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Monday, June 25, 2012


Sorry for the delay in updating this blog.  Last week was pretty busy, with our trip to Niagara Falls and our 25th Anniversary Party yesterday.  What a wonderful week it was!  The celebration yesterday reaffirmed everything that is important in, family, friends.  What else matters?  Special thanks to Holly and Jeff for making it such a memorable occasion.  We are still basking in the afterglow.

Here is a picture of us taken from the Maid of the Mist in front of the American Falls.  As you can see, I am starting to get my hair back.  Yay!  Some have said that it looks good short and makes me look younger.  I don't know.  I might try keeping it short for a while.  I'm just so glad to have it growing back in.  By the way, I can offer some good deals on used hats.

 On our way back from Niagara Falls, we stopped to have lunch in Buffalo with a fellow MM patient I met through my blog.  We had a delightful time comparing notes on our respective journeys.  We both like to be well-informed and take an active role in our treatments, so it was a good learning experience for me.  He has given me some good tips on areas to research further and more questions to pursue.

It is helpful to see how we  patients may have different priorities on such issues as aggressiveness of treatment, degrees of remission, side effects, quality of life, etc.  Everyone has a unique story, and there is no cookie cutter way to treat this disease.  It is helpful to keep an open mind on all of this, and it is important to keep up to date with the fast pace of research and to keep sharing stories with fellow patients.

Today marks two weeks since my misadventure with the ladder.  For the first time, my upper body has started to feel almost normal.  I can finally function without any painkillers, which is great. I have an appointment to followup with the orthopaedic surgeon on Wednesday, just to check on any collateral damage.  I'm optimistic for a full recovery from the fall.  I'm not a cat, so I know I don't have nine lives.  I don't know how many I have, but I just used up one of them, so just in case I don't have any more left, I will take care to preserve the one I have just been given.

Tomorrow I go into DFCI to start Cycle 2 of my consolidation thereapy.  So far, I still have no peripheral neuropathy (PN) issues with the Velcade, so I am cautiously optimistic that I can get through this consolidation phase without any PN problems.  I will meet with Dr. Richardson, and I plan to ask him whether he thinks my recent faint IgG Lambda M Spike is simply a "secondary MGUS" or maybe something more clinically significant.

While we were away last week, there was good news on the myeloma drug front.  An FDA advisory panel strongly recommended approving carfilzomib (Kyprolis) for patients with relapsed and refractory MM.  Here is a link to the Myeloma Beacon article:  Carflizomib FDA Advisory Committee.  Kyprolis is a proteasome inhibitor which acts in a similar way to Velcade.  Clinical trials have shown impressive results with fewer PN side effects than Velcade.  It is now expected that the FDA will approve this drug in the next month.  This is good news for all MM patients who run the risk of becoming refractory to Velcade.  (Refractory means it doesn't work anymore.)  This could be another weapon for me downstream in my MM journey when I have to deal with a relapse situation. 

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