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Monthly Archives: September 2015

Home/2015/September
29 09, 2015

Snapshot frozen in time

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I'll delay the post I had planned to run today until tomorrow. I wanted to share a telling moment I experienced yesterday. Learning that insurance approved my second transplant next month, I needed to make airline reservations into the Cedar Rapids airport; it's a short 14 miles northwest of Iowa City. The weekend got away

28 09, 2015

Beware of “myeloma mirage”

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Regular readers understand that my blog isn't all about me. One of my heartfelt goals is to help all of us--from "experienced," relapsed patients, to people living with MGUS or smoldering myeloma--improve our multiple myeloma IQ's. Sometimes I worry that reading about all I'm going through might freak out newly diagnosed patients. That would be

27 09, 2015

How’s Pat doing?

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I'm feeling a lot better this weekend than I did earlier in the week. I think my body is getting used to pomalidomide. Interesting that I tolerated thalidomide better, not really feeling a thing. That is, except for scary fast progression of my peripheral neuropathy (PN) symptoms. The good news is POM doesn't seem to

26 09, 2015

New “gold standard” therapy for multiple myeloma?

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Last year at ASH, everyone was anticipating FDA approval of carfilzomib (Kyrpolis) and pomalidomide (Pomalyst). It felt a lot like it does now, expecting the first two myeloma related immunotherapies, elotuzumab and daratumumab, to be approved within the next six months. I remember several high profile myeloma specialists (the IMF's Dr. Durie and Dana-Farber's Dr.

24 09, 2015

New/updated Financial Aid books available NOW

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As promised, the updated version of my fourth book, Financial Aid for Myeloma Patients and Caregivers, is "hot off the presses," and in stock through this site and Amazon.com. Few understands how exhausting making phone calls and doing paperwork can be. It isn't fair! You're sick, and now you need to work hard in order

23 09, 2015

Update on ixazomib

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Don't sleep on ixazomib. My sources tell me to expect a flood of positive data about Takeda's oral proteasome inhibitor (MLN9708) at this year's ASH in Orlando. We should get a glimpse of things to come at the 15th International Myeloma Workshop (IMW 2015) in Rome, Italy, from September 23 to 26, 2015. Ixazomib is

13 09, 2015

Thalidomide: Worth the risk?

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Dr. Tricot and I didn't restrict our conversation to the "transplant again or not" debate. We also spent a good deal of time discussing how to handle my worrisome peripheral neuropathy (PN). As I shared last month: Peripheral neuropathy smacks me hard!   Thalidomide maintenance has sped up the progression of my PN exponentially. Fortunately,

12 09, 2015

Research Update: CTL019 T cell therapy

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Researchers at the University of Pennsylvania continue to make progress modifying a patient's own T cells to attack their myeloma. News of early success broke at ASCO this summer: CTL019 Trial results at ASCO beyond impressive! Posted on June 18 2015 by Pat Killingsworth | 1,279 views Medical Xpress ran an article about it Wednesday.