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Attention merrywinner;

britta
Posts: 107
Joined: Apr 2010

Hi

I was looking for that post to John giving such a good explanation of how the Zevalin works. Went back through older files, but can't locate it. Could you tell me where it is. Looking forward to hearing how your appointment goes August 27.

Britta

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

I Britta...I think this is the post you were looking for....
Love...Sue

July 8, 2010 - 9:08am
Ahhh Cobra I will try to explain
First let me say that Zevalin or any other treatment is not the only game in town. We all must believe in and then do what are Md's feel is best for our own unique situation. That being said I was offered the Zevalin therapy after completing 6 cycles of R CHOP and achieving complete remission. I had the choice of deepening or prolonging my remission by Rituxan maintenance every 3 months or the Zevalin. Very tough call for me. Both have success rates and are effective. Zevalin as I was told is showing a longer time in remission as via European Studies over the past several years and recently studies here. They feel they are close to being able to use the "cure" word with this therapy. I hope so and we shall see. There are people on here and I am sure elsewhere that are 7 or more years out with no recurrence. That is as far as they can go because it's usage began in 2002 in the US. In the beginning it was used for people who were refractory or not responding well enough or at all to standard therapies. In the last few years it's usage has been approved for post chemo patients who achieved remission. Most recently it has been approved as a first line treatment. A very simplified method of action, as I understand it would be as follows. The Zevalin is given immediately following a dose of Rituxan. The Rituxin acts as a guided missile bringing the Zevalin to all of the affected B cells which are then destroyed. The Zevalin thanks the Rituxin but decides that it wants to play it really safe and destroy all of the B cells and let the body start over. The precursor cells are not harmed as they have no identifying markers on them. They will now fairly rapidly become normal healthy B cells because the body is calling for B cells please. The potential for unhealthy cells growing is greatly decreased because none of the old family members were left. Again really oversimplified but that is how I understand it. It is not offered everywhere only at major cancer centers that have the ability to do it. I just happened to be in the right place at the right time or at least I surely hope so. I do NOT want to step on anyone's toes here or challenge their treatments. This is in no way meant to do that. I had pretty much planned on going with the Rituxan maintenance and then was offered a choice that was really hard to make. I pray it was the right one for me. Is it without potential side effects? Of course not, none of the options are. I was told the potential for both of my options and it ended up being a horse apiece.If this interests you there is a website that explains it and why it's not available everywhere etc. It's www.lymphomabook.com. Again everyone have faith in your choices this was just mine. Sincerely, Mary

britta
Posts: 107
Joined: Apr 2010

You guys are the best!! Thanks for looking that up Sue, I looked several times, but apparently not as good of detective as you. Mary, I just posted that today, and didn't expect an immediate response, no apology needed. I'm amazed at your being able to work already in such a demanding job. My chemo brain would keep me from doing anything where I have to think. It makes me so tired to even work on the computer, that's why I'm not on here very often.

I'm seeing a new primary doctor tomorrow (mine is retiring), I just wanted a simple explanation for him, and I wasn't sure I remembered everything. I edited your personal information out Mary and just took the basic facts. I thought it would be nice for him to understand what was going on when my counts start falling.

So grateful for this site and all the wonderful people on it. Pray for you all daily.

Britta

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Just got home from work, so sorry I didn't see this until now. Glad to hear from you Britta and hope things are going well. Hopefully the post is helpful to you and again I take "poetic license". This is the way I understand it and it's probably close enough. And thank you Sue for that great detective work in locating that post. I haven't been here as much as I would like to. Going back to work will do that. Still getting my stamina built back up and it's going OK. But I do go back on August 27Th and will have a CT scan, blood work and see my Hematologist. Oooeee, a couple of butterflies have taken up residence in my stomach and I think they are breeding in there because there's a few more each day. I will be glad when it is over. I don't like the hot seat at all. I do keep up with all of everyone's posts and wish you all the best. I will keep everyone posted. God bless each of you. Mary

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hi Mary and Britta,
Sundays are pretty low key for us, so I just looked through some of the old posts and found the one you needed Britta. I'm glad I could help.
I'm sorry you have to work Mary while building up your stamina. It's got to be terribly hard to muster up that kind of energy. Remember ladies..I'm retired and at home and not going through any treatment, so I have more time on my hands than I know what to do with! I hope I don't come across as a busy body, because truely thats not the kind of person I am. This "watchful waiting" is stressful and when I see someone needing support, or has a question I think I can help out with, I just try to help the only way I know how. I know all too well that one of these days I am going to be getting treatment and I'm going to be tired, but while I'm still in pretty good shape I find it comforting to help people in this group when ever possible. Please let me know if I get on any of your nerves. Thats the last thing I would ever want to do!! Anyways...I will be thinking good positive thoughts for you both and anxiously wait to hear your up-dates. Off to the doctors for me tommorrow also. I have a few butterflies myself Mary!
Love...Sue

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