Has anyone used Radioimmunotherapy (RIT) for NHL?

cookingirl
cookingirl Member Posts: 183 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Found today I didn't get remission with CVP+R and headed to Moffitt Cancer Center in Tampa next week to talk about options. One thing mentioned by my Oncologist was RIT - Radioimmunotherapy drugs. Attacks only the cancer cells, given by IV for one week daily and good chance of remission if you find the right one. New to us - anyone tried it?

Comments

  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #2
    RIT
    Haven't done it yet, but my onc has talked about either Bexxar or Zevalin. The bad part in my opinion is you're radioactive for a couple weeks and basically have to go into hibernation for a couple weeks. Must have your own bathroom, use only "your" dishes, wash your dishes and laundry separate from others, stay 6 feet away from people. Other than that? I think it's relatively mild, kind of like rituxan.

    I wish you could have gotten better news, but there is HOPE.

    Take care of yourself!
    Beth
  • merrywinner
    merrywinner Member Posts: 626 Member
    #3
    Hi Fran
    So sorry that you results were not all you had hoped for,but thank goodness there are other options. RIT is now used for many situations and is showing such great results. I had RIT last April with a drug called Zevalin. In my case it was used, after I had achieved complete remission,with the goal of extending the remission out for a long time and maybe forever. It started being used in it's beginning with patients who did not respond completely or at all to the standard chemo treatments. I can share my experience with you if you would like but would be interested to see what you find out from your appointment first to make sure we're on the same page. I can tell you it was not bad at all for me. If you want info on RIT I would highly recommend a great website by a wonderful gal named Betsy DePerry and her experience with Lymphoma and ultimately RIT. It explains the treatment in detail and all of her info has been vetted by professionals. It's...www.lymphomabook.com and was a godsend to me. Let me know what you think or if I can help in any way. I can also tell you that if this is what you end up doing you are very lucky. All the best. Mary
  • merrywinner
    merrywinner Member Posts: 626 Member
    #4
    dixiegirl said:

    RIT
    Haven't done it yet, but my onc has talked about either Bexxar or Zevalin. The bad part in my opinion is you're radioactive for a couple weeks and basically have to go into hibernation for a couple weeks. Must have your own bathroom, use only "your" dishes, wash your dishes and laundry separate from others, stay 6 feet away from people. Other than that? I think it's relatively mild, kind of like rituxan.

    I wish you could have gotten better news, but there is HOPE.

    Take care of yourself!
    Beth

    Hi Beth
    If or when the time comes don't let all of that scare you. I was instructed to practice good hand washing, flush the toilet twice and use my own towels for 48 hours after treatment. I fully expected my husband to have to sleep on the couch and not to have contact with the dog etc. None of that was true for me and believe me I asked. They even said there was no risk in being around my daughters newborn twins but just to be safe I stayed away from them for awhile. I expected so many more precautions and it just wasn't the case. I remember having way more precautions when I had the radioactive iodine for my thyroid in 2003. I felt like a leper!! So I was expecting all of that. Wasn't like that at all. Mary
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    merrywinner said:

    Hi Fran
    So sorry that you results were not all you had hoped for,but thank goodness there are other options. RIT is now used for many situations and is showing such great results. I had RIT last April with a drug called Zevalin. In my case it was used, after I had achieved complete remission,with the goal of extending the remission out for a long time and maybe forever. It started being used in it's beginning with patients who did not respond completely or at all to the standard chemo treatments. I can share my experience with you if you would like but would be interested to see what you find out from your appointment first to make sure we're on the same page. I can tell you it was not bad at all for me. If you want info on RIT I would highly recommend a great website by a wonderful gal named Betsy DePerry and her experience with Lymphoma and ultimately RIT. It explains the treatment in detail and all of her info has been vetted by professionals. It's...www.lymphomabook.com and was a godsend to me. Let me know what you think or if I can help in any way. I can also tell you that if this is what you end up doing you are very lucky. All the best. Mary

    Tumor size opposed to SUV?
    Mary,
    I responded to Fran on another thread,but I am not sure if she knows the answers or not,having all that info thrown at her at once. Maybe you can answer what I have asked. What are they looking for? Tumor size or SUV. Do they work together as far as activity? It is all a little confusing with what they are checking for. Does SUV being down have anything to do with tumor size and visa versa? What is ultimate goal of treatment? John
  • merrywinner
    merrywinner Member Posts: 626 Member
    #6
    COBRA666 said:

