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Happy Holidays! Catching up with our myeloma friends

Home/Caregivers, Inspirational, Side effects/Happy Holidays! Catching up with our myeloma friends

Happy Holidays! Catching up with our myeloma friends

I understand that all of my reader’s don’t celebrate Christmas. After all, myeloma doesn’t respect religious or political boundries; it’s an equal opportunity dose of misery. Even so, I thought that Christmas Eve might be the perfect time to catch up on how some of our friends we’ve been following this past year are doing.

Let’s start with our old friend, Tom from Ohio:

TOMUpdate: Allo transplant patient Tom from Ohio

Posted on July 30 2015 by Pat Killingsworth | 1,166 views

Allo transplant patient Tom from Ohio: Better news!


Here’s an excerpt from an email Tom sent me shortly after I was transferred from intensive care to the BMT unit at the University of Iowa Hospital:

You may have wondered where that two year update I promised you back in November has been. (Like you) I just got out of a stay in the ICU and BMT floor Dec 1st. 

Intubated, 2 hour ambulance ride, 3 days in ICU, 5 days in BMT, full of thanks but no Thanksgiving festivities. Used up one of my 9 for sure on this last one. Long story short, pomalidomide caused my white counts to crash. I became incoherent and was diagnosed with septic shock. I don’t remember the first 3 or 4 days of my stay.

I’m telling you this so you remember that it will get better. 14 days later I’m in physical therapy and able to get upstairs and slowly around the house…

My understanding is that Tom’s myeloma is stable and his doctors are pleased. But two years post transplant and still facing complications like these. Tom, you’re one tough guy!

Things have gone more smoothly for another allo transplant recipient we’ve been following, David from Tampa:

Patient Snapshot Update: Transplant survivor David from Tampa

Posted on November 16 2015 by Pat Killingsworth | 1,107 views

With the help of some light consolidation therapy, David is myeloma free. Like Tom, David has a bright, dutiful and attentive wife and two wonderful children. Ironically enough, they’re both financial planners.

Tandem transplants are tough, but allo transplants are an entirely different animal. Tom’s rough post transplant road is an example of how difficult it can be. Transplant docs throw stats around about how 15-20% of allo patients die in the first year. These guys took a big risk by going the allo route. Knowing that they’re both doing well helps make my holiday merry. I’m hoping to see them both at next year’s Beach Party event here in Fernandina Beach the first week of April.

So how’s Mike from North Carolina doing? Mike is the one on the daratumumab (Darzalex)

Reader celebrating great response to daratumumab

Posted on October 14 2015 | 1,915 views

Mike wasn’t responding to traditional myeloma therapies. Dara has been like a miracle drug for him. He recently emailed me to let me know that, not only is dara still working, but it continues to lower his numbers:

My cancer LAB TEST RESULTS from Nov. 24th were posted online a few days ago. ALL MY NUMBERS HAVE DECLINED AGAIN!

I am in the “normal range” on two of the tests, and just above the “normal range” on the 3rd test.

I may be in REMISSION right now! All this GOOD NEWS has resulted from just 10 infusions!

I had run out of treatment options, and my cancer quickly increased. Then this brand new “Monoclonal Antibody” therapy drug named daratumumab (Darzalex) arrived just in time. The friend I have made who is also receiving daratumumab on Tuesdays was told that she is probably in REMISSION too! And neither of us feel any side-effects!

How long will daratumumab do its work? There is no way to tell because it’s “breakthrough therapy.” It has no history. We are the “guinea pigs.”

Thank you for your prayers!

Merry Christmas!

It may only bee anecdotal evidence, but how exciting that daratumumab is working so well for patients we know! Bet it’s a great holiday week at Mike’s house!

On a more somber yet hopeful note, I wrote a post about a dear friend, Sara from North Carolina, who was slowly losing her myeloma battle:

Patient Snapshot: Sara from North Carolina

Posted on July 04 2015 by Pat Killingsworth | 1,258 views

In and out of hospice several different times, an old fashioned combination of melphalan and prednisone helped her live a lot longer than Sara’s doctors figured she would.

What inspires me? Click on the link and read what I wrote about her. Sara is my inspiration. And I’m happy to say she’s still with us. Multiple bone breaks and lesions have left her unable to get around without a wheelchair. But Sara is still at home, spending time with friends and family. Knowing that helps make my Christmas special.

Before I sign off, I wanted to pass this update along. A reader contacted me, disappointed that the new source of aid I wrote about on December 19th

More financial aid is on the way!


is specifically designed to help Medicare patients. I was disappointed, too, until I thought about it. My understanding is that a vast majority of myeloma patients use Medicare. I thought the number was well over 90%, but I can’t confirm that.

Medicare patients seem to be the ones that have the most trouble paying for oral chemotherapy. Now that Takeda’s oral proteasome inhibitor, Ninlaro, has burst on the scene, this financial burden may become even worse. Seems to me HealthWell Foundation’s timing couldn’t be better.

I hope you can all find a way to enjoy the holidays, even if things are difficult for you on the myeloma financial and/or myeloma front. It isn’t always easy, is it?

Feel good and keep smiling! Pat