Indolent Mantle Cell Lymphoma

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Comments

  • illead
    illead Member Posts: 884 Member
    edited January 2018 #22
    Hi Campin

    Well, some of us have been on this forum for quite a few years.  It has really slowed down though and not as many posters or ones that stick around, but we're here and most of us try to answer.  I think if it's not our area we let the ones who know more answer certain ones.  Maybe it appears I have been answering more because there seems to be a glut of MCLers lately, (don't know if that is such a good thing)Undecided.  I am so sorry for your diagnosis but like you say, there is so much out there now.  When Bill was first diagnosed in '11, there was barely anything, it was pretty bleak.  I did some research for another person with MCL in Florida and saw Dr Shah, in fact another poster here is going to him I think.  I also saw Dr. Sotomayer at Moffitt, but I am pretty sure they work as a team so you will get good care and of course if you have read my posts you know Dr. Wang is our hero.  Tell him you talked to the wife of Bill from Sacramento, We live close to there but that is how he remembers us.  Hoping the best for you and please update us if you have a chance.  BTW, you are very smart to get right on this and know you will wait until you see Dr Wang before making a final decision.  You are a good advocate for yourself, keep fighting!

    Becky

  • ginablakeslee
    ginablakeslee Member Posts: 3 Member
    edited February 2018 #23
    Becky, Bill and MCL

    Well, it is CT time for me which sends me back to MCL board-land.  (FYI original dx, 1/5/2012- R-hyper-cvad a and b x 4, BEAM, auto SCT (6/19/12) , 5 years Rituxan Manitenance. Just stopped Rituxan. When Dr asked

    ... why stop Rituxan, he said, "Because I don't think you need it anymore". I certainly hope he is right! IVIG as needed, for life. Scan is 2/26. I feel perfectly well and have for a long time.

    Becky, you take my breath away. I want you to know that you and Bill have been an amazing source of support and info for me as I have made this journey. I know I am not alone! You have helped many in crisis with information and support. Thank you!

    Hugs,

    Gina Blakeslee

    (content removed by CSN staff)

  • illead
    illead Member Posts: 884 Member
    Hey Gina

    Thank you for your kind words, I don't quite know what to say.  Most of us try to share what we know, I'm just zeroed in on MCL I guess.  I know I owe you a priv message, just too much going on.  As we talked quite awhile ago, I would like to know what the statistics are with men vs women in long term remission for MCL since it is rare for a woman to have it.  I sure hope you do well with the ct.  You have been so fortunate, I am so happy for you and my wish is that you will continue to remain in remission.  I will get a p msg off to you eventually, I am getting caught up Undecided.  Oh yes, Bill had a clear petscan, we just found out last week, he feels great again.

    Hugs back, thinking of you,

    Becky

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    illead said:

    Hey Gina

    Thank you for your kind words, I don't quite know what to say.  Most of us try to share what we know, I'm just zeroed in on MCL I guess.  I know I owe you a priv message, just too much going on.  As we talked quite awhile ago, I would like to know what the statistics are with men vs women in long term remission for MCL since it is rare for a woman to have it.  I sure hope you do well with the ct.  You have been so fortunate, I am so happy for you and my wish is that you will continue to remain in remission.  I will get a p msg off to you eventually, I am getting caught up Undecided.  Oh yes, Bill had a clear petscan, we just found out last week, he feels great again.

    Hugs back, thinking of you,

    Becky

    Bill

    Delighted to hear this great PET news regarding Bill, Becky.  He rates a hug also !

    max