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Wednesday, August 1, 2012

MLN9708 is Not for Everyone

As you all know, I have been very fortunate to have had an amazing response to the experimental MM drug, MLN9708, during my clinical trial.  Most patients on this trial have shown similar good results.  I have previously reported that the Overall Response Rate (OR), which includes Partial Response (50% drop in M-Spike) or better, is 98%, which is excellent.

However, that's not true for everyone.  Last December, I met a fellow patient online, Michael from New York, who was following my blog.  He had just been diagnosed with MM and was considering enrolling in the MLN9708 clinical trial for newly-diagnosed patients.  He got an opinion from Dr. Ken Anderson of DFCI, who encouraged him to do it, so he signed up.  We have been keeping track of each other during the intervening months.  Unfortunately, Michael has not been one of the fortunate ones.  His M-Spike level dropped (from 4.8 to 2.8), but not enough to be considered a Partial Response, and it has now stabilized after 7 cycles on the protocol.  His oncologist suggested he switch therapies.

He emailed me last week, looking for my opinion on what to do.  I suggested that he get a second opinion and offered to email Dr. Richardson for his advice.  Dr. Richardson graciously responded immediately, and suggested that perhaps he may need Cytoxan with Velcade and dexamethasone,  and he offered to consult with him.  I forwarded this to Michael.  Since he had already met with Dr. Anderson, he got a second opinion from him, who confirmed that option.  He then met with his oncologist yesterday, who suggested the same therapy, so it seems like all are in agreement.

I have done some research on the Cytoxan, Velcade, dex therapy (known as CyBorD). This is very highly regarded for newly-diagnosed patients and is on the same par with the other standard therapy option of Velcade, Revilimid, dex (VRD), which I am now taking as a consolidation therapy.  I feel really bad that Michael's MLN9708 trial didn't work out for him, but I really hope this next option does the trick.

I feel fortunate to have made contact with some other MM patients along the way, so that we can share our stories.  It's especially nice if we can meet in person.  It was a pleasure to meet with fellow patient Steve while we were in Buffalo last month, and now it looks as if we may get to meet Michael as well.  He will be traveling to Kennebunkport in a few weeks, and we are planning to meet him and his wife for dinner there.

Last night I took my 40 mg of dex for the week, so who knows how much sleep I'll get tonight.  I usually take a nap during the day and go to bed around 10:00, but today I'm full of piss and vinegar, so who knows when I'll  decide to turn in.  Maybe I'll just sit here and add to my blog for the next hour or so, but I know that would be excruciating for you, so I'll stifle my urge.

Friday we are going to Pennsylvania for my niece, Meghan's, wedding.  I'll be seeing my 94-year-old mother for the first time since before my stem cell transplant.  Fortunately, I have some hair back, so my appearance shouldn't be too much of a shock to her.  It will be great to see my brother, Terry, and his wife, Sherry, and my sons, Jeff and Brian (with Pam and Logan), will also be there for the festivities. 

I also have some other things to blog about, such as Pat Killingsworth's recent visit to the IMF Support Group Leadership Conference in Dallas.  There he got some confirmation that the approach Dr. Richardson is taking with me to hit MM with everything we've got as hard as we can up front is a good thing, especially for people with high risk disease, such as t(4;14).  But since I promised to stifle my urge to go on forever, I'll save that for another time.  Good night!

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