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