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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

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.

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,

26 06, 2015

Play the odds: What happens if your therapy doesn’t work?

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I wanted to backtrack and focus on what may be the most important factor when analyzing the state of my multiple myeloma: my dwindling number of therapy options. Yesterday I wrote: Apparently my current therapy combination of Cytoxan, carfilzomib (Kyprolis) and dex (CCd) was not as effective as Dr. Tricot had hoped.  He told me

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

2 01, 2015

Overtime win!

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The University of Wisconsin's come from behind overtime win put a punctuation mark on a perfect New Year's Day! The weather couldn't have been better.  Both bands were great, and the Auburn University fans knowledgeable and gracious after what I"m sure was a very difficult defeat to swallow. I felt great yesterday.  I'm at the

21 12, 2014

Despite genetic inroads, myeloma still unpredictable

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A reader response to yesterday's post got me thinking about examples of how unpredictable multiple myeloma can be. I think myeloma patients are often lulled into a false sense of complacency.  For most, multiple myeloma is a slow moving cancer, easily managed for years; sometimes decades.  For others, its more aggressive. Cytogenetic testing may give

6 11, 2014

Pomalidomide side effects

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My readers know that I'm currently using pomalidomide (Pomalyst).  So I get lots of questions about when its best to use it and possible side effects. Here's an excerpt from an article on OncLive that takes a look at POM from the perspective of three well known myeloma specialists, Dr. Noopur Raji, Dr Sagar Lonial

31 10, 2014

Pat’s myeloma therapy plan

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Thank God pomalidomide is working for me!  But what do we do once it's not?  Dr. Roy and I had a chance to discuss that on Monday. First the good news.  Dr. Roy's gut feeling is that POM should work well for quite some time.  And statistics back him up.  Patients that respond like I