASH 2015

Treatment-Free Remission (TFR) Eligibility in Patients (pts) with Chronic Myeloid Leukemia in Chronic Phase (CML-CP) and Residual Disease on Long-Term Imatinib (IM) Who Switched to Second-Line Nilotinib (NIL)