    Tumor size opposed to SUV?
    Mary,
    I responded to Fran on another thread,but I am not sure if she knows the answers or not,having all that info thrown at her at once. Maybe you can answer what I have asked. What are they looking for? Tumor size or SUV. Do they work together as far as activity? It is all a little confusing with what they are checking for. Does SUV being down have anything to do with tumor size and visa versa? What is ultimate goal of treatment? John

    Good morning John
    I am not 100% sure of the answer. I suppose that may be because they never discussed SUV numbers with me. I think what is important is the presence of tumors and their activity period. I remember at one point being told that the tumor in my neck was nearly gone but showed no activity etc. For me their goal was complete remission with no activity anywhere and as luck would have it that's what I ended up with. For more stubborn areas I would assume the SUV number becomes more important. So in answer to one of your questions, the ultimate goal is always no tumors and no activity and they will keep on trying to achieve that. I suppose one could assume there are as many scenarios as there are patients...bigger tumor with minimal activity...smaller tumor with high activity etc. I know you have completed all of your scheduled treatments and for that I congratulate you. Now you have an upcoming scan and I know how nerve wracking that is. Always remember that no matter what the result there is a plan B if needed. Also I know a partial remission is common. At one point I had one @90%. It was then back to watch and wait for awhile. For me it wasn't very long but for others it can last years. It will all work out and I wish you all of the very best. Mary
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #7
    merrywinner said:

    Good morning John
    I am not 100% sure of the answer. I suppose that may be because they never discussed SUV numbers with me. I think what is important is the presence of tumors and their activity period. I remember at one point being told that the tumor in my neck was nearly gone but showed no activity etc. For me their goal was complete remission with no activity anywhere and as luck would have it that's what I ended up with. For more stubborn areas I would assume the SUV number becomes more important. So in answer to one of your questions, the ultimate goal is always no tumors and no activity and they will keep on trying to achieve that. I suppose one could assume there are as many scenarios as there are patients...bigger tumor with minimal activity...smaller tumor with high activity etc. I know you have completed all of your scheduled treatments and for that I congratulate you. Now you have an upcoming scan and I know how nerve wracking that is. Always remember that no matter what the result there is a plan B if needed. Also I know a partial remission is common. At one point I had one @90%. It was then back to watch and wait for awhile. For me it wasn't very long but for others it can last years. It will all work out and I wish you all of the very best. Mary

    Thank you, Mary
    I know no one has all the answers,but you have always been there to answer what you can. Always be my go to person and I thank you. John
  • merrywinner
    merrywinner Member Posts: 626 Member
    #8
    COBRA666 said:

    Thank you, Mary
    I know no one has all the answers,but you have always been there to answer what you can. Always be my go to person and I thank you. John

    I'm sticking around
    Thanks John for the kind words. Any knowledge I may possess was gained from my experiences, of which there were many. If I can share that and help just one person to be less afraid or more hopeful then I am happy. It can be a lonely place to be in and this site has always been a lifesaver for me. You are very generous with your time and sharing of info and it is a gift to us all. You stay here too!! Mary
  • betsyde
    betsyde Member Posts: 9
    #9
    RIT
    Hi, Yes, I took RIT in September 2002 after being refractory to CVP and R-CHOP. I have been healthy since. There is a wealth of information, which has been vetted by two doctors independently, about RIT on my website, which is: http://www.lymphomabook.com/ Just look for "Radioimmunotherapy" and there's quite a bit.

    Additionally, my doctor, Mark Kaminski, developed Bexxar. I am currently hosting a series of webcasts for the Lymphoma Foundation of America and will record an interview with him about RIT on 10/14. Here's the link to listen: http://www.lymphomahelp.org/audio.htm
    I'm sure that you will find it very informative.

    Hope this helps!

    Betsy
  • merrywinner
    merrywinner Member Posts: 626 Member
    #10
    betsyde said:

    RIT
    Hi, Yes, I took RIT in September 2002 after being refractory to CVP and R-CHOP. I have been healthy since. There is a wealth of information, which has been vetted by two doctors independently, about RIT on my website, which is: http://www.lymphomabook.com/ Just look for "Radioimmunotherapy" and there's quite a bit.

    Additionally, my doctor, Mark Kaminski, developed Bexxar. I am currently hosting a series of webcasts for the Lymphoma Foundation of America and will record an interview with him about RIT on 10/14. Here's the link to listen: http://www.lymphomahelp.org/audio.htm
    I'm sure that you will find it very informative.

    Hope this helps!

