Zevalin

yesyes2
yesyes2 Member Posts: 591
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I understand that there are currently trials going on testing Zevalin for aggressive lymphomas, DLBC. Has anyone heard anything or know anything on these trials? I know when I finished my RCHOP I really wanted to do something that would boost my chances of not relapsing with my agressive lymphoma. Last year the answer was no to Zevalin and Bexar. Soon maybe not.
Leslie

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Zevlin and Bexar
    Leslie,
    I hear about these drugs all the time but not really sure if they use them for my type of lymphoma. I have the indolent type. I mentioned it a few months ago to the onc. nurse and she said they did not use it at the hospital I go too. Maybe you would know if it is used for indolent or not. It seems I can remember Mary saying she had it and she has indolent as well, but I can not remember for sure if that was one of her treatment drugs or if just an option. John(FNHL-1-4A-5/10)
  • yesyes2
    yesyes2 Member Posts: 591
    #3
    COBRA666 said:

    Zevlin and Bexar
    Leslie,
    I hear about these drugs all the time but not really sure if they use them for my type of lymphoma. I have the indolent type. I mentioned it a few months ago to the onc. nurse and she said they did not use it at the hospital I go too. Maybe you would know if it is used for indolent or not. It seems I can remember Mary saying she had it and she has indolent as well, but I can not remember for sure if that was one of her treatment drugs or if just an option. John(FNHL-1-4A-5/10)

    fNHL
    Hi John,

    Currently Zevlin and Bexar are used pretty exclusivly for fNHL. It is usually given after chemo, once remission is obtained and the BMB returns clean. There are several CSN members who have received Zevlin with very good results. Mary is one of those people who received the treatment last year. Zevlin can increase remission for fNHL patients.

    It isn't used as often as it could be due to some Oncs not being comfortable using it, unfamiliar with it, and the high cost of the treatment. If you are interested in receiving treatment your Onc should refer you to a cancer center that does Zevlin or Bexar. If you were stage 4 I think it would benefit you to look into it. But just my opinion.

    Love the new photo. Is it from Christmas?

    Take care,
    Leslie
  • hilde451
    hilde451 Member Posts: 229 Member
    #4
    COBRA666 said:

    Zevlin and Bexar
    Leslie,
    I hear about these drugs all the time but not really sure if they use them for my type of lymphoma. I have the indolent type. I mentioned it a few months ago to the onc. nurse and she said they did not use it at the hospital I go too. Maybe you would know if it is used for indolent or not. It seems I can remember Mary saying she had it and she has indolent as well, but I can not remember for sure if that was one of her treatment drugs or if just an option. John(FNHL-1-4A-5/10)

    Zevalin
    Hi John :

    I have Non-Hodgkins Lymphoma, and it is indolent also. But mine came back within one week of 5 years in 09.
    Then it was stage 4 and had it in my bone marrow. I did 8 rounds of chemo R-Chop and then on December 23, 09 I did Zevalin.
    Did my last cat scan December 1st. And it was good. My blood work is not up to par yet but heading that way , hopefully.
    So just want to tell you that they do give it to indolent patients.
    Hilde
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    yesyes2 said:

    fNHL
    Hi John,

    Currently Zevlin and Bexar are used pretty exclusivly for fNHL. It is usually given after chemo, once remission is obtained and the BMB returns clean. There are several CSN members who have received Zevlin with very good results. Mary is one of those people who received the treatment last year. Zevlin can increase remission for fNHL patients.

    It isn't used as often as it could be due to some Oncs not being comfortable using it, unfamiliar with it, and the high cost of the treatment. If you are interested in receiving treatment your Onc should refer you to a cancer center that does Zevlin or Bexar. If you were stage 4 I think it would benefit you to look into it. But just my opinion.

    Love the new photo. Is it from Christmas?

    Take care,
    Leslie

    leslie and Hilde
    Thanks for the info.and I will ask about it when I go the next time. Makes me wonder if they are still making progress in this lYmphoma like they say they are. Yes the picture was taken at my sisters house in Md this past Xmas. Its my wife.2 sons and wives. The grandkids which are 2 boys and 1 little sweetheart. Thanks for the comment on the pic. John(FNHL-1-4A-5/10)
  • cookingirl
    cookingirl Member Posts: 183 Member
    #6
    COBRA666 said:

