Impatient Patients

The recent ASH (American Society of Hematology) meeting in Orlando focused on a host of new therapies for blood cancers and possible combinations of these new drugs that could forge paths to cures.

Leukemia, myeloma and lymphoma patients are grateful for the research and dedication from medical experts from around the globe.  But as I learned from talking to several, patients also are impatient. So they are taking action to move the research needle faster toward blood cancer cures.

David Wallace

David Wallace

David Wallace was diagnosed in 2009 with polycythemia Vera, an MPN or myloproliferative neoplasm.  He struggled to find precise, relevant information about PV, so he launched PV Reporter.  PV Reporter started as a hobby but has grown into a full-time endeavor.  David is educating thousands of patients and care partners about PV, namely that indeed it IS a cancer.  He said many patients are told PV is not a cancer, and they miss the opportunity to participate in clinical trials as well as programs to help fund peripheral needs such as transportation to and from the trial site.  David recently launched <mpncancerconnection.org> to complement PV Reporter.  David’s message:  If you have doubts about your diagnosis, find another doctor now, at a major research center if possible!

Then there is a Jenny Ahlstrom.  Jenny’s been a multiple myeloma patient since 2010, nearly two years after her 6th child was born.  Jenny founded <myelomacrowd.org> which not only educates MM patients on the latest advances, but also is raising money for research to treat high risk myeloma. Jenny’s message to patients: Toward that end, Jenny has raised more than $150,000 (!) toward a goal of 1/2 million dollars (!) to fund two game-changing projects which harness the body’s immune system to knock back the disease.  Jenny’s message to us patients:  We patients CAN and SHOULD accelerate the pace of research toward a cure.  Want to do more than wait? Go to <myelomacrowd.org> to fund the research that will save lives.

Pat Killingsworth with Carol Preston

Pat Killingsworth with Carol Preston

Pat Killingsworth shouldn’t be alive.  Pat over nine years burned through multiple myeloma therapies faster than fire burns through paper.  A very somber Pat told me at ASH 2014 that he’d reached the end of the treatment road.  And yet there he was at ASH 2015-bald, thin, wearing a mask and SMILING after not one but two autologous (using his own stem cells) transplants! Read Pat’s story at <myelomablog.com>  Pat became ill after this year’s ASH, probably too many germs to combat at the Orlando Convention Center, but then a ‘miracle.’ The transplants worked. Pat was declared myeloma-free.  Pat is the model for never giving up, never taking ‘no’ for an answer and pushing back hard against adversity through education and action.  His will to live far outran the potentially lethal ravages of multiple myeloma.

Finally, Jack Aiello.  Many of you know Jack as a 21-year multiple myeloma survivor.  Through failed therapies, transplants and more treatments, Jack beat the odds. He survived MM when most patients died from it. Jack has turned his good fortune into activism.  He constantly learns about new therapies and, through the International Multiple Myeloma Foundation, educates patients to fight their disease.  Why work so hard for others when you’ve already beaten the disease?

"When I was dx'd, I wondered if I'd be alive to see my kids graduate from high school. And now I have 4 grandkids. What could be better?"

“When I was dx’d, I wondered if I’d be alive to see my kids graduate from high school. And now I have 4 grandkids. What could be better?”

These four delicious grandkids, including the newest Aiello born this month, came into Jack’s life long after his diagnosis.  Imagine if Jack hadn’t fought through the very difficult trials of treatment?

These four stories are but a smattering among hundreds – from patients who aren’t treading water and simply hoping for a cure.  They are the activists who are partnering with researchers to make it happen.  In their and our lifetimes.

Carol Preston was diagnosed with CLL in 2006, in remission for 5 1/2 years.