    Betsy

    Hi Betsy!
    And there you are just when we need you. I hope Fran logs on soon and sees the info. You have been such a help to me and it's good to hear from you. Sounds like things are going well for you and I am glad. So far OK for me too. I will certainly check out your blog and interview. Thanks again for all you have done and continue to do for this cause. RIT needs to become more readily available to all. Mary
  • cookingirl
    cookingirl Member Posts: 183 Member
    #11
    merrywinner said:

    Hi Fran
    So sorry that you results were not all you had hoped for,but thank goodness there are other options. RIT is now used for many situations and is showing such great results. I had RIT last April with a drug called Zevalin. In my case it was used, after I had achieved complete remission,with the goal of extending the remission out for a long time and maybe forever. It started being used in it's beginning with patients who did not respond completely or at all to the standard chemo treatments. I can share my experience with you if you would like but would be interested to see what you find out from your appointment first to make sure we're on the same page. I can tell you it was not bad at all for me. If you want info on RIT I would highly recommend a great website by a wonderful gal named Betsy DePerry and her experience with Lymphoma and ultimately RIT. It explains the treatment in detail and all of her info has been vetted by professionals. It's...www.lymphomabook.com and was a godsend to me. Let me know what you think or if I can help in any way. I can also tell you that if this is what you end up doing you are very lucky. All the best. Mary

    Has anyone used Radioimmunotherapy (RIT) for NHL?
    Wow - such great responses! Mary - believe it or not, I just wrote a personal email to Betsy before logging on to this site! My husband found her book several weeks ago on the website you mentioned, I ordered it and have read it twice - it will be my permanent reference book on lymphoma. VERY encouraging and I highly recommend anyone reading this post order a copy. The book was our introduction to RIT and so good to hear from two others just now who have been through it and recommend it. I am hoping and praying it will be the suggestion from Moffitt Dr.'s next Friday. As I wrote Betsy, my concern is that completing just one chemo (CVP-R) will not be enough to let me go right into Zevalin or Bexxar? Wondering how hard it is to get insurance approval for either? Thanks for all your advice and help - Fran
  • merrywinner
    merrywinner Member Posts: 626 Member
    #12
    cookingirl said:

    Has anyone used Radioimmunotherapy (RIT) for NHL?
    Wow - such great responses! Mary - believe it or not, I just wrote a personal email to Betsy before logging on to this site! My husband found her book several weeks ago on the website you mentioned, I ordered it and have read it twice - it will be my permanent reference book on lymphoma. VERY encouraging and I highly recommend anyone reading this post order a copy. The book was our introduction to RIT and so good to hear from two others just now who have been through it and recommend it. I am hoping and praying it will be the suggestion from Moffitt Dr.'s next Friday. As I wrote Betsy, my concern is that completing just one chemo (CVP-R) will not be enough to let me go right into Zevalin or Bexxar? Wondering how hard it is to get insurance approval for either? Thanks for all your advice and help - Fran

    That is quite the
    That is quite the coincidence and I'm glad to hear you have the book. I was glued to it and it was so very helpful. I too, hope they offer the RIT option to you. I don't know for sure the answer to your question about the chemo although I had only R CHOP. Insurance wise there was no problem at all for me. Mayo handled it all. Good luck to you Fran and please keep us posted. Mary
  • miss maggie
    miss maggie Member Posts: 929
    #13
    betsyde said:

    RIT
    Hi, Yes, I took RIT in September 2002 after being refractory to CVP and R-CHOP. I have been healthy since. There is a wealth of information, which has been vetted by two doctors independently, about RIT on my website, which is: http://www.lymphomabook.com/ Just look for "Radioimmunotherapy" and there's quite a bit.

    Additionally, my doctor, Mark Kaminski, developed Bexxar. I am currently hosting a series of webcasts for the Lymphoma Foundation of America and will record an interview with him about RIT on 10/14. Here's the link to listen: http://www.lymphomahelp.org/audio.htm
    I'm sure that you will find it very informative.

    Hope this helps!

    Betsy

    Dear Betsy
    I went to your website last night. I was so inspired by your story. You gave me hope thank you.

    My computer is working great, but at this time I have no speakers installed. I was wondering, your interview on oct 14, is it possible to read the text, instead of audio? I am a widow, and at this time have no one to install the speakers.

    I also ordered your book last night. I did request your autograph. I look forward to reading your book.

