As Cindy’s disease was progressing, she knew her current doctor may not be able to help her as much as she needed. She had also discovered that her condition had moved from polycythemia vera
to myelofibrosis –
a bone marrow cancer that could potentially become acute leukemia one day. Cindy’s doctor was not a specialist in MPNs, or myeloproliferative neoplasms
(cancers that start in the bone marrow,) so Cindy knew seeing a specialist would be beneficial.
Cindy decided to see Dr Michael Savona, a myeloid biologist and physician taking care of patients with chronic myeloid disease.
See how Dr Savona handles the the unpredictable nature of MF
“It was a godsend to have an MPN specialist in the area,” Cindy says.
Myelofibrosis is an incredibly rare and complex disease that manifests very differently in every person. Having the added support of an MPN specialist like Dr Savona, who is armed with the latest research available, is especially valuable for patients like Cindy whose disease has progressed to myelofibrosis.
Cindy developed a strong relationship with Dr Savona over the course of her treatment. Until her transplant this year, they had worked together for over five years.
From the start, Dr Savona was impressed by Cindy’s organization. After her diagnosis, she knew she wanted to keep everything documented in a binder. The binder helps organize her questions and her family’s questions, too, she says. She uses it to keep all documentation from her doctor visits, and she brings it to every appointment. “About 50% of the binder is my own research and 50% is information from my appointments,” she says.
“I usually read articles on the MPN Research Foundation and Leukemia and Lymphoma Society websites ... and I would have a lot of questions,” she added.
“I don't think I ever remember her forgetting her binder,” Dr Savona says.
“This is really ideal, because sometimes patients will come from another doctor and have labs that didn't make their way to me and get faxed in. She has all that. Sometimes she even makes graphs of her lab work, so I can actually see trends. That's what you really want to see from patients, when they're making a real investment in their own healthcare.”
As she considered the possibility of a bone marrow transplant (the only cure for myelofibrosis,) she also began seeing new specialists. “But Dr Savona’s office is still right down the hall,” she says, which is a comfort.