A Message from Rebecca
Deep breath. Here we go...
Many of you know that two weeks ago (the Wednesday before Thanksgiving), I was diagnosed with a very rare blood cancer. It's called Blastic Plasmacytoid Dendritic Cell Neoplasm (#BPDCN).
When I read the pathology report to figure out what the heck that is, it took my breath away. The cancer is an aggressive malignancy with an extremely poor prognosis. Most patients relapse quickly after achieving first remission, sometimes within weeks. BPDCN is usually chemo resistant on the second round. Drug-resistance leads to a median overall survival of ~1 year after diagnosis.
BPDCN typically arises in older men in their 60s and 70s. But cancer obviously doesn't discriminate. For better or worse, my age and gender make me an outlier for BPDCN.
Right now, the cancer is presenting in my skin and there is a small population in my bone marrow. I am otherwise asymptomatic. But this cancer is tricky and aggressive (spreads in bone marrow and to other parts of the body quickly), so we have to throw the kitchen sink at it early on.
The best chance I have at a cure is achieving remission and then undergoing an allogeneic stem cell transplant (meaning I need a donor).
To date, there has been no consensus on the best course of chemotherapy treatment for achieving remission in this cancer. After doing some research, I elected to participate in a clinical trial at Ohio State that is also being conducted at 9 other facilities in the US, including MD Anderson and Dana Farber. I spent two days at OSU earlier this week to complete testing for the trial. I'm still waiting for confirmation that I will be accepted, but my physician told me I meet all of the inclusion criteria and none of the exclusion criteria.
The trial drug is called SL 401 and it replaces a pre-transplant chemo regimen. The drug specifically targets BPDCN cells (unlike chemo which can attack all fast growing cells, healthy or not). Recent results for SL401 and achieving first remission in BPDCN look promising: https://ash.confex.com/ash/2016/webprogram/Paper93576.html
I am scheduled to be admitted at Ohio State next Wednesday the 14th for port placement and begin treatment on the 15th. I will likely go through at least two SL 401 cycles. Each cycle is 21 to 28 days long depending on how I react to the drug.
If I achieve remission, stem cell transplant (a risky procedure by all accounts) is next. This is going to be a marathon, not a sprint, so right now I'm trying my best to focus only on the remission phase. While I'm doing that, my doctors will think three steps ahead for me and begin looking for a donor through the international registry.
This news has been overwhelming, frightening, and devastating. We are moving temporarily to Columbus for at least the first half of 2017. John will work remotely, and my Ohio family will help us juggle childcare and care for me. I'm also taking an extended medical leave of absence from work. And I will be spending much more time in the hospital and less time with John and the baby.
But, we have persevered before, and we are going to give it our all again. John and I are certainly more motivated than ever to beat this thing so Caroline can grow up with (and remember) her momma in her life.
We are overcome with gratitude for the outpouring of help we've received from so many already. Right now, we are asking for your prayers, love, support, or whatever good vibes you can send our way.
Finally, I'm sharing my wish this holiday season: that you all go hug the people you love, keep the small stuff in perspective, and be thankful for your health if you have it. ❤️
