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Monthly Archives: March 2015

Home/2015/March
29 03, 2015

My head is spinning…

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Sorry my post is so late this weekend.  I got caught up in enjoying Saturday; going to the farmer's market with Pattie, cleaning the pool, cooking dinner and watching Wisconsin win another nail biter against Arizona to got the the NCAA Final Four in men's basketball--for the second year in a row. Yes, I've calmed

27 03, 2015

Why can’t I get my doctors to step up and help me!

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Last night I had the opportunity to interview one of the busiest stem cell transplant experts in the United States: Dr. William Bensinger from Seattle.  I try not to ask personal medical questions during my interviews.  But now is not the time to stick to shy and stick to the script! My first two questions

26 03, 2015

Stem cell transplant expert live tonight

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I'm excited about tonight's Cure Talks broadcast.  A panel of experienced patients and I will be speaking with Dr. William Bensinger, Professor of Medicine at the University of Washington, and director of the Autologous Bone Marrow Transplant Program, Seattle Cancer Care Alliance.  I believe his medical group at Hutchinson does more stem cell transplants than

25 03, 2015

Bad news from my Mayo Clinic specialist

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At the end of Saturday's presentations I shared something very personal with our group. I wrote a five part series of posts after I returned from seeing Dr. Tricot in Iowa.  To review, Dr. Tricot recommended that I immediately switch my current treatment regimen from pomalidomide and dex to Kyprolis, Cytoxan and dex.  Assuming it

24 03, 2015

Send me your Beach Party photos…

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We had patients and caregivers here from 23 different states last weekend--and speakers from as far away as California, Kansas City, Minneapolis and Boston.  I was so busy getting to know my new friends and trying to stay organized this weekend, I didn't get a chance to take enough pictures.  Hopefully some of you can

23 03, 2015

It was an amazing weekend!

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I'm exhausted!  Hosting over a hundred friends for a long three day weekend takes a lot out of a guy.  We laughed, we cried--and everyone learned a lot, listening to 14  different speakers discussing topics ranging from experimental viral therapies to the benefits of medical marijuana. Of course I couldn't have done it without the

21 03, 2015

I’ve never planned a kidnapping before!

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Last night was amazing!  Listening to Danny Parker address the role of spirituality in our lives opened so many eyes.  Dr. Chanan-Kahn's easy to follow presentation helped us all better understand how current myeloma therapies work--and the ways future therapies may help extend our lives. I was so busy greeting old friends, making new ones,

17 03, 2015

Sub-q daratumumab study announced

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Following Takeda's lead with sub-q Velcade, Genmab hopes that their new immunotherapy, daratumumab, will work sub-q, too.  I like it!  These guys aren't wasting any time.  Daratumumab isn't even FDA approved yet: Genmab to initiate Phase 1 trial of multiple myeloma therapy Immuno-Oncology News - Leanor Mateus Ferreira March 13, 2014 Biotech company Genmab A/S

16 03, 2015

Beach Party Event Schedule Set

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Pat's Myeloma Beach Party is less than one week away!  We have registrants from 22 States and Canada!  There are still 6 spots left if you'd like to be impulsive and sign-up last minute.  And there's no limit to how many can register for Crowd Care's Beach Walk fundraiser Saturday morning.  Come on down! Here

14 03, 2015

Lessons learned: My 2nd opinion in Iowa (Part Five)

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Let's wrap up this series of posts (for now).  Do I allow Dr. Tricot to hit my myeloma hard before, during and after a second stem cell transplant, or continue to follow an incremental approach that uses the least toxic treatment combinations possible?  I'm not crazy about either choice.  I believe there is a third

12 03, 2015

Time out! Is being too busy a blessing?

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Plain and simple, I'm exhausted!  We have company staying here at the house, I've come down with Pattie's cough and beach party event planning is on overdrive.  I don't have the time or energy to contemplate my disintegrating future now. I did get a chance to visit with my medical oncologist, Dr. Mathew Luke, for

11 03, 2015

Lessons learned: My 2nd opinion in Iowa (Part Three)

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My health care team is faced with a complicated dilemma.  On one hand, pomalidomide/dexamethasone therapy continues to whittle my numbers down; my M-spike has systematically dropped from 0.7 to 0.2 over a ten month period.   On the other hand, myeloma activity is steadily increasing in and around my bones.  Talk about mixed messages! Let's