You are a trooper and a survivor!
I am wishing you the very best: best quality of life, best of ease in dealing with all the challenges you are facing, best results in your quest to reduce your Gleevec dosage . . .
You might want to print out this article to present to your doctor:
Depth of molecular response factors into safe TKI withdrawal in CML
Key clinical point: Long-time TKI therapy can be stopped in chronic myeloid leukemia in deep molecular remission. The level of molecular response prior to TKI withdrawal affects molecular relapse-free survival.
Major finding: After TKI withdrawal, 49% of patients in MR4 relapsed, compared with 39% in MR4.5 and 39% in MR5.
Data source: First interim analysis from a prospective study in 200 CML patients in deep molecular remission.
Disclosures: Dr. Saussele reported honoraria and research and travel support from BMS, Novartis, and Pfizer.
MILAN - A full 61.5% of patients with chronic myeloid leukemia in deep molecular remission for more than 1 year on long-term tyrosine kinase inhibitor therapy remained alive and free of relapse 6 months after stopping their TKI in the EURO-SKI trial.
Molecular relapse-free survival at 9 months was 58% and 55% at 12 months.
The preplanned interim analysis after 200 patients allowed the trialists to discard the study's null hypothesis that molecular relapse-free survival at 6 months would be 40% or less (P less than .0001).
"With less strict inclusion and relapse criteria than the A-STIM study and other trials, stopping is safe and we can continue with the trial," Dr. Susanne Saussele said in a late-breaking abstract session at the annual meeting of the European Hematology Association.
Importantly, interim results from the EURO-SKI (European Stop TKI) study also suggest that the level of molecular response (MR) achieved prior to TKI withdrawal affects molecular relapse-free survival.
Among 197 patients with molecular laboratory results available for exact classification, 49% of patients in MR4 relapsed, compared with 39% in MR4.5 and 39% in MR5.
"In the setting of standardized molecular testing within a CML [chronic myeloid leukemia] stopping trial, it seems that molecular remission has an impact on molecular free-survival," said Dr. Saussele of University Medical Centre Mannheim, Germany.
As no statistical test was performed and this was an interim analysis, MR4.5 or MR5 cannot yet be used as a criterion to select patients to withdraw from treatment, she said in an interview.
The findings do confirm results from the recent A-STIM (According to Stop Imatinib) study showing that loss of major molecular response can be used as a practical criterion for restarting imatinib (J. Clin. Oncol. 2014;32:424-30).
Several studies including the STIM (Stop Imatinib) trial and the STOP 2G-TKI (Stop Second Generation Tyrosine Kinase Inhibitors) study have shown that imatinib (Gleevec), dasatinib (Sprycel), and nilotinib (Tasigna) can be safely withdrawn in a substantial proportion of patients with CML in deep MR.
A number of questions remain open, however, such as which molecular level has to be reached before stopping TKI therapy, the minimal duration of TKI pretreatment or MR4 before stopping, and which prognostic factors influence molecular relapse-free survival, she said.
EURO-SKI was set up to define prognostic markers to increase the rate of patients in durable deep MR after stopping TKI treatment. Other aims are to evaluate methods of molecular monitoring, quality of life, and saved treatment costs per country.
Continued... [I can't bring up the second page, it seems one has to register and I choose not to]
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!