Tom Faranda's Folly

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

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Tom Faranda
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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 Much of the info is out of date.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!

Comments

2 responses to “Postings and comments from other mantle cell patients, their family, and their friends”

  1. Pat Cavanaugh Avatar
    Pat Cavanaugh

    Tom,
    Glad to find your web site. I am 54 year old male with stage 4 mantle cell lymphoma. I was first diagnoised 2 years ago. I am waiting and watching. My only cancer can be found (10%) in my bone marrow. I live in suburban Chicago, IL and have a great doctor at the University of Chicago Hospitals. My doctor is the head of the lymphoma department and the transplant unit. My doctors visits/test are now six months apart. I usually get a CT scan along with blood test. I have tried to educate myself on this crtazy disease and keep up with the latest drugs and testing. I think I will have the same procedures you are presently undergoing. It will be great to follow your progress. I hope to communicate with you soon.
    P.S. Anther X alter boy.

    Reply
  2. tom faranda Avatar
    tom faranda

    Pat,
    Wow! Looks like all altar boys need to be warned about this disease!! At least ex- altar boys who are 54!!!
    Sounds like your MC, like mine, is another “indolent” version. Hopefully it will stay tht way for many years. Some lymphomas are like that – you have ’em but never need treatment. I also have CLL (chronic lymphatic leukemia) another very slow moving, indolent lymphoma. It was diagnosed at the same time as the MC, so I have a “binary” lymphoma. I believe you can have CLL – at least some versions – for decades without it affecting you.
    Anyway, good luck. I have visited Chicago once (in the mid-eighties, when my rugby team won a big tournament out there)and was told there are two seasons in Chicago. August and winter.

    Reply

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