The new owners of our old house on the river, Nancy and Shirley, have become good friends. We had them over for dinner a couple of weeks ago and we got to talking. Nancy works for Genentech as an advocate for cancer patients to help them afford the costs of their medications. She has a good friend, Jeff, who works for Celgene, who makes the Revlimid that I have been taking ever since my diagnosis with MM.
Nancy thought that I might make a good patient ambassador for Celgene, given my MM story and history. She set up a dinner meeting for all of us last night in Kennebunk, Maine at a great restaurant, "When Pigs Fly". There I met Phil and another manager from Celgene, Tina. As it turns out, Celgene doesn't have a formal patient ambassador program in place at this time, but they were both very interested in my MM story and will look into any opportunities for me to get involved to provide a patient perspective at some of their meetings. If it works out, great, but if not, I will find other ways to give back to the MM community. Whatever happens, the food was awesome and it was a wonderful evening.
I had my monthly visit to the Farber today. Fortunately, my numbers are still good (knock on wood). Since it has been a year since my last X-Ray bone scan, I had that done today. I also had two more immunizations left to be done, so I had my pneumonia shot today. I now have just one more live virus shot left to do to complete my immunization program since my stem cell transplant. I plan to get that next month, so I should be in good shape for us to head off to Peru in July.
I am nearing the end of my 3-year stint on the three-armed stem cell transplant clinical trial BMT-CTN 0702. Since Paul Richardson told me last month at the MMRF race/walk that I would be continuing maintenance therapy with Revlimid, I went online to find out what the story was. As it turns out, the Protocol 0702 that I'm on runs out after 38 months following assignment to one of the 3 arms of the protocol. I'm now getting to this point. However, there is now an extension to this clinical trial that extends it until 2018. I think what has happened is that Celgene has now decided to extend providing Revlimid for free to trial participants for another 3 years. They have assigned a new protocol number for this extension. I believe the new clinical trial is Protocol BMT CTN 07LT. I presume a new consent form will be required for me to join the trial. I brought this up with my nurse, Mary, today, but she didn't know anything about it. I have a feeling I'm way ahead of them on this. I will have ample opportunity to discuss this with Paul Richardson when I meet with him next month. We'll see.
On a sad note. one of my favorite people at the Farber, nurse Muriel Gannon, is retiring. She wasn't there today, so I didn't have a chance to say goodbye to her in person. She has been a constant helpful presence for me during my entire transplant journey, so I will miss her a lot. I know the people at the Farber will miss her a lot too. Have a wonderful retirement, Muriel!