November: You Are Not Alone
By Marina Sampanes Peed
When people with a MPN gather, it is easy to forget that these blood cancers are rare. MPN advocates from two dozen countries describe patient experiences that are eerily similar:
- Correct diagnosis follows one or more years of signs or symptoms.
- Clinician who made diagnosis did not provide current information about the disease nor treatment options. (Some discount while others magnify the risks.)
- Delayed in receiving appropriate treatment.
- Many “Quality of Life” symptoms are not recognized and remain untreated, especially in women.
- Access to and participation in clinical trials is difficult.
- Support from the MPN patient community is highly valued.
Most hematologists rarely, if ever, encounter a patient with a MPN. Because the diseases manifest differently, experience with a few patients is not sufficient to develop expertise. If your local physician is not proactive, you may insist he/she confer with a MPN specialist regarding your care. The experts regularly consult with general practitioners and hematologists regarding management of their MPN patients.
If your local physician is not proactive, you may insist he/she confer with a MPN specialist regarding your care. The experts regularly consult with general practitioners and hematologists regarding management of their MPN patients.
The patient experience was a recurring theme in Frankfurt am Main, Germany October 27-29, 2017 when 43 patient advocates from 24 countries gathered with several clinicians at the 2nd MPN Horizons International Conference for MPN Advocates. More reports coming soon.
Here are just a few headlines:
“These diseases will eventually be called by their mutations rather than Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis.”
~ Martin H. Ellis, MD, Meir Medical Center and Tel Aviv University, Chairman of Israel MPN Working Group
“Patient Reported Outcomes are, in fact, doctor reported outcomes; not actually from the patient. There is work to be done.”
~ Sarunas Narbutus, European Patients Academy on Therapeutic Innovation (EuPATI)
“The aging of hematopoietic stem cells may play a role in the mutations, and the health of the niche where the stem cells reside is also important… There appears to be hierarchy among mutations and competition among them.”
~ Saghi Ghaffari, MD, PhD, Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai
“When someone receives a MPN diagnosis, their cognitive map lights up based on beliefs, knowledge, expectations, psycho-emotional reactions, and personality traits.”
~ Ketti Mazzocco, PhD University of Milan, Department of Oncology and Hemato-oncology; European Institute of Oncology