    Zevlin and Bexar
    Leslie,
    I hear about these drugs all the time but not really sure if they use them for my type of lymphoma. I have the indolent type. I mentioned it a few months ago to the onc. nurse and she said they did not use it at the hospital I go too. Maybe you would know if it is used for indolent or not. It seems I can remember Mary saying she had it and she has indolent as well, but I can not remember for sure if that was one of her treatment drugs or if just an option. John(FNHL-1-4A-5/10)

    Zevalin and Bexxar
    Hi - hubby and I did a month long study about RIT's (Radioimmunotherapy Drugs) last Oct. before returning to Moffitt Cancer Center. After reading The Roller Coaster Chronicles by Betsy de Parry about her obtaining a full 8 year (so far - hopefully many more) remission with Zevalin after failing CVP-R and CHOP, I was just sure this would be my next treatment. What we learned from Moffitt that day was that your tumors must be no larger than 3 cm. to receive RIT's. Since my largest is 8.5, the Dr. said I must reduce that to the smaller amount by chemo first and then they would talk to me about one of the two RIT's to continue Remission. It's my understanding that they are administered only at larger Cancer Centers, not individual local Oncologists.

    I just heard from George on my posting asking him about Zevalin which he received last October. He just posted yesterday that his scan shows full remission in three months - terrific! Am sure he'd be happy to answer any questions you have - Fran
  • 711tom
    711tom Member Posts: 44
    #7
    cookingirl said:

    Zevalin and Bexxar
    Hi - hubby and I did a month long study about RIT's (Radioimmunotherapy Drugs) last Oct. before returning to Moffitt Cancer Center. After reading The Roller Coaster Chronicles by Betsy de Parry about her obtaining a full 8 year (so far - hopefully many more) remission with Zevalin after failing CVP-R and CHOP, I was just sure this would be my next treatment. What we learned from Moffitt that day was that your tumors must be no larger than 3 cm. to receive RIT's. Since my largest is 8.5, the Dr. said I must reduce that to the smaller amount by chemo first and then they would talk to me about one of the two RIT's to continue Remission. It's my understanding that they are administered only at larger Cancer Centers, not individual local Oncologists.

    I just heard from George on my posting asking him about Zevalin which he received last October. He just posted yesterday that his scan shows full remission in three months - terrific! Am sure he'd be happy to answer any questions you have - Fran

    Yes right now I think
    Yes right now I think Zevalin and Bexxar are for FNHL only but there are trials to explore other uses. My ONC told me that there are many other trials coming using monoclonial antibodies that attach to different protiens beyond CD20 that Rituxan uses and these could also become delivery mechanisms for RIT. My ONC is in a Hospital (UVA) so I was lucky that they had a nuclear medicine dept and were able to offer Zevalin. Even with that ability, they said it was the first time they had given RIT in over a year.

    if i can answer any questions please fire away, would love to help
    George
  • cookingirl
    cookingirl Member Posts: 183 Member
    #8
    711tom said:

    Yes right now I think
    Yes right now I think Zevalin and Bexxar are for FNHL only but there are trials to explore other uses. My ONC told me that there are many other trials coming using monoclonial antibodies that attach to different protiens beyond CD20 that Rituxan uses and these could also become delivery mechanisms for RIT. My ONC is in a Hospital (UVA) so I was lucky that they had a nuclear medicine dept and were able to offer Zevalin. Even with that ability, they said it was the first time they had given RIT in over a year.

    if i can answer any questions please fire away, would love to help
    George

    Yes right now I think
    That's amazing UVA has only given you RIT and no other patients in over a year! Would be very interesting to know WHY. Please excuse my chemo brain, George. I read back through earlier (November 12, to be exact) postings between you and I about Sally's book - sorry I didn't remember we'd already discussed it.

    RIT seems like a treatment that brings the longest remission of all - far longer than Rituxan which my Oncy. has planned for me for 2 years, beginning this summer. I am still leaning towards RIT and know Moffitt in Tampa does have a nuclear medicine dept. and can give it there. Even their Head of Lymphoma didn't seem excited about it when talking with him. Because it's only two treatments, I hope it's not because of less $ involved?

    We just rented a beautiful home between Lynchburg and Charlottesville, VA today for 10 of our children and grans to join us for next Thanksgiving week! None of us have been to Charlottesville and look forward to spending a day there during our week. Fran
  • 711tom
    711tom Member Posts: 44
    #9
    cookingirl said:

    Yes right now I think
    That's amazing UVA has only given you RIT and no other patients in over a year! Would be very interesting to know WHY. Please excuse my chemo brain, George. I read back through earlier (November 12, to be exact) postings between you and I about Sally's book - sorry I didn't remember we'd already discussed it.

