News videos and articles about TFR (Treatment free remission ) in CMLTFR CML
Posted 06 November 2015 - 05:39 PM
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.
Posted 06 November 2015 - 06:34 PM
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
Posted 07 November 2015 - 01:02 PM
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
Posted 10 November 2015 - 04:24 PM
Posted 11 November 2015 - 07:16 PM
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.
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 22 November 2015 - 09:32 PM
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)
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