Postings and comments from other mantle cell patients, their family, and their friends

A bit more often then once a week, I have received either comments or email, or regular mail, from people who have been touched by mantle cell lymphoma. It’s been fmaily or friends who’ve mostly contacted me.

I am not sure how folks have found me – possible through the link at the Lymphoma Information Network. They’ve had a link on their website to this journal for about two months. I am pretty sure it wasn’t through a goggle search. I typed in "mantle cell lymphoma" on goggle last night and I didn’t turn up in the first one hundred links. (DIGRESSION. Beware of medical information on web sites! Much of the info is out of date. Even a link on the Sloan Kettering site about mantle cell, which I followed up on yesterday, was last updated in January, 2001. My physician friend Paul Novotny warned me when I first was diagnosed and I told him I was going to look up the disease online – he said "don’t do it! A lot of the data is old and inaccurate." I took his advice and as usual he was 100% correct.)

Here’s a link to another web journal dealing with a person undergoing therapy for mantle cell. Journey Through Cancer I received a comment on my December 15th posting from one of her children, Lia, and we’ve exchanged emails. And Lia gave me permission to publicize the journal.

The journal is about her Mom, Faye, who is currently nine days post- transplant.   However she’s had an aellogenic stem cell transplant – her brother was her donor. Much trickier than what I’ll being doing, since I will simply have my own stems cells put back into me (an autologous stem cell transplant.) The goal in my transplant is to simply rejuvenate my own immune system, which will be brought low by the same chemotherapy we hope will clobber the last of my MC. The aim of Faye’s tramsplant is to creat a whole new immune system (from Faye’s younger brother). I believe the goal is for the new immune system to attack the MC. Very tricky.

So feel free to check in on Faye, and also say a few prayers for her and her family. Nine days post-transplant, and it’s looking like she’s about to turn the corner!