interferon vs chemo in lymphomatoid granulomatosis

alisa d
alisa d Member Posts: 10
in Lymphoma (Hodgkin and Non-Hodgkin) #1
about 8 months ago my 28 yr old husband was diagnosed (after about a yr of misdiagnosis)with lymphomatoid granulomatosis grade 3.he has already endured one 6 month course of chemo ( r chop)with minimal results.his dr. changed his chemo regiment to r-ice. only recently have i found out about the use of interferon as treatment and would like more info from anyone who has has both chemo and interferon therapy. i am desperate for any help with this as his prognosis is not very good

Comments

  • jimwins
    jimwins Member Posts: 2,107
    #2
    Welcome Alisa
    Hi Alisa and welcome to this site. You'll find wonderfully
    supportive and caring folks here.

    I did a little research on this and it's apparently a fairly rare
    disease. I saw references to Epstein Bar Virus associated with this
    as well as Interferon treatment on the web. In this search I found
    a link to a posting on this site under rare and other cancers.
    I've pasted some links below so hopefully you can get in touch
    with some of those folks dealing with the same issue.

    Link to post
    (Rare and other cancers)

    Search results under Rare and Other for "LG"

    I quickly looked through these links and some are old and I'm not sure why some of
    them came up in the search results. I'm not sure if it will of much help.


    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
  • alisa d
    alisa d Member Posts: 10
    #3
    jimwins said:

    Welcome Alisa
    Hi Alisa and welcome to this site. You'll find wonderfully
    supportive and caring folks here.

    I did a little research on this and it's apparently a fairly rare
    disease. I saw references to Epstein Bar Virus associated with this
    as well as Interferon treatment on the web. In this search I found
    a link to a posting on this site under rare and other cancers.
    I've pasted some links below so hopefully you can get in touch
    with some of those folks dealing with the same issue.

    Link to post
    (Rare and other cancers)

    Search results under Rare and Other for "LG"

    I quickly looked through these links and some are old and I'm not sure why some of
    them came up in the search results. I'm not sure if it will of much help.


    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

    thanks
    thanks for the welcome, and the links and congrats on your remission. May you be cancer free the rest of your days!
  • miss maggie
    miss maggie Member Posts: 929
    #4
    jimwins said:

    Welcome Alisa
    Hi Alisa and welcome to this site. You'll find wonderfully
    supportive and caring folks here.

    I did a little research on this and it's apparently a fairly rare
    disease. I saw references to Epstein Bar Virus associated with this
    as well as Interferon treatment on the web. In this search I found
    a link to a posting on this site under rare and other cancers.
    I've pasted some links below so hopefully you can get in touch
    with some of those folks dealing with the same issue.

    Link to post
    (Rare and other cancers)

    Search results under Rare and Other for "LG"

    I quickly looked through these links and some are old and I'm not sure why some of
    them came up in the search results. I'm not sure if it will of much help.


    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

    Once again
    Good morning Jim,

    What would most of us do without you???? I can't help myself, I just have to write
    my thank you's.

    This morning I am feeling so sorry for myself. I can no longer put off surgery for my hip.
    Right now I am depending on pain medication. I don't like the feeling from the medication. Why anyone would want, or become addicted to this medication? I am doing research on
    Orthopediac surgeons. My wonderful doctor through the years, was going to send me to a
    surgeon with 4 malpractice legal problems in the last 2 1/2 years. 2 were settled with
    large sums of money. It just goes to show, we have to be our own advocates. I realize
    I can no longer put surgery off. Still I will be so careful choosing a doctor. It might
    take some time. That's OK. A few weeks won't make such a difference.

    Thank you for being there. hugs and love Maggie
  • jimwins
    jimwins Member Posts: 2,107
    #5
    miss maggie said:

    Once again
    Good morning Jim,

    What would most of us do without you???? I can't help myself, I just have to write
    my thank you's.

    This morning I am feeling so sorry for myself. I can no longer put off surgery for my hip.
    Right now I am depending on pain medication. I don't like the feeling from the medication. Why anyone would want, or become addicted to this medication? I am doing research on
    Orthopediac surgeons. My wonderful doctor through the years, was going to send me to a
    surgeon with 4 malpractice legal problems in the last 2 1/2 years. 2 were settled with
    large sums of money. It just goes to show, we have to be our own advocates. I realize
    I can no longer put surgery off. Still I will be so careful choosing a doctor. It might
    take some time. That's OK. A few weeks won't make such a difference.

