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Category Archive for 'Multiple Myeloma'

Current Regimen

  “We thought that we had the answers, it was the questions we had wrong.” – Bono So to bring you up to speed a little more, we are on Daratumumab (Darzalex). The seemingly more popular of the new immunotherapies that came out November 2015. When we were told we would be moving to that, I was scrambling […]

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Changes

“Science without religion is lame, religion without science is blind.” – Albert Einstein I’m not a particularly religious person, but I am a devoutly spiritual person. I guess you could put me in the category of all the weird new age stuff, although I would reject that label. I just found my way with some […]

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  “Has anyone seen my brain? It ran off flailing and screaming about being overwhelmed this morning. I’d really like it back.” – Unknown   This week I’m dog sitting nearby at someone’s home (not my usual, they usually stay at my house). Anyway, it’s a good quiet time for me to ponder all the […]

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    “Change is the only constant, whether it’s in music, culture, dance or fashion.” – Sonu Nigam     First, I’ve missed you guys, although many of us have migrated over to FB and the various groups there that offer us information, hope, and inspiration.  I’ve felt for some time, as you may recall, […]

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IMF Take Action (ICER)

Take Action: Let CMS Know that ICER Recommendations are Bad for Myeloma Patients IMF has set up a great response with talking points and necessary links for you, the patient, the family, the caregiver, the nurse, the doctor, to make your voice heard on the ICER recommendations as well as how it will specifically be […]

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ICER EPIC FAIL

“Hidden Agenda: an often duplicitously undisclosed plan or motive.” A recent “report” by a group called ICER (Institute for Clinical and Economic Review) has issued a 139 page “DRAFT” of a report attempting to evaluate Multiple Myeloma, it’s treatment protocols, drug cost comparisons and QALY (Quality-Adjusted Life Year see: Wikipedia Definition). 0

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“Success is the sum of small efforts, repeated day in and day out.” – Robert Collier Well, it’s Easter Sunday and we are at the infusion center getting the second darzalex infusion, and honestly, I couldn’t be happier about it. Two down before he leaves for his business trip tomorrow morning and a short visit […]

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“Dr. Damian Green, a myeloma expert from Seattle Cancer Care Alliance, discusses the role of transplant in myeloma and the continuous refinements to induction therapy. Dr. Green speaks about ongoing studies in myeloma, how pre-targeting radioimmunotherapy might be utilized, and explores the potential to use novel therapies prior to transplant to increase the rate of […]

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“Instruction does much, but encouragement everything.” – Johann Wolfgang von Goethe Last night Dave and I attended a MM support group holiday meeting near Spring Hill, Florida, complete with a delicious catered meal and a sponsored patient ambassador presentation. Two years ago when I came to our in-laws for the holidays I was invited to […]

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“Research is creating new knowledge.” – Neil Armstrong, Astronaut Dr. Usmani, a researching physcian at UAMS in Little Rock, Arkansas, in the Myeloma Institute did a brief overview of the retrospective comparative study he was presenting at the conference on Total Therapy 3a and 3b regarding the newly diagnosed High Risk Multiple Myeloma patients. 0

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“A piece of me goes with them.” – Lori Puente We lost another giant soul in Myelomaville last week (Hanna – Margaret’s heartfelt tribute). Some of us knew it was coming, but it still hits you hard. Every time this happens I feel sadness and meloncholy. Each time someone relapses and goes back for more […]

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“Maybe Lori will take a break from her Myeloma Holiday and chime in.” – H.O. Indeed! I would have never thought there could be such a thing as a Myeloma Holiday. Do you ever get away from it? Well, for some of us, yes. For many, sadly, no. Thankfully Dave and I fall into the […]

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Treatment Ends!

“What part soever you take upon you, play that as well as you can and make the best of it.”  ― Thomas More Dave and I are still basking in our recent check up in Arkansas, meeting with our doctor last Thursday. In a nut shell, Dave’s treatment has successfully ended. His scans, tests, labs, etc., […]

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Myeloma Cure Panel broadcast We had a very informative Cure Panel discussion on myeloma on Blogtalkradio with Dr. Parameswaran Hari as myeloma expert on 25th September at 4:30 pm EST.  The show was co-hosted by Gary Petersen and had over 40 live callers. On the panel we had Pat Killingsworth, Matt Goldsman, Keith Virgin, and Lori […]

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Andrew Schorr catches up with Dr. Bart Barlogie in Barcelona at a conference to ask the question, if emphasis is being pushed to make Myeloma a chronic disease is cure still a priority? An excellent interview that of course has some of the scientific complexities that make it difficult for the average layperson to understand, […]

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“Let no one think that flexibility and a predisposition to compromise is a sign of weakness or a sell-out.” – Paul Kagame The two things that helped me through this ordeal (and other challenges in my life) is flexibility and adjusting my point of view. Karen touched on this in her insightful comment on my last […]

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“Superman’s not brave. You can’t be brave if you’re indestructible. It’s every day people, like you and me, that are brave knowing we could easily be defeated but still continue forward.” – Unknown In my last post regarding Dave’s exercise update I mentioned that our trainer is encouraging Dave to revitalize and renew his love for […]

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“The greatest discovery of the 20th Century is that our attitude of mind determines our quality of life, not circumstances.” – William James My interview is up over at CureTalk.   0

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“…I figured I had been dealt a terrible hand and I had two choices: fight, or roll over and die. It was a pretty simple decision.” – Nick  Nick and Dave were diagnosed a few months apart and both of us independently through our research and even different thought processes decided to treat in Arkansas. […]

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“Lack of activity destroys the good condition of every human being, while movement and methodical physical exercise save it and preserve it.”  – Plato For those of you who made a wish for Dave on my behalf, thank you! 2

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