    RIT seems like a treatment that brings the longest remission of all - far longer than Rituxan which my Oncy. has planned for me for 2 years, beginning this summer. I am still leaning towards RIT and know Moffitt in Tampa does have a nuclear medicine dept. and can give it there. Even their Head of Lymphoma didn't seem excited about it when talking with him. Because it's only two treatments, I hope it's not because of less $ involved?

    We just rented a beautiful home between Lynchburg and Charlottesville, VA today for 10 of our children and grans to join us for next Thanksgiving week! None of us have been to Charlottesville and look forward to spending a day there during our week. Fran

    i really don't know why
    Yes that whole area is beautiful, especially in the fall. Make sure you walk around the UVA campus and Monticello, home of Thomas Jefferson, it is really interesting.

    When i asked why they did not employ more use of Zevalin in the hospital i really did not get a good answer. i hope it is not $$ either as that is so offensive. I think it is a difficult protocol in handling the radioactive material and the co-ordination it requires between, Onc, infusion center and nuclear medicine. But when you need treatment that should not be an obstacle!! i really think that if I did not push for Zevalin, they would have tried something else. I must say once we decided on the treatment they did a wonderful job of coordination. I think part of it may have come from the fact that my ONC was promoted to a very high level in the Medical School and since he kept me as a patient i got the benefit of his stature. i really felt lucky for that and the care I received was unbelievable. Take care of yourself, I think of you often and continue to pray for you.

    George
  • cookingirl
    cookingirl Member Posts: 183 Member
    #10
    711tom said:

    i really don't know why
    Yes that whole area is beautiful, especially in the fall. Make sure you walk around the UVA campus and Monticello, home of Thomas Jefferson, it is really interesting.

    When i asked why they did not employ more use of Zevalin in the hospital i really did not get a good answer. i hope it is not $$ either as that is so offensive. I think it is a difficult protocol in handling the radioactive material and the co-ordination it requires between, Onc, infusion center and nuclear medicine. But when you need treatment that should not be an obstacle!! i really think that if I did not push for Zevalin, they would have tried something else. I must say once we decided on the treatment they did a wonderful job of coordination. I think part of it may have come from the fact that my ONC was promoted to a very high level in the Medical School and since he kept me as a patient i got the benefit of his stature. i really felt lucky for that and the care I received was unbelievable. Take care of yourself, I think of you often and continue to pray for you.

    George

    Thank you so much, George,
    Thank you so much, George, for your continuing prayers - they mean so much. I am very happy you pushed for the Zevalin as I feel strongly it and Bexxar are two drugs that are so helpful for long term remission. I do know you must go to a cancer or medical center for them (UVA is one of the best - you're lucky to be there). Wish more people had found and read the book we did by Betsy - it certainly convinced me it's the way to go. It just may not be an option for me if this tumor doesn't shrink more the next 3 months than it did the first. But I did read from a few people who took it theirs didn't get to the 3cm Moffitt said it must for me in order to be a candidate. I will wait and see what May brings in the final CT or PET scan and then decide if I'm going to hold out for it. The remission just sounds like it's 3 or 4 times longer than Rituxan and that's a good thing!

    Hoping you're feeling well these days?? Fran
  • 711tom
    711tom Member Posts: 44
    #11
    cookingirl said:

    Thank you so much, George,
    Thank you so much, George, for your continuing prayers - they mean so much. I am very happy you pushed for the Zevalin as I feel strongly it and Bexxar are two drugs that are so helpful for long term remission. I do know you must go to a cancer or medical center for them (UVA is one of the best - you're lucky to be there). Wish more people had found and read the book we did by Betsy - it certainly convinced me it's the way to go. It just may not be an option for me if this tumor doesn't shrink more the next 3 months than it did the first. But I did read from a few people who took it theirs didn't get to the 3cm Moffitt said it must for me in order to be a candidate. I will wait and see what May brings in the final CT or PET scan and then decide if I'm going to hold out for it. The remission just sounds like it's 3 or 4 times longer than Rituxan and that's a good thing!

    Hoping you're feeling well these days?? Fran

    feeling good
    i feel good these days!! I agree i think that the Z or B treatment is a good alternative as i read a ton of articles prior to deciding. Take care of yourself and i will continue to pray as I am obviously a big believer in the power of prayer. Stay strong and let's touch base as we approach May, good luck and I hope things get easier!

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