Radiation for Follicular Lymphoma

britta
britta Member Posts: 107
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi you guys,

Has anyone received radiation for follicular lymphoma? I received R-CVP in 2010 with complete remission, it was followed up with Zevalin In July 2010. One year later and I have a walnut size tumor in my groin. Dr. is recommending radiation. I have an appointment with the radiologist on Friday, the 23. I'm really bummed that the remission was short lived, especially after doing the Zevalin.

Anyone??

Britta

Comments

  • violinist1
    violinist1 Member Posts: 33
    #2
    radiation
    Dear Britta,
    I had 16 days of localized radiation to my left groin for flooicular non hodgkins lymphoma this last june. I was stage one grade one. I have had no other treatment other than surgury to remove enlarged inguinal lymph node in april. After i finished radiation, i had what they call a very bD reaction to it, slept and was nauseous 6 hours a day for allof july. Better now , but still have the fatigue about once a week. The radiation onc told me that side effects woukd be minimal and that he had not heard of what i described. We believe thattheu really downplay it or no one would eant to do it. Knowing how sick i was, i would gladlydoit again if it were my best option. +now i am being screened with scans every 3 months for the next? Years.
  • violinist1
    violinist1 Member Posts: 33
    #3
    radiation
    Dear Britta,
    I had 16 days of localized radiation to my left groin for follicular non hodgkins lymphoma this last june. I was stage one grade one. I have had no other treatment other than surgury to remove enlarged inguinal lymph node in april. After i finished radiation, i had what they call a very bD reaction to it, slept and was nauseous 6 hours a day for allof july. Better now , but still have the fatigue about once a week. The radiation onc told me that side effects woukd be minimal and that he had not heard of what i described. We believe thattheu really downplay it or no one would eant to do it. Knowing how sick i was, i would gladlydoit again if it were my best option. +now i am being screened with scans every 3 months for the next? Years.
  • violinist1
    violinist1 Member Posts: 33
    #4
    radiation
    Dear Britta,
    I had 16 days of localized radiation to my left groin for follicular non hodgkins lymphoma this last june. I was stage one grade one. I have had no other treatment other than surgury to remove enlarged inguinal lymph node in april. After i finished radiation, i had what they call a very bD reaction to it, slept and was nauseous 6 hours a day for allof july. Better now , but still have the fatigue about once a week. The radiation onc told me that side effects woukd be minimal and that he had not heard of what i described. We believe thattheu really downplay it or no one would eant to do it. Knowing how sick i was, i would gladlydoit again if it were my best option. +now i am being screened with scans every 3 months for the next? Years.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #5
    Rads
    I had 17 radiation treatments to my left hip and it's never come back in that spot. I have had relapses and just had a stem cell transplant in June of this year.

    I understand the frustration of the relapse so soon, but it's just the nature of the beast I think. Hopefully with this transplant I can get to a stronger remission. I'll be happy if I can get 4-5 years but the transplant doc said I have a 50/50 shot of a cure. With Follicular lymphoma I've never heard the cure word before, but he says they have come a long way with this stuff.

    I go tomorrow for my 100 day checkup and I had my pet scan today. My fingers, eyes, legs, and every hair on my head is crossed hoping for great news!

    Take care,
    Beth
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    Hi Britta,
    I'm so sorry your remission didn't last longer. My biggest fear is "when" and "where" my FNHL will show up again. I'm 9 months out from finishing R-CVP and in August I finished my 4th round of 2 year maint Rituxan..I think I have 12 more R rounds to go, as long as no new tumors or problems occur. My Onc has not talked about doing any radiation, but did say I had 3 or 4 different chemo protocols he can use if a recurrance happens. I had a walnut size tumor removed from my groin in June 2010 and after pathology of it is when I found out I had FNHL. Please let us know how your appointment with the radiologist goes. Sure wish you didn't have to go down this road again so soon. Much love...Sue (FNHL-2-3A-6/10)
  • Go_go_Gi_gi
    Go_go_Gi_gi Member Posts: 84
    #7
    allmost60 said:

    Hi Britta,
    I'm so sorry your remission didn't last longer. My biggest fear is "when" and "where" my FNHL will show up again. I'm 9 months out from finishing R-CVP and in August I finished my 4th round of 2 year maint Rituxan..I think I have 12 more R rounds to go, as long as no new tumors or problems occur. My Onc has not talked about doing any radiation, but did say I had 3 or 4 different chemo protocols he can use if a recurrance happens. I had a walnut size tumor removed from my groin in June 2010 and after pathology of it is when I found out I had FNHL. Please let us know how your appointment with the radiologist goes. Sure wish you didn't have to go down this road again so soon. Much love...Sue (FNHL-2-3A-6/10)

