The Leukemia & Lymphoma Society - Fighting Blood Cancers
3 Replies Latest reply: Jul 17, 2010 9:39 AM by rellaann RSS

New and feeling down

DottiD Registered Users
Currently Being Moderated

Hi all,

 

I figured this was a good place to start since I don't know about any of this.  My dad (69) was just diagnosed with MCL.  It appears to be on the indolent side as he has no symptoms (they actually found he had it by accident), but is in stage 4.  He is supposed to start treatment on Tuesday.  I don't understand the dosing, he will have 3 days in hospital/4 days out, then repeat for 6 months.  I believe they are going to give him R-HCVAD and overall he is pretty healthy.  I don't know wwhat to expect or what the chances are of success with this.  I have read a few encouraging threads on this site, but each person is different.  Is he too old for a SCT? I know that gives better chances of survival.  He is very determined to kick this thing in the butt (and he has a great role model, as his father had lung cancer and was given 6 months to live, but ended up living for 9 years).  We have a trip with the whole family planned for this winter, but I am not sure if we will be able to go.  My dad insists that we are going and this gives him something to look forward to, but is he being unrealstic?  What will all this chemo do to him and will he still be the same old dad I have known and loved all these years?  I know it is a lot of questions, but it seems all I can  do is think of the bad stuff and cry...I guess I want answers and maybe just a little glimmer of hope.

  • Re: New and feeling down
    Billo Registered Users
    Currently Being Moderated

    That sounds normal for R-CVAD.  I don't know that he will feel well enough

    to go on the family trip, but even if he does, he will probably have pretty

    bad neutropenia (low absolute neutrophil count, neutrophils being a type of

    white blood cell that help cells kill and digest microorganisms that

    threaten the body).  As such, he will be VERY susceptible to infections of

    all kinds.  This is serious because when you are in that state, any

    infection can could land you in the hospital or kill you.  I know I felt

    pretty good during R-HCVAD, unlike most people, and the only thing that kept

    me from "doing something stupid" was my wife.  I don't know how old the

    people will be on the family trip, and no offense intended, but kids under

    about 12 are (as my doctor put it) "germ cesspools."  Same with pets.

     

    Stage 4 doesn't mean much with MCL, as you have it all over your body if it

    is in your blood anyway.  It's not like solid tumor cancers, where the fact

    that you have tumors above and below your diaphragm is a really bad sign.

     

    My experience with transplant places is that each one has its own

    guidelines.  How old you can be may depend on how good a match you have, in

    addition to general health issues.  I had no match, so the only choice was a

    half-match from my brother (haploidentical).  This type is considerably more

    dangerous than matched transplants (largely because of the greater danger of

    graft-vs-host disease), so there has usually been an age limit or 45 or so.

    The only reason that I could have mine done was that Seattle was beginning a

    clinical trial and had, only a couple of months before, changed the age

    limit for half-matches to 65 (I was 62).  But if any place will do a

    transplant, it is Seattle.  As one doc here in Michigan said, "Try Seattle,

    they'll transplant anyone."  And they have a good record.  See

    http://www.seattlecca.org/in-the-news-detail.cfm?InTheNewsID=56 (SCCA was

    ranked first in outcomes in a four-year study by the National Marrow Donor

    Program (NMDP) that measured one-year survival rates of patients among 122

    transplant centers in the United States).

     

    To return to my first point, I was a very impatient patient when I got the

    MCL news and was likely to run off and do things I shouldn't (my wife

    quipped that "he's a patient, but not very").  It sounds like your father is

    the same way.  You have to resist the temptation to act as if nothing has

    happened.  You can make it through this, but it is a serious business.

     

    Bill

    • Re: New and feeling down
      DottiD Registered Users
      Currently Being Moderated

      Thanks for the info.  Don't get me wrong, my dad and the whole family does take this very seriously (my mom is a nurse).  He just wants (like most people I am sure) to get on with his life.  As a bystander it is very hard to know what he is going through and I just wanted some information on what to expect as he gets his treatments.  Like I said, he is very healthy (never had a heart attack, never smoked, in fact, I have never even seen him get stitches or break a bone) so i am hopin that helps him along in the chemo process.

