George and Zevalin

cookingirl
cookingirl Member Posts: 183 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
George - you wrote in November on my post about Treanda/Bendamustine chemo after using it you had a Zevalin shot (radioimmmunotherapy). Believe it brought a quick remission and just wondering how you're doing a few months later? Thanks - Fran

Comments

  • 711tom
    711tom Member Posts: 44
    #2
    sorry I have not been on in awhile
    Actually i did Treanda in a clinical trial in 05 and it got me close to a complete remission but not quite. I did the Zevalin this past October but it was not following any chemo, I had 4 nodes that I could see and feel and many others internally. I am actually on my way to get my follow up scan today. After about three weeks (from the Z) I could not feel or see any of the 4 so i am hopeful this scan will be very positive, as always I am nervous but what can you do? I have researched but have been unable to find anyone who did Z as a single treatment (not following some sort of chemo). I have had this crap since 93 and I am hopeful this will take it away for a longtime.

    Fran I think about you often as I know the Treanda has not been kind to you. I pray that things are better and most importantly that it is quite effective. I will send you an update. The Z was relatively easy, the biggest issue was the drop in blood counts but they are back up and it never really affected any activities other than worry.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    711tom said:

    sorry I have not been on in awhile
    Actually i did Treanda in a clinical trial in 05 and it got me close to a complete remission but not quite. I did the Zevalin this past October but it was not following any chemo, I had 4 nodes that I could see and feel and many others internally. I am actually on my way to get my follow up scan today. After about three weeks (from the Z) I could not feel or see any of the 4 so i am hopeful this scan will be very positive, as always I am nervous but what can you do? I have researched but have been unable to find anyone who did Z as a single treatment (not following some sort of chemo). I have had this crap since 93 and I am hopeful this will take it away for a longtime.

    Fran I think about you often as I know the Treanda has not been kind to you. I pray that things are better and most importantly that it is quite effective. I will send you an update. The Z was relatively easy, the biggest issue was the drop in blood counts but they are back up and it never really affected any activities other than worry.

    Hi 711tom,
    I hope your scan results turned out good. Drop in and let us know.
    Take care...Sue (FNHL-2-3a-6/10)
  • cookingirl
    cookingirl Member Posts: 183 Member
    #4
    711tom said:

    sorry I have not been on in awhile
    Actually i did Treanda in a clinical trial in 05 and it got me close to a complete remission but not quite. I did the Zevalin this past October but it was not following any chemo, I had 4 nodes that I could see and feel and many others internally. I am actually on my way to get my follow up scan today. After about three weeks (from the Z) I could not feel or see any of the 4 so i am hopeful this scan will be very positive, as always I am nervous but what can you do? I have researched but have been unable to find anyone who did Z as a single treatment (not following some sort of chemo). I have had this crap since 93 and I am hopeful this will take it away for a longtime.

    Fran I think about you often as I know the Treanda has not been kind to you. I pray that things are better and most importantly that it is quite effective. I will send you an update. The Z was relatively easy, the biggest issue was the drop in blood counts but they are back up and it never really affected any activities other than worry.

    Hi - sorry I haven't been
    Hi - sorry I haven't been here for 4 days - George - I'm THRILLED to hear your great news!Congrats on your Remission - such music to your ears! And to all of us who are pulling for you and hoping the same for ourselves! WAY TO GO - so happy for you.

    Thank you so much for telling your Oncologist about me - how very kind. Wow - even as bad as the treatments are, I never once thought of giving up on them. Very encouraging to hear his two patients received such good remission from just 2 and 3 times! That gives me hope for Friday when we go to hear my results from Monday's CT scan. Have been nervous because I sure don't look any smaller, but perhaps something's been happening inside we just can't see. Not one Dr. has ever been able to feel my tumor, nor can I. It just pushes all my organs out of place and makes me look pregnant. I'm much more hopeful after reading your messages tonight and I'll post after seeing my Dr. late Friday morning.

    We had no idea Treanda had been around since 2005! You must have been in one of the very earliest clincial trials?

    Have you read Betsy de Parry's book, The Roller Coaster Chronicles? It's a paperback and one of the best books I've read on NHL. Every page jumped out at me as something I could have written if I were an author because I followed in her footsteps. Betsy failed remission with CVP-R as well as CHOP. She lives in Ann Arbor Michigan, and her Oncologist wa Dr. Kaminski, the Dr. who discovered Bexxar, Zevalin's rival and competitor of RIT's. Because Bexxar was then in closed clinical trials and Zevalin had received FDA approval in Feb. 2002, he sent her to another Dr. who could administer the approved one to her. She's now in an 8 year remission because of Zevalin! If you haven't read it, you absolutely must order a copy. I've read mine 3 times! As a result of my contacting her by email after finishing the book, she was kind enough to schedule a one hour phone conversation with my husband and I last Oct. before we made several trips to Moffit Cancer Center in Tampa. She's an amazing woman and Lymphoma's greatest patient advocate.

    Keep in touch! Fran
  • 711tom
    711tom Member Posts: 44
    #5
    cookingirl said:

    Hi - sorry I haven't been
    Hi - sorry I haven't been here for 4 days - George - I'm THRILLED to hear your great news!Congrats on your Remission - such music to your ears! And to all of us who are pulling for you and hoping the same for ourselves! WAY TO GO - so happy for you.

    Thank you so much for telling your Oncologist about me - how very kind. Wow - even as bad as the treatments are, I never once thought of giving up on them. Very encouraging to hear his two patients received such good remission from just 2 and 3 times! That gives me hope for Friday when we go to hear my results from Monday's CT scan. Have been nervous because I sure don't look any smaller, but perhaps something's been happening inside we just can't see. Not one Dr. has ever been able to feel my tumor, nor can I. It just pushes all my organs out of place and makes me look pregnant. I'm much more hopeful after reading your messages tonight and I'll post after seeing my Dr. late Friday morning.

