Please Subscribe to get a daily link to Pat's blog via email

Subscribe!

Your privacy is important to us. We will never spam you and keep your personal data secure.

Monthly Archives: December 2015

Home/2015/December
30 12, 2015

Hotel options for April Beach Party event

Tags: |8 Comments

It's hard to believe that we're only three months away from the 3rd Annual Pat's Myeloma Beach Party. The event is a "party" in name only; there will be 15 myeloma experts on hand to address topics that last year's attendees and readers feel are most important to them. The three day event is scheduled

29 12, 2015

Key research breakthroughs at ASH

Tags: , |0 Comments

Did you see the MMRF's outline of important myeloma related news at ASH this year? Short and to the point. American Society of Hematology (ASH) Key Takeaways Earlier this month the MMRF attended the 57th Annual Meeting of the American Society of Hematology (ASH) in Orlando, Florida. In last month’s newsletter, Blake Morrison, PharmD MMRF

28 12, 2015

My Patient Power interview at ASH

Tags: , , |2 Comments

Saturday I shared a link to an interview Jenny Ahlstrom did with me the second day at ASH. Can't get enough of me unabashedly sharing my opinions about myeloma therapy options on video? Then fasten your seatbelts! CLL survivor and dear friend, Carol Preston, interviewed me at ASH for Patient Power. The link below should

26 12, 2015

Video highlights of my first few days at ASH

Tags: , , |4 Comments

Good friend and fellow myeloma survivor, Jenny Ahlstrom, is a lot better at the technical side of blogging than I am. She uses a lot of video on her site. Jenny interviewed me on Sunday at ASH. You can listen to it here: http://www.myelomacrowd.org/live-from-ash/ Now that we're past the holiday, I'm going to be going

26 12, 2015

An amazing day that exceeded unrealistic expectations

Tags: |9 Comments

Sometimes Christmas day can be a letdown. Let's face it; the media and retailers build it up so much it's hard to live the idealized version. Am I right? That said, the time I spent today with Pattie, our Island Dog and Calypso Kitties was amazing. I didn't even think about checking email or posting

23 12, 2015

Canadian patients need help getting daratumumab

Tags: , , |0 Comments

My good friend from north of the border, Nancy Shamanna, asked me to share this link to a survey for patients that have taken daratumumab (Darzalex). She's hoping a positive response might move Canadian officials to adopt the new immunotherapy sooner rather than later: Myeloma Canada seeks patient and caregiver treatment input Dear patient/caregiver, Myeloma

22 12, 2015

Hopeful news about first PD-1 inhibitor

Tags: , , , |2 Comments

Another exciting, new immunotherapy may be on the horizon: Keytruda In meetings of well informed patient activists and experts after ASH, several in the group were excited about a new class of drug called PD-1 inhibitors. Jenny Ahlstrom was practically doing back flips over it. Here's info on the first of let's hope are several

19 12, 2015

More financial aid is on the way!

Tags: , , |0 Comments

This is awesome news; another source of financial assistance for myeloma patients in need. HealthWell Foundation Launches Fund to Provide Financial Assistance to Multiple Myeloma Patients New Fund Offers Relief to Patients Struggling with Out-of-Pocket Costs for Treatment GAITHERSBURG, Md., Dec. 16, 2015 /PRNewswire/ -- The HealthWell Foundation®, an independent non-profit that provides a financial

18 12, 2015

An amazing emotional roller coaster ride

Tags: , , , |33 Comments

I promised to follow up on yesterday's amazing news. Dr. Tricot reassures me that my tests confirm there isn't any active myeloma left. Yet I didn't go into our meeting expecting such good news. Late Wednesday night I was able to take a sneak peek at my PET scan results Tuesday. I’m usually pretty good

17 12, 2015

I’M MYELOMA FREE!

Tags: , , |36 Comments

Looks like our highly toxic gamble to try a pair of salvage autologous stem cell transplants worked! I'm at the airport getting ready to board a plane to Atlanta on the way home, so no time to post details... Still, I quickly wanted to share the good news with so many that have been sympathetic

15 12, 2015

This is why I do what I do

Tags: , |8 Comments

I experience countless emotional moments as I hear from myeloma patients and caregivers from around the country and sometimes, around the world. I wanted to share an exceptionally personal one with you here today. In October, I flew up to Boston for an annual reunion of Myeloma Patient Ambassadors. I was a member of the

14 12, 2015

Back to ASH: Ninlaro and Pomalyst combo promising

Tags: , , , |0 Comments

Before I pass along important information about Takeda's new oral proteasome inhibitor, Ninlaro (ixazomib), I wanted to share an update about how I'm doing. Much better, thank you very much!  Squirting a shot of vancomycin liquid into the back of my mouth (yuck) every six hours seems to be doing the trick. Another antibiotic, Flagyl,

13 12, 2015

BMT Bondage

Tags: , |18 Comments

I'm feeling a much better today. I was in such a dark place. Feverish and saddled with abdominal pain and now nine days of diarrhea, To be wheeled from ICU up to the BMT unit was discouraging beyond words. But as so many of reminded me with love and certainty, "It will get better!" Funny

12 12, 2015

I’m tired of being sick

Tags: , |14 Comments

They moved me from the University of Iowa ICU to the 7th floor BMT Unit late last night. I'd like to say that I'm resting comfortably. Still no fun on so many levels, but I am feeling well enough to get up and get around. I did eat oatmeal for breakfast and part of a

11 12, 2015

I’m in the ICU

Tags: , , |21 Comments

I left Orlando Wednesday afternoon. Sorry that I didn't post Thursday, but I was too sick--and in too much pain to do anything but moan, groan and sleep. A was already in bad shape when I arrived in Detroit to catch my connecting flight to Iowa City for tests. Missed the tests, ended up in