  • Re: New and feeling down
    rellaann Registered Users
    Currently Being Moderated

    Hi DottiD,

     

    I am copying and pasting an entry I wrote in "Newly Diagnosed . . ."  This will forward many good websites for lymphoma and MCL.

     

    Your dad should do just fine if he is in the health he is.  I know of a 70 year old man that had an auto SCT.  He said it was hard on him, but he survived and is hoping for more years ahead.

     

    Realistically, the trip in the winter may be postponed.  Each chemo cycle is harder to recovery from and by the end, your body is pretty beaten up.  I was under the silly notion I could go home (lived out of state from my treatment hospital) between cycles -  By the end of my six cycles I was thankful to have stayed close to the hospital.  Don't set your family up for disappointment if you are unable to go away, it is better to focus on recovery and plan a real big bang vacation when he is fully recovered.  We treated ourselves and family to a cruise to Alaska and it was absolutely wonderful to have health and reward after such a traumatic event.

     

    Here is the paste:

     

    I was dx'd in April '08 with MCL.   Really no outstanding symptoms, what made me see the doc were the lymph  nodes swelling on the right side of my neck.  Come to find out I had  MCL, stage IVB, indolent, 60% bone marrow involvement, lymph system, no  other organ or gut.  I consider myself fortunate.

    I had six  rounds R hyperCVAD, auto stem cell transplant.  However, I wasn't 100%  responsive so the docs threw in BEXXAR and 17 rounds radiation.  I did  everything the docs recommended and I am cancer free today.  Having  cancer, hearing the type, wanting to live - all you can do is jump in  the train and travel into the tunnel of survival.  You can do it!

    I encourage  you to become your own advocate and begin to educate yourself, the more  information and understanding you have concerning MCL and treatment the  better off you will be and you might feel a little more in control of a  very uncontrollable situation.  There are wonderful web sites, this  lls.org being one of them.

    http://www.mantlecelllymphoma.org/site/c.mwKUJbNUJrF/b.4017045/k.DF0D/Programs

    http://www.cancercare.org/pdf/booklets/ccc_mantle_cell.pdf     -    cancercare.org is a wonderful site.

    http://abstract.asco.org/AbstView_74_54727.html

    http://www.nhlcyberfamily.org

    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=MANTLECELL

    When you  are newly diagnosed, as many of us do, we go to the internet and read  whatever pops up.  Generally, the articles are old and out of date.  The  above sites are current and very informative.  I used to be scared and  unsure about my future, but now having followed along on these sites and  the articles on research that the members post, I am very encouraged  and I believe I will live a much longer life than the stats on the web  say.

    Typically,  hyper-CVAD is administered in six rounds U.S., 8 rounds Europe.   However, as I said, research is happening so fast, maybe four rounds is a  new protocol.  There is talk of a vaccine being researched, look on  ACOR (last link).  But I read, and I am just a layperson, the vaccine is  considered for untreated MCL (you) and a part of the tumor needs to be  extracted and saved.  -  Thats all I understand but I think it may be  worth while understanding what is out there and being developed.

    This link is  to a telecast that took place in June.  Listening in brought me so much  hope for those of us with MCL.  The docs discuss and explain all of the  new treatments either available or coming down the pike.

    http://www.cancercare.org/get_help/tew_details.php?tew=lymphoma_061010&ret=/get_help/tew_archive/archive_detail.php

    I've  probably overwhelmed you with information.  Hyper-CVAD is an aggressive  chemo regime.  Auto stem cell transplant is just that - a transplant.   Both are doable - the next few months will not be a walk in the park but  with determination and the will to beat this cancer, you can do it.

    Write to me  on my private email and ask me further questions if you would like.   I'd be happy to be of help.

    Cyndi


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