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5 01, 2016

Stem cell transplant fallout front and center in 2016 (Part Two)

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I kicked off my 2016 posts yesterday this way: "Euphoria over a myeloma free PET scan doesn't make everything else OK. I've been struggling with post transplant side effects... Still plenty of drama to kick off 2016." Monday I wrote about how stressful insurance mix-ups can be. And I didn't even get into the financial

2 01, 2016

The power of combination therapies

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New checkpoint inhibitor studies combining the experimental drug, Keytruda, with Revlimid, are working in patients who have become refractory to Revlimid. I found this great article on Linkedin.com on Saturday. I didn't even know there was such a thing. I thought that Linkedin was a professional job networking site. Apparently, professionals in healthcare can post

1 01, 2016

Hope springs eternal in 2016

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Never a dull moment. Our end of Amelia Island lost power over the holiday. It happens a lot. Even when it isn't windy, a heavy rain can leave us without power. The unusual part this time: our electricity was off for so long. It usually sputters back on after an hour or two. I took

30 12, 2015

Hotel options for April Beach Party event

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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

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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

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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

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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

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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

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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

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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!

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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

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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!

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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