[wrwestrick]

Whitney introduction -Ultra High Risk Aggressive Myeloma

by wrwestrick on Fri Jan 18, 2013 10:25 pm

I was diagnosed Jan 2012 at 49 yrs old. However I remember bone pain in my right humerus back in 2007, which eventually went away. Jan 2012, multiple myeloma presented with a large plasmacytoma in the right humerus which resulted in the bone breaking in 2 places and a major ortho repair.

Started with radiation on the humerus, then 8 cycles of VDR -- which worked well for about 7 cycles then i started having extramedullary plasmacytomas and moving fartheer from remission. The plan was to go to Memorial Sloan Kettering for an auto then an allo transplant. Had 2 cycles of VDT-Pace , got close enought to remission, harvested stem cells...2 months after the auto transplant -- myeloma was back stronger than before. Now I have been told by Moffitt that they will NOT do an allo on me at all. and MSKCC says if it is done, it probably won't work.

I just started carfilzomib (Kyprolis) - which is the last drug I have not tried.

Any body heard of this aggressive myeloma???

Thanks & Love - Whitney Westrick

[Natalie]

Re: Whitney introduction -Ultra High Risk Aggressive Myeloma

by Natalie on Mon Jan 21, 2013 12:47 am

Have you thought about going to Arkansas (MIRT)? My dad is preparing to go there due to a failed auto transplant. I hear they have great results with high risk, aggressive myeloma.

God Bless You,
Natalie

[BethW]

Re: Whitney introduction -Ultra High Risk Aggressive Myeloma

by BethW on Wed Jan 23, 2013 5:54 pm

So sorry to hear of your struggles. My husband seems to have a similar experience although far more dragged out. He was diagnosed in 2008 after some severe infections and a broken back. He did have a complete response to Revlimid/Dex which lasted for 3 months, cannot tolerate Velcade, and had tandem SCTs in 2011. After a yearlong remission, the myeloma is rampant with no response to Revlimid. He begins carfilzomib treatment Friday. We are also looking into an allo SCT, but I am not sure the benefits outweigh the risks. Not even sure it will work, we have our first consult in February.

I hope you find some relief. Prayers are with you!

[LibbyC]

Re: Whitney introduction -Ultra High Risk Aggressive Myeloma

by LibbyC on Wed Jan 23, 2013 11:18 pm

Hi Whitney,

I have had a bit of a journey with an aggressive chemorefractory myeloma and am now in remission. I have posted my story previously on this site and I hope you dont mind if I copy and paste.

I have had success with an allograft.

I dont know what my chromosomal mutations were/are as they never got sufficient cells to do the analysis (some of my bone marrow biopsies were dry taps). However I did have chemorefractory myeloma (vincristine, adriomycin, dexamethasone, cyclophosphamide, thalidomide, Velcade, melphalan). None of these agents put me into remission let alone stabilize the disease (and would usually stop working after 3 cycles). I had a failed auto (June 2010), the myeloma decreased by 16% and within 2 months was back to where it was prior to the transplant. I had been told in Feb 2011 that there was no more treatment and that my life expectancy was approx 18 months.

During the auto transplant I developed neutropenic enterocolitis which resulted in my heart having a hissy fit, a bit of renal failure and lung collapse and associated problems with my gastrointestinal tract. As a result of this another auto prior to an allo was out of the question. I had a mini allo as an outpatient at the Alfred Hospital, Melbourne, Australia, this involved minimal chemo and reduced intensity total body irradiation. (At this stage my paraprotein was 16 - when diagnosed it was 67). I had to stay close to the hospital but was not hospitalised for the procedure. I was tired but it was the best treatment I have had so far. I do have graft vs host disease but I can live with it.

It will be 2 years in April since I had the allo. At the moment my kidneys and liver are stable as is my GVH. There is no sign of the myeloma.

All the best,
Libby