Vietnam Veteran and Primary Myelofibrosis Patient
“The goal of my considering a Clinical Trial is to hopefully hold off a future SCT because of my increasing age. My SCT Specialist has told me drugs first, which I haven’t used to this point. With grade 3 fibrosis, I’m interested for myself and fellow MF patients if we’ll benefit from this treatment”
Little was knowns about MPNs in 1991 when Tom Brennan of Clinton, Connecticut was first diagnosed with Myelodysplastic Syndrome (MDS). At the time he recalls being told he was Ok for now but if the disease progressed he’d be in trouble.
This wasn’t the news the then 44-year-old father of a young son wanted to hear. Because of his worsening symptoms (chronic fatigue, bronchitis, and shortness of breath), Tom was forced to sell a business he had recently acquired and take an early retirement. Fortunately, Tom was prudent and had purchased disability insurance, and although it wasn’t his plan to retire so soon, he had the opportunity to be a stay-at-home Dad for his then young son Patrick.
Over the years though, Tom wanted to learn as much as he could about his condition. And his curiosity paid off as it led him to answers he didn’t even know he was looking for. “Between early 2000 and 2010, I went to three MDS events in NYC, Washington DC, and Cleveland. At the Cleveland Clinic, I discussed my symptoms with one of their Dr’s, along with an attending Dr. from the Mayo Clinic. They suggested other tests to confirm what I had. Knowing what I know now, I really can’t say that it was a misdiagnosis in 1991, but rather a progression of MDS to Myelofibrosis. In the early stages, some 29 years ago, these illnesses were hard to qualify, along with having many overlap features” he says. After the conference, Tom sought the opinion of two MPN specialists and it was then confirmed (with a bone marrow biopsy) he now had Primary Myelofibrosis.
A Vietnam Veteran, Tom fears that his Primary Myelofibrosis (PMF) is a result of exposure to Agent Orange. While Tom’s been fortunate that his PMF has remained unaggressive (as it’s been almost 30 years since he was diagnosed), he has been matched with a donor should he need a transplant in the future.
Over the years Tom has been treated for anemia and is now considering a clinical trial. On his last visit to Memorial Sloan Kettering Tom’s doctor noted an increase of spleen size and felt it was time to start treatment. Tom and his doctor had discussed the use of Jakafi in the past, but he held off due to the minimal symptoms he’s had and his long term stability on the drug. This opened the discussion of the Phase 2 Clinical trial of CPI 0610 that can potentially reduce fibrosis. “The goal of my considering a Clinical Trial is to hopefully hold off a future SCT because of my increasing age. My SCT Specialist has told me drugs first, which I haven’t used to this point. With grade 3 fibrosis, I’m interested for myself and fellow MF patients if we’ll benefit from this treatment” Tom says.
Humor, nature, and time with family have also been effective therapies for Tom. “I tend to see the humor in almost everything. It must be the Irish in me. And growing up in the country my biggest joy is being in nature every season. We live close to the ocean; a morning walk and looking at the birds with my wife Diane is all I need.” And maybe a successful clinical trial will be all Tom needs as well to hold off on a future SCT.