“Anyone who tells you that the issue of whether or not to have a bone marrow transplant is a simple decision is an individual not facing that decision.” -Dr. Ruben Mesa
Myelofibrosis is a rare and potentially deadly disease. It is one of the blood cancers arising in the bone marrow’s blood-producing environment.
In its chronic state, MF symptoms can often be controlled for a time. The only potential cure is stem cell transplantation (SCT),
Myelofibrosis carries the risk of progression and transformation to acute myeloid leukemia at which time the odds of a successful SCT outcome are reduced,
Over the past decade, great advances have been made in understanding the nature of myelofibrosis. Much still remains mysterious but knowledge of some risk factors that predict disease progression or transformation to acute myeloid leukemia are now well documented.
Several drugs have been used to allay MF symptoms. For now there is only one cure for myelofibrosis: stem cell transplantation, the replacement of diseased blood stem cells with healthy cells from a qualified donor. It is a proven procedure that, along with its promise of great reward — a life free of myelofibrosis — carries significant risk both during and after transplant.
It’s about time.
Why a stem cell transplantation timing tool for myelofibrosis patients?
For myelofibrosis patients, there are many questions about stem cell transplant, its promise and its challenges, its potential risk and reward. There are questions about matched donors, support, insurance coverage, side effects.
One overwhelming question is about timing. How long do we have before we have to make the SCT decision? Too soon and we may be risking several good years, job security and planned activities unnecessarily. Too late and we may be risking our lives. (High Risk DIPSS patients are more than four times more likely to die after stem cell transplant than Low Risk patients.)
While struggling through this decision process with family, friends, and physicians, easier options arise, a clinical trial or a course of new drugs, delaying the SCT decision. Meantime, the underlying myelofibrosis continues to progress.
There is an optimal time to start SCT simply because the odds of success soar in our favor when we start early rather than late in the game. Patients transplanted earlier in their disease have better outcomes than patients with advanced disease.
The decision to proceed to stem cell transplant is yours alone to make.
The SSTT tool can help inform the timing of your decision.
What is the SCT Spectrum Timing Tool? (SSTT)
The SSTT is a portable myelofibrosis risk calculator accessible on your computer and mobile devices. The SSTT incorporates the complete and validated measuring system proven over the past decade, the Dynamic International Prognostic Scoring System (DIPSS).
The SCT Spectrum Timing Tool (SSTT) cannot tell you when your myelofibrosis will suddenly progress or transform into acute myeloid leukemia.
What it can do is alert you to your current risk level with a clear, simple and validated signal. And provide data to you and your hematologist about median survival times.
The SCT Spectrum Timing Tool converts the results of validated prognostic DIPSS scale readings into a clear color signal indicating your current myelofibrosis risk level, median survival times for that level and relative urgency to consult a transplant team. You can use your latest Complete Blood Count report to get started. But to assure accuracy and incorporate risk factors not measured by the SSTT, it is essential to fill out and review your findings with your hematologist.
MS3T — The MPN Stem Cell Transplant Timing Taskforce
The SCT Spectrum Timing Tool was produced with the contributions and counsel of the MPN SCT Transplantation Timing Taskforce (MS3T) a volunteer group of 18 world-renowned distinguished MPN and transplant specialists, patient advocates and SCT patient survivors. The work is sponsored by the MPN Research Foundation. A listing of Members of the MS3T and their affililations can be found here.
A listing of stem cell transplantation resources and useful links is here.