    We had no idea Treanda had been around since 2005! You must have been in one of the very earliest clincial trials?

    Have you read Betsy de Parry's book, The Roller Coaster Chronicles? It's a paperback and one of the best books I've read on NHL. Every page jumped out at me as something I could have written if I were an author because I followed in her footsteps. Betsy failed remission with CVP-R as well as CHOP. She lives in Ann Arbor Michigan, and her Oncologist wa Dr. Kaminski, the Dr. who discovered Bexxar, Zevalin's rival and competitor of RIT's. Because Bexxar was then in closed clinical trials and Zevalin had received FDA approval in Feb. 2002, he sent her to another Dr. who could administer the approved one to her. She's now in an 8 year remission because of Zevalin! If you haven't read it, you absolutely must order a copy. I've read mine 3 times! As a result of my contacting her by email after finishing the book, she was kind enough to schedule a one hour phone conversation with my husband and I last Oct. before we made several trips to Moffit Cancer Center in Tampa. She's an amazing woman and Lymphoma's greatest patient advocate.

    Keep in touch! Fran

    Thank you all!!!!!!
    Thank you all for the kind words and thoughts. I do not get on this board as often as I would like but I do think about the people on here daily. You are all in my daily prayers as we continue our battle against this disease. Thank you all sincerely for the inspiration you have provided!

    Fran, i was in one of the first clinical trials in Virginia with Bendamustine. It' funny, I had an appointment to have a port put in the next day and start a regiment of Fludorabine when i saw a trial at UVA Hospital in Charlottesville, VA. I met the ONC there and my wife and I fell in love with him as he spent nearly three hours with us. I never got the port and obviously never have done the fludorabine. he has been my ONC ever since even though he is 80 miles away.

    Fran, I have read Betsy's book and i spoke to her on the phone twice before I made my decision to try Zevalin. She is just awesome and she really helped me push to get the RIT treatment. This Z really worked well, my counts fell off pretty sharply in week 4 but they bounced back after 8-10 days. I was lucky in that respect as I know a few on this board who have struggled with low counts a lot longer. Anyway i would pursue this course of treatment with your Doc's after you complete treanda. I am obviously a big fan of Z now but I had 6 tumors larger than 3cm when I started. the largest was over 6cm so don't let that stop you. Fran i hope your treatments are getting better as I pray nightly that they are. I know how difficult a prolonged treatment can be as CHOP was not very kind to me in 93. I also pray that tomorrow is a great day for you. Let us know how your appt tomorrow goes.

    take care and thank you all!!
    George
  • britta
    britta Member Posts: 107
    #6
    711tom said:

    Thank you all!!!!!!
    Thank you all for the kind words and thoughts. I do not get on this board as often as I would like but I do think about the people on here daily. You are all in my daily prayers as we continue our battle against this disease. Thank you all sincerely for the inspiration you have provided!

    Fran, i was in one of the first clinical trials in Virginia with Bendamustine. It' funny, I had an appointment to have a port put in the next day and start a regiment of Fludorabine when i saw a trial at UVA Hospital in Charlottesville, VA. I met the ONC there and my wife and I fell in love with him as he spent nearly three hours with us. I never got the port and obviously never have done the fludorabine. he has been my ONC ever since even though he is 80 miles away.

    Fran, I have read Betsy's book and i spoke to her on the phone twice before I made my decision to try Zevalin. She is just awesome and she really helped me push to get the RIT treatment. This Z really worked well, my counts fell off pretty sharply in week 4 but they bounced back after 8-10 days. I was lucky in that respect as I know a few on this board who have struggled with low counts a lot longer. Anyway i would pursue this course of treatment with your Doc's after you complete treanda. I am obviously a big fan of Z now but I had 6 tumors larger than 3cm when I started. the largest was over 6cm so don't let that stop you. Fran i hope your treatments are getting better as I pray nightly that they are. I know how difficult a prolonged treatment can be as CHOP was not very kind to me in 93. I also pray that tomorrow is a great day for you. Let us know how your appt tomorrow goes.

    take care and thank you all!!
    George

    George,
    Looks like I'm the
    George,

    Looks like I'm the last one to see you are in remission. So very happy for you. What did you mean though about being done for a year. You don't have to have another treatment do you?

    My CBC numbers finally came back, but it took a full six months. I still can't sleept at night, even with taking Ambien. It gets frustrating and lonely up til all hours. I notice Hilde is having same problem.

    Well, I guess the main thing, is we are in REMISSION, and that is sure enough to be thankful for. Blessings and prayers to all.

    Darlene
  • 711tom
    711tom Member Posts: 44
    #7
    britta said:

    George,
    Looks like I'm the
    George,

    Looks like I'm the last one to see you are in remission. So very happy for you. What did you mean though about being done for a year. You don't have to have another treatment do you?

    My CBC numbers finally came back, but it took a full six months. I still can't sleept at night, even with taking Ambien. It gets frustrating and lonely up til all hours. I notice Hilde is having same problem.

    Well, I guess the main thing, is we are in REMISSION, and that is sure enough to be thankful for. Blessings and prayers to all.

    Darlene

    Thanks Darlene!!
    Thank you for the good wishes, I am sorry you are having trouble sleeping but I am really glad that the counts are back up. I am off for a year from having to go see my ONC for a check up unless i feel some symptom, it's a good thing. Stay strong Darlene and let's ride this remission for a long long time!!

    George

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