Today I spent all day at Memorial Sloan Kettering Cancer Center in New York City meeting with Dr. K who is conducting a study on allogeneic (donor) stem cell transplants. In case you forgot from my previous writings, we decided to perform the autologous stem cell transplant in January. This is where I use my own cells. The allogeneic stem cell transplant is where we use a donors cells. In my post from June 8, 2013 – My Trip to Hackensack I talked about the differences between the two and how even though the allo SCT could be a potential CURE… yes CURE, there is a 15-20% chance the procedure itself could kill you. That is from something called GVHD or Graft vs Host Disease. This is when the donor cells attack your own immune system. Dr. K’s trial is to perform an allo transplant and inject the T-Cells later in the process. It allows the body to get comfortable with the donor cells and then the T-Cells, when injected, can focus on fighting Myeloma cells not healthy cells. I am probably getting that backward, upside down and sideways but I am trying to keep this in layman’s terms.
He has performed 75 of these types of transplants and only 6% of patients developed GVHD and all of those were mild and treatable. Those are pretty good odds!
He also told me a story about one patient who had this T Cell Depleted Allo Transplant and relapsed shortly afterwards (within one year) so they just injected more T Cells in him and now he is in remission for six years.
The great thing about this transplant is that – YES – it is potentially CURATIVE. It also requires no maintenance chemo like an autologous SCT does. So once I have this procedure, IF I choose to have this procedure, I will not be on chemo for the rest of my life. That being said, if I relapse this does not PRECLUDE me from trying other drugs, newer drugs that may develop over time.
He is also now reengineering the T Cells before he puts them back in which means that he gets them in a petri dish, stirs them up and engineers them to fight MY particular brand of Myeloma. Remember – everyone’s Myeloma is different. Dr. K can – in the petri dish – engineer these donor T Cells to fight MY MYELOMA! Those are some magic T Cells!
So… what are the drawbacks? Welp – it is a TOUGH procedure. One month in the hospital, three months recovery and (they said although I think it is bullshit) nine months until I am back doing physical activity like working out, skiing, golf etc. But make no mistake about this – I am not underestimating the process. It will SUCK.
So … what came out of this day of appointments? I signed a consent to allow them to start to search for a match. At MSK they do a very careful selection of potential donors. They seek to match 10 out of 10 markers. If they don’t match 10 out of 10 we will not do the procedure but the odds are very good in an international database with hundreds of thousands of potentials. Many of you asked how you can donate. I will first say that if you donate your stem cells can not be directly given to me for my benefit. Unless you are immediate family everything is anonymous. That doesn’t mean that you can’t support the entire cause if you desire. There is a website called BETHEMATCH.ORG if you want more information on how you can save someone’s (mine?) life. Wouldn’t it be funny if you were called to Sloan Kettering to donate on the same day that I was admitted for my transplant? Hmmm…thinking about all my friends in the neighborhood and whose stem cells I would want inside me? Remember this Seinfeld episode?
As I always say, never EVER lose your sense of humor.
Now MY job is to get on a plan with Dr. J – either Carfilzomib, Pomalyst, Dex or Panobinostat, Revlimid, Dex that leads me as close to remission as I can get so I have the OPTION of this T Cell Depleted Transplant. And that is just what I want it to be – an OPTION. I want to pursue this in the hopes that it can CURE me. I want to pursue this on MY TERMS. And I want to pursue this on MY TIME FRAME. One of the things I have learned about Cancer is that it is very inconvenient. You can never really time it right. That is one of my goals. If Cancer is going to keep attacking me I will fight back but I will take control of the time. Keep coming at me Myeloma – its only a matter of time. You will LOSE.
Thank you to everyone who commented, texted, emailed and phoned over the last week. I have a great support system and feel very loved. I am grateful to all and I love you all back.