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Zevalin

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

Hi to everyone,
Hope this finds all of you well. My PET scan yesterday showed a complete remission. What a blessed relief. I am so thankful. However I now find myself needing to make a big decision as to ongoing treatment that I was not prepared for. I thought I would be having Rituxan every three months and was prepared for that. Now I am being offered Zevalin and need to decide which one to do. I have had Rituxan and know what to expect. Zevalin seems to be far superior but involves a lot. Does anyone want to share their knowledge and experience with me. It would be greatly appreciated. My MD wants to hear from me in a week or so and do treatment within a month. Thank you for your help.
Mary

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Hi merrywinner,
I started my treatment with rituxan, followed by zevalin and followed up with rituxan as a maintenance therapy regimen, given every two months. I have been N.E.D.(no evidence of disease), since a month and a half from recieving zevalin(June'08). See my blog here at my "about me" page for a more detailed story. My thoughts are, if you are currently in remission from the rituxan, stick with that as long as it keeps you clean, then go with zevalin. It's your call! Why does your Dr. want to give you zevalin if the rituxan put you in remission? Does he not expect it to work for a long?
Good luck and stay strong and positive.†

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

Thanks for your response. As I understand it in addition to Zevalins success with relapses they are now using it in patients that are in remission to extend that response. He also said they are coming dangerously close to being able to use the "c" word with regard to Zevalin. He said when the lymphoma returns and bone marrow is involved they may not be able to use it or would have to use very aggressive chemo to clear it. At diagnosis I had 50% bone marrow involvement. He would like to have me skip that step and feels Zevalin would put me in a much higher percentage of extended progression free survival. Additionally I did a clinical trial prior to needing the R CHOP that used Rituxan and Ontak an acheived a 90% remission but the node in my neck started growing in 6 months so he feels the Rituxan may not be holding as well as they hoped. So with all of that info it appears to be a no brainer but am apprehensive and wonder how well people who have had this tolerated it. Sorry to be so long-winded and thanks for your patience and time.

Mary

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

You are welcome. I have been a strong advocate for zevalin and have always had the belief that I will be the first to claim that "c" word with regard to zevalin. I hope and pray that a cure for ALL cancers be found some day soon. I hope you find your answers to help in your decision.

Don

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

Was the Zevalin very difficult for you?

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Not at all. I have never had a day that I even felt bad let alone an illness. Thats' what is so strange about the whole ordeal. For being dx stage 4 and all I had was enlarged nodes with 15% BMI, I feel very blessed because I have never felt anything from the cancer or the treatment. Were you able to find my story? It can also be seen here>>> http://dondealshow.blogspot.com

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

I appreciate your time in replying to my posts. I did read your story and found it very helpful and encouraging. There's nothing like chatting with someone who has been through the same things as yourself. I know I am dreading another BMB because there were problems with my first one. But maybe it will be better this time and hopefully be clear. I think I knew what my decision would be, I just had to get comfortable with it. I will be calling Mayo Clinic today to let them know I want the Zevalin. Your willingness to share your information and spend the time to do it is admirable. God bless and thanks again.
Respectfully, Mary

betsyde
Posts: 10
Joined: Jan 2010

Hi Mary,

I had Zevalin in September 2002. Was first diagnosed in January 2002 and was refractory to CVP and then to R-CHOP. Fortunately, Zevalin had become available and it rescued me when all else failed. I've been healthy and happy since! It was a breeze to take, especially following all the complications I had with chemo. Today, in fact, marks exactly 7 years, 6 months post treatment!

As to your question about using it following chemo, I'm sure your doctor has told you that Zevalin was recently approved as "consolidation" therapy, meaning it's given after chemo to "mop up" anything that might be left.

I have a whole section about RIT on my website, including "myths and facts." It's been vetted and will probably answer most of your questions, or at least help you formulate questions for your doctor so that he can help you make the decision that's best for you.
My website is http://www.lymphomabook.com. You'll see at the top a section on RIT....

Hope this helps. Good luck and keep us posted.

Betsy

PS. Don - where are fishing? I'm insanely jealous!

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

Dear Betsy,
Thank you so much for your information. In looking for any and all information over the past 3 days I ended up at your website and found it to be a Godsend and commend you for sharing your story and the wealth of information provided. I even ordered your book through Amazon because I don't have a paypal acct. I think I even emailed you but then was so happy and surprised to see you here and so appreciate your reply. My MD has taken the time to explain everything to me but at the time I was stressed and worried and under those circumstances had a hard time grasping it all. I just kept thinking..not another bone marrow biopsy!! I had problems with my first one but maybe this one will go better. I will be calling Mayo clinic today and committing to the Zevalin. As I mentioned to Don I think I knew deep down what my decision would be but needed to get comfortable with that. I've definitely been on that Roller coaster since July of 2008 and I'm scared of heights!! lol Again thank you so very much.
Mary

betsyde
Posts: 10
Joined: Jan 2010

Hi Mary,

How "funny" we had already connected through the website! I'm glad you found it useful and hope you also enjoy the book. I know all too well that these decisions we have to make are hard.

If you ever want to email me (because I don't always check this site), my email is betsy@lymphomabook.com

Again, good luck and keep us posted!