    So sorry you are going through this relapse Britta. Since I am newly diagnosed, Aug.22, 2011. I am just starting 2nd cycle of chemo-- All of my involved nodes were either in my abdomen or chest--so no nodes for surgical removal and too spread out for radiation. Will be praying for you as you move forward; especially that you will not have any significant side effects from the radiation and it will "KNOCK IT OUT!!!"
    Prayers and hugs to and for you-- Susan
  • britta
    britta Member Posts: 107
    #8
    violinist1 said:

    radiation
    Dear Britta,
    I had 16 days of localized radiation to my left groin for flooicular non hodgkins lymphoma this last june. I was stage one grade one. I have had no other treatment other than surgury to remove enlarged inguinal lymph node in april. After i finished radiation, i had what they call a very bD reaction to it, slept and was nauseous 6 hours a day for allof july. Better now , but still have the fatigue about once a week. The radiation onc told me that side effects woukd be minimal and that he had not heard of what i described. We believe thattheu really downplay it or no one would eant to do it. Knowing how sick i was, i would gladlydoit again if it were my best option. +now i am being screened with scans every 3 months for the next? Years.

    Radiation
    Thanks for you response. I really hadn't noticed anyone having done the radiation before. Most of us do some kind of chemo and then Rituxin maintenance or one of the RITs.
    I was stunned when it came back so soon. I think the median remission was about 4 years. I've been reading about the radiation today and they say it is given for a cure or pallative care. Wonder which group I'm in??

    Stay well and stay on top of it and you'll do fine.

    Darlene
  • britta
    britta Member Posts: 107
    #9
    dixiegirl said:

    Rads
    I had 17 radiation treatments to my left hip and it's never come back in that spot. I have had relapses and just had a stem cell transplant in June of this year.

    I understand the frustration of the relapse so soon, but it's just the nature of the beast I think. Hopefully with this transplant I can get to a stronger remission. I'll be happy if I can get 4-5 years but the transplant doc said I have a 50/50 shot of a cure. With Follicular lymphoma I've never heard the cure word before, but he says they have come a long way with this stuff.

    I go tomorrow for my 100 day checkup and I had my pet scan today. My fingers, eyes, legs, and every hair on my head is crossed hoping for great news!

    Take care,
    Beth

    Rads
    Beth,

    You look so young and sweet. After all this, you deserve a new life w/o cancer. I pray that there is a cure for you. I read a book by a pastor awhile back who had a stem cell transplant almost 20 years ago, I listen to the guy on the radio every day so there is hope!!!

    I know you'll be celebrating tomorrow. Prayers for you.

    Darlene
  • britta
    britta Member Posts: 107
    #10
    allmost60 said:

    Hi Britta,
    I'm so sorry your remission didn't last longer. My biggest fear is "when" and "where" my FNHL will show up again. I'm 9 months out from finishing R-CVP and in August I finished my 4th round of 2 year maint Rituxan..I think I have 12 more R rounds to go, as long as no new tumors or problems occur. My Onc has not talked about doing any radiation, but did say I had 3 or 4 different chemo protocols he can use if a recurrance happens. I had a walnut size tumor removed from my groin in June 2010 and after pathology of it is when I found out I had FNHL. Please let us know how your appointment with the radiologist goes. Sure wish you didn't have to go down this road again so soon. Much love...Sue (FNHL-2-3A-6/10)

    Sue,
    You are such a
    Sue,

    You are such a encourager, I've seen you on the board from the beginning, and I don't think anyone's post gets by you without a positive response. They can't remove the tumor in my groin, but now, they want to get a bigger hunk of it. Still have an appointment with radiologist on Friday, and tomorrow I will find out if I have to have another biopsy, and that probably will be Friday also. Was down this same road last time, and I got an infection and delayed start of chemo for three months. Hope this goes well. I guess we can never get to comfortable.

    Little Lizzie is sure getting big and is so cute.

    Darlene
  • violinist1
    violinist1 Member Posts: 33
    #11
    britta said:

    Radiation
    Thanks for you response. I really hadn't noticed anyone having done the radiation before. Most of us do some kind of chemo and then Rituxin maintenance or one of the RITs.
    I was stunned when it came back so soon. I think the median remission was about 4 years. I've been reading about the radiation today and they say it is given for a cure or pallative care. Wonder which group I'm in??

    Stay well and stay on top of it and you'll do fine.

    Darlene

    median remission
    Hi,
    Do you remember where you read about median remission times? I haven't heard a thing about that.

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