    God Bless you and prayers to you and all. Maggie
  • betsyde
    betsyde Member Posts: 9
    #14
    miss maggie said:

    Dear Betsy
    I went to your website last night. I was so inspired by your story. You gave me hope thank you.

    My computer is working great, but at this time I have no speakers installed. I was wondering, your interview on oct 14, is it possible to read the text, instead of audio? I am a widow, and at this time have no one to install the speakers.

    I also ordered your book last night. I did request your autograph. I look forward to reading your book.

    God Bless you and prayers to you and all. Maggie

    We are a small community,
    We are a small community, aren't we?! Maggie, I am hoping to transcribe Dr. Kaminski's interview - just need to find the time to do it as it is very time-consuming and I have no one to help me. But I am determined to make it happen. Even as much as I know about RIT, there is so much information in this interview that no one can absorb it in one listen, so it does need to be written out. I will do my best, but I can't promise it will happen before the interview actually airs. I can tell you all this, though - Dr. Kaminski is absolutely fabulous in this interview. He explains RIT in lay language and dispels the many myths that are flying around about it. If this episode doesn't set the record straight on RIT, I don't know what will!

    Hugs to all,
    Betsy :)
  • JoanieP
    JoanieP Member Posts: 573
    #15
    cookingirl said:

    Has anyone used Radioimmunotherapy (RIT) for NHL?
    Wow - such great responses! Mary - believe it or not, I just wrote a personal email to Betsy before logging on to this site! My husband found her book several weeks ago on the website you mentioned, I ordered it and have read it twice - it will be my permanent reference book on lymphoma. VERY encouraging and I highly recommend anyone reading this post order a copy. The book was our introduction to RIT and so good to hear from two others just now who have been through it and recommend it. I am hoping and praying it will be the suggestion from Moffitt Dr.'s next Friday. As I wrote Betsy, my concern is that completing just one chemo (CVP-R) will not be enough to let me go right into Zevalin or Bexxar? Wondering how hard it is to get insurance approval for either? Thanks for all your advice and help - Fran

    Thinking of you Fran
    I was thinking of you at 4 this morning when my cat work me up. Wouldn't your Dr. let you wear a mask and gloves and the kids could visit so you could get lots of hugs. I know haw bad you miss them. Maybe they could stay somewhere else instead of your house and you could get some grandma time. It would boost your spirts until you are better and can go up there. Moffit is great. I think I will order that book also. Thinking of
    you and saying lots of prayers. Joanie
  • miss maggie
    miss maggie Member Posts: 929
    #16
    betsyde said:

    We are a small community,
    We are a small community, aren't we?! Maggie, I am hoping to transcribe Dr. Kaminski's interview - just need to find the time to do it as it is very time-consuming and I have no one to help me. But I am determined to make it happen. Even as much as I know about RIT, there is so much information in this interview that no one can absorb it in one listen, so it does need to be written out. I will do my best, but I can't promise it will happen before the interview actually airs. I can tell you all this, though - Dr. Kaminski is absolutely fabulous in this interview. He explains RIT in lay language and dispels the many myths that are flying around about it. If this episode doesn't set the record straight on RIT, I don't know what will!

    Hugs to all,
    Betsy :)

    Betsy
    Thank you so much for taking the time for your response. If you can't find the time, I understand. Please don't worry. I am not ready at this time for RIT. When the time comes, I will get info on your website.

    Yes, hugs to you and all. Maggie
  • cookingirl
    cookingirl Member Posts: 183 Member
    #17
    JoanieP said:

    Thinking of you Fran
    I was thinking of you at 4 this morning when my cat work me up. Wouldn't your Dr. let you wear a mask and gloves and the kids could visit so you could get lots of hugs. I know haw bad you miss them. Maybe they could stay somewhere else instead of your house and you could get some grandma time. It would boost your spirts until you are better and can go up there. Moffit is great. I think I will order that book also. Thinking of
    you and saying lots of prayers. Joanie

    Has anyone used RIT for NHL?
    Hi Joanie - that's a good suggestion about staying somewhere else and mask. I have a son and daughter, 3 Grans, spouses, etc. so much easier for hubby and I to go to VA for Thanksgiving to see them since they're all working than trying to get them here. Did that this summer but we'll see. I have a friend there with a large home and she's invited Sy and I to stay there if we're able to drive up (wouldn't think of flying with all the recycled air and germs) which is another option. So - we'll make our decision after visiting Moffitt next Friday! Sorry the cat woke you up at 4:00 today, but thanks for thinking of me! Fondly, Fran

Discussion Boards