Responses To The Informal Survey
Wow! Thanks to so many of you who have responded to the informal survey. For anyone who is new to the blog, please see the entry on October 19 for the questions - and please keep your answers coming! I'll continue to read them for the next couple of weeks and then post a summary. In the meantime, there were a few specific responses that I want to address.
A couple of readers asked what radioimmunotherapy is. Please see the posting on October 2 entitled "Mantle Cell Lymphoma." Don't let the title fool you - it's a brief description of RIT.
Another reader has asked his doctor about RIT but the doctor has not responded to the question. Instead, the doctor has recommended a bone marrow transplant. Please see my entry of June 5, "BMT versus RIT." I recently spoke to the gentlemen I wrote about in that posting. Four doctors recommended a bone marrow transplant. He asked every one of them about RIT. One told him that it was too new. RIT has been out for nearly four years and clinical trials date back 16 years. That's not new. Another told him that it would hurt his chances of being retreated. Studies have shown that patients have been successfully re-treated with RIT, chemo, stem cell and bone marrow transplants. The third doctor told him they didn't use it at their clinic and the fourth never acknowledged his question. The patient finally found an RIT expert and will take that as his next treatment, thus avoiding months of treatment and recovery and severe risks.
The point is that there are doctors who have not yet embraced radioimmunotherapy, and yet studies have shown that, for the amount of treatment time (1 week), it is the most effective treatment with the fewest side effects. On the other hand, a bone marrow transplant is lengthy, risky, and expensive, something I would not personally sign up for until I had at least spoken with a doctor who is willing to discuss radioimmunotherapy as a possible option.
On a different note, my husband and I are flying to south Florida on Wednesday to attend the radioimmunotherapy conference on Friday. We'll be gone for a week and I'll write the next two entries before I leave, but please continue to write responses to the survey and look for the summary when we return.
Betsy