    Thank you for being there. hugs and love Maggie

    Hey Maggie
    Hi Maggie and thank you but I probably have more time on my hands
    than most here. I don't have kids/grand kids around and am
    home a lot so I do have time on my hands. I should probably be cleaning
    house and doing other chores but what's the fun in that? ;)
    Besides, somebody has to "beat up" on John on occasion too :).

    I'm so thankful for you and everyone here. I've been very fortunate so far
    but I know that could cnange at any time so you guys are my lifeline at
    times too. So I do get something out of this too :).

    I'm copying a response from CathyP on another post (I'm sure you've
    read it but others may have not). You should take your time to find
    a surgeon you are comfortable with. From what Cathy says regarding her
    mother, the results were great!

    You know we're here with you for that too. Just don't go all "Jamie
    Sommers" on us and start fighting crime like Lindsay Wagner (Bionic Woman).
    (Don't know if you watched that show from the late 70's).

    Big hugs Maggie,

    Jim

    Cathy's Post:
    ==============

    Orthopaedic Surgeons (CathyP)


    Hi Maggie,
    I sent you a private message in response to reading another post from you re your hip before I read this post. I work for Ortho's and my mother was a hip replacement patient. My mom had her surgery in November. I had Thanksgiving at my house but she made most of the side dishes and she went on to host Christmas Eve. In the spring she was polka dancing and that summer climbed waterfalls! The key was she had a fellowship trained hip surgeon, did her physical therapy before and after surgery. It paid off because the pain medication was stopped days after her surgery. Her quality of life sky rocketed! Her only regret is that she wished she did it sooner.
    Good Luck Maggie!
  • miss maggie
    miss maggie Member Posts: 929
    #6
    jimwins said:

    Hey Maggie
    Hi Maggie and thank you but I probably have more time on my hands
    than most here. I don't have kids/grand kids around and am
    home a lot so I do have time on my hands. I should probably be cleaning
    house and doing other chores but what's the fun in that? ;)
    Besides, somebody has to "beat up" on John on occasion too :).

    I'm so thankful for you and everyone here. I've been very fortunate so far
    but I know that could cnange at any time so you guys are my lifeline at
    times too. So I do get something out of this too :).

    I'm copying a response from CathyP on another post (I'm sure you've
    read it but others may have not). You should take your time to find
    a surgeon you are comfortable with. From what Cathy says regarding her
    mother, the results were great!

    You know we're here with you for that too. Just don't go all "Jamie
    Sommers" on us and start fighting crime like Lindsay Wagner (Bionic Woman).
    (Don't know if you watched that show from the late 70's).

    Big hugs Maggie,

    Jim

    Cathy's Post:
    ==============

    Orthopaedic Surgeons (CathyP)


    Hi Maggie,
    I sent you a private message in response to reading another post from you re your hip before I read this post. I work for Ortho's and my mother was a hip replacement patient. My mom had her surgery in November. I had Thanksgiving at my house but she made most of the side dishes and she went on to host Christmas Eve. In the spring she was polka dancing and that summer climbed waterfalls! The key was she had a fellowship trained hip surgeon, did her physical therapy before and after surgery. It paid off because the pain medication was stopped days after her surgery. Her quality of life sky rocketed! Her only regret is that she wished she did it sooner.
    Good Luck Maggie!

    My other post
    Dear Sweet Jim,

    Yes, Jim I value so much the information Cathy sent.

    Forgive me, I am so glad you have time on your hands to be here for all of us. Did you read my post to Cathy and Liz? If not, I wrote " if I were free of NHL forever, and in remission forever, I would still find time to be on this site." All of you are my family now. I love all of you.

    Stay with us Jim always. Love and hugs from me, Maggie
  • brownderby
    brownderby Member Posts: 4
    #7
    Alisa - if you have not yet
    Alisa - if you have not yet already, you should contact NIH in Bethesda, MD who has a clinical trial for LYG.

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