Hugs,
Betsy :))

yesyes2
Posts: 461
Joined: Jul 2009

Hi All,

Does anyone know of anyone who received Zevalin for an aggressive NHL. My lymphoma is aggressive but not DLBC and I've only heared of fNHL in connection with Zevalin. I have just finished 6 cycles of RCHOP and would love to find something to keep this beast away as I've already had one recurrance.

Thank you and good luck to all on their journey to health.
Leslie

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

Hi Betsyde,
Finished reading your book last week and loved it. What a wonderful gift you gave to people in need. Thank you. I had my bone marrow biopsy last week and that came back clear,no small feat since I had 50% involvement at diagnoses. Next up Rituxan and the tracer dose of Zevalin plus scans on Tuesday 4-6. I am so scared. I don't know why exactly. I guess I worry about the extent of the effect on the blood counts. I return on Fri. 4-9 for additional scanning and then would have the full dose on Tues. 4-13 (yep we had to throw a 13 in there). Any tips or reassurance? Thanks and I hope this finds you well. Mary

betsyde
Posts: 10
Joined: Jan 2010

Hi Mary,

Sorry this is late - I don't often check this site. Thanks for your feedback on the book - I'm glad you enjoyed it. But MORE importantly, how are you?

I know it's all over now, but as for counts, yes, they drop. But anybody who has had chemo also knows that counts drop between each treatment, so rather than dropping 6 or 8 times as they do with chemo, they drop once with RIT. I can't remember exactly how long it took mine to come up, but I think it was 6 to 8 weeks (don't quote me though!). For me, there was a certain amount of reassurance that the drop was expected and that the counts would rise - so there was no surprise.

Please let me know how you're doing!

Hugs,
Betsy :)

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

Thanks Betsy. I know that you know how much the support means. Yes it is over and for that alone I feel grateful. I had my first blood work check on Tuesday and all was good with that so far. The only thing I really feel is very tired. I could sleep 26 hours a day!! Hopefully that is somewhat normal. They have prepared me for the drop but also felt I may do well because I have no active tumors and my blood work was good at the start. But as you said it is expected so I will not be surprised. But all in all so far so good. I just hope it works. I'll see my MD again in May, I guess for a follow up. Thanks so much for your support and concern. Continued good health....Mary

beatlelvr79
Posts: 1
Joined: Dec 2009

Hi Mary,

I am also deciding about zevalin...i just had my 5th R-CVP first line treatment for fnhl that was diagnosed 11/09. My Dr. had said he planned to do the Ritux Maint but after i read Betsy's book and was at a L&L townhall meetings and one of the Drs suggested zevalin after my chemo, i asked my dr. about that option and we are considering it. My bmb involvment at diagnosis was 20-30 percent, and my Pet/ct scans last week showed a 98-99% response to chemo with only one node lit up that has halved in size. I have one more chemo to go and if my bone marrow is less than 25% my dr and me will be considering zevalin. It is a hard decision, and i am also afraid of heights & roller coasters!! I just want the longest remission possible with the fewest side effects. I am so glad i am responding to the chemo, but i hate the way chemo makes me feel and would love to never have to experience this again.
Would love to hear more about your experiences with zevalin Mary, and anyone else out there who has been thru this. From what i have read, the scariest part is the falling counts and risk of infection.
any more info is greatly appreciated.

Denise

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

It was good to hear from you Denise. It sounds like we are both in the same boat or at the very least on the same body of water at the same time. And thank you for making me laugh. If you read the previous posts you will notice the one from BetsyDe. It was really helpful for me to check out her website. Shes been through it all and has also written a book telling of her experiences called "The Roller Coaster Chronicles". I just received it and am anxious to start reading it. I finished 6 rounds of R CHOP 7 weeks ago and now have committed to the Zevalin. I have my BMB next Wednesday and then there is a whole bunch of appts set up. I am nervous about it but from what I have been able to see, it is the way to go. I hate making all of these decisions and am scared but I am in complete remission and would like to stay there. I would encourage you to visit her site as it was a big help to me.I am worried about the blood counts too. I will keep you posted.
Mary
PS: There are others on this site that have already had the Zevalin and they too were of great help.

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

Hi Denise,
Just a quick note to see how you are and if you've made any decisions yet. I had the bone marrow biopsy done, it went well and came back completely clear. Thank God because I had 50% bone marrow involvement at the time of diagnosis. Next up I will start the Zevalin. Ooowee I am nervous!! I go on Tuesday 4-6 for Rituxan and a tracer dose of the Zevalin plus some scans then return on Friday,4-9 for additional scans and then go for the full dose on Tuesday,4-13! I have butterflies about the whole thing. I guess that's somewhat in keeping with the Easter weekend thing. Let me know how you are doing.
Mary

yesyes2
Posts: 461
Joined: Jul 2009

Hi Mary,

Please let us know how your BMB goes on Wednesday. Good thoughts that it all goes well.

Good luck,
Leslie

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

Thank you Leslie, I appreciate your good thoughts and kind words. I'm a little anxious about it but I guess that is normal. Not to sound whiny but I am tired of all the procedures, tests,fatigue and worry. I could so use a break. But on a much more positive note hopefully I'll get a break soon. Thanks again,
Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Mary I just said a prayer for you. I know this is a hard road. I pray that your test is only good news and you will have some mental relief.

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