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Wednesday, November 30, 2011

More on Autologous Stem Cell Transplant (ASCT)

I know I just posted yesterday, but I'm adding this today for three reasons:
  1. I need one more post in November to match the totals for August, September, and October (8);
  2. My dexamethasone from last night is starting to kick in, so I'm awake; and
  3. I actually have a couple of things to say.
Yesterday morning, I saw from Pat Killingsworth's blog (see "Helpful Links") that he was on his way to Boston to participate in a panel discussion media event at Millenium Phamaceuticals (maker of Velcade and MLN9708).  I emailed him as to whether he would be interested in attending the DFCI Dec. 17 patient symposium as a reporter.  He responded that he would be, so I brought it up with Dr. Richardson, who said fine, although the proceedings will be on DVD, which could save him a trip.  I have since put Pat in touch with the media rep for the symposium for more information.

Pat called me last night, and we had a nice, long, delightful conversation.  He plans to talk with Dr. Richardson about the patient symposium at the ASH meeting in San Diego the week beforehand.  Since the symposium may be web cast, he may choose to stay home in Florida.  That would be a lot of travel in a short time, especially when you don't feel good.

We also spent some time discussing my new options regarding ASCT.  As you may remember, he just had a transplant in July, which didn't take, and he is now on an RVD regimen to bring the MM back under control.  It was from reading some of his blog posts and his references to several articles that has made me somewhat leery of rushing into a transplant too quickly.  I expected Pat to be cautionary about this, but to my surprise, he wasn't at all.  As he pointed out, each individual situation is different, and the specter of my turning 70 in just over a year is definitely a factor to consider.  And, as he didn't have to remind me, Dr. Richardson is a top expert in the field.

I told him that I plan to do a lot of reading and soul searching on the issue over the next month or so.  He said he would like to use me as a case study on how patients reach decisions on important therapy options such as this.  It won't be easy, especially considering the rapidly evolving, incomplete, and sometimes contradictory information and advice that is out there on MM treatment options.  I could always go for a second opinion, but who would I go to, God?  I told Pat I would keep him informed of my decision-making process.

I started doing a little research today.  As you may remember from my Nov. 16 post, I did a lot of research on the abstracts being presented at the ASH  Meeting in the category "Myeloma - Therapy Excluding Transplantation".  Hmmm, well guess what?  Now I'm suddenly more interested in papers including transplantation.  There aren't as many of those, so I don't plan to create another spreadsheet (sighs of relief from the Peanut Gallery).  Unfortunately, I didn't see an abstract for this particular clinical trial at ASH.  However I did find a website devoted to this trial:

There is a link on that site to Frequently Asked Questions and a video, both of which I found quite informative.

In yesterday's post, I mentioned that Dr. Richardson was not such a big fan of the tandem ASCT option in the clinical trial he is proposing.  I came across a great YouTube video of him today discussing post-transplant treatment options.  It's fascinating and directly relates to this trial:

He explains how lenalidomide (Revlimid) has emerged as a preferred post ASCT maintenance option, even trumping tandem (dual auto) and auto followed by mini-allo transplants in its effectiveness in extending both Progression-Free Survival (PFS) and Overall Survival (OS).  He makes a rather strong argument for me to seriously consider taking part in this clinical trial.

As of now, I have an open mind on this.  I am already weighing pros and cons, based on what little I know now, but I am definitely open to opting for this clinical trial, pending further research and getting the right answers to a number of questions.  Stay tuned...

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