University of Michigan

ShellBell77
ShellBell77 Member Posts: 7
in Lymphoma (Hodgkin and Non-Hodgkin) #1
So, yesterday I went down to Ann Arbor to the University of Michigan to talk with a Lymphoma specialist. They told me my case was rare. That I have Nodular lymphocyte predominant Hodgkin’s lymphoma (NLPHL) It is one of the less frequent types of Hodgkin’s disease comprising about 5% of all cases of this cancer. They said they give me a 70% chance of making the cancer go away BUT only a 50% chance that it won't return within 3 years. Meaning it will tend to come back and I'll be lucky to get a remission of even 3 years. They are going to talk about chemo plus Rituxan and talk about bone marrow transplant as well. Dr. Bixby said that he and a team of other Hematologists and Pathologists and Radiologists would talk about my case this thursday and come up with what they think will be the best plan for me and will be calling me this friday to tell me their plan.

At this moment I am really not sure what to think or feel...

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    Sounds good
    It sounds good so far and from everything I've learned, we will have to deal with our cancer from time to time. One good thing though, there always seem to be another treatment available when it does come back. Sounds like your doctors are on top of things.Please let us know what you find out. Take care and we are here for you. Love...Sue (FNHL-2-3A-6/10)
  • cookingirl
    cookingirl Member Posts: 183 Member
    #3
    Univ. of MI
    Hello from Florida. Haven't heard of your type of cancer, but I'm Follicular NHL and there's probably little in common with yours. BUT I'm sure you know you're at one of the top hospitals in the country for Lymphoma so you're in very good hands. I would certainly take the Dr.'s advice.

    Have you by any chance come across Dr. Kaminski on staff there who discovered Zevelin, a type of radio-immunotherapy? I've very interested in that treatment - have done two chemos this year without a break, and with only reaching a partial remission from them both. Dr. K. is at your university and one of the leading people in the country. I understand from the book I read by Betsyde Parry that remission can be up to 10 years with this treatment. It can only be given at the larger cancer centers and I'm checking into it.

    You're young, so I wouldn't be surprised if the recommend a BMT for you. Please post again after learning of your treatment and the very best of luck to you - Fran
  • ShellBell77
    ShellBell77 Member Posts: 7
    #4
    cookingirl said:

    Univ. of MI
    Hello from Florida. Haven't heard of your type of cancer, but I'm Follicular NHL and there's probably little in common with yours. BUT I'm sure you know you're at one of the top hospitals in the country for Lymphoma so you're in very good hands. I would certainly take the Dr.'s advice.

    Have you by any chance come across Dr. Kaminski on staff there who discovered Zevelin, a type of radio-immunotherapy? I've very interested in that treatment - have done two chemos this year without a break, and with only reaching a partial remission from them both. Dr. K. is at your university and one of the leading people in the country. I understand from the book I read by Betsyde Parry that remission can be up to 10 years with this treatment. It can only be given at the larger cancer centers and I'm checking into it.

    You're young, so I wouldn't be surprised if the recommend a BMT for you. Please post again after learning of your treatment and the very best of luck to you - Fran

    Update
    I am sitting here in the Grand Rapids Butterworth hospital. I am going to be here for 5 days doing R.I.C.E. chemo. I have already done the Rituxan and the VP16 aka the "E" and tomorrow I do the I and the C plus the VP16 again I think....my memory is shot from chemo brain....I'll try to come back and update it when I know better lol
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    ShellBell77 said:

    Update
    I am sitting here in the Grand Rapids Butterworth hospital. I am going to be here for 5 days doing R.I.C.E. chemo. I have already done the Rituxan and the VP16 aka the "E" and tomorrow I do the I and the C plus the VP16 again I think....my memory is shot from chemo brain....I'll try to come back and update it when I know better lol

    Hospital
    Hi ShellBell,
    Thank you for checking back in. Sorry you have to be in the hospital to get this treatment, but it seems to be the standard procedure with R.I.C.E. I hope you have things to help pass the time..books, computer, etc. Rest when you can and I'll keep good thoughts and prayers coming your way. Best wishes...Sue (FNHL-2-3A-6/10)
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #6
    allmost60 said:

    Hospital
    Hi ShellBell,
    Thank you for checking back in. Sorry you have to be in the hospital to get this treatment, but it seems to be the standard procedure with R.I.C.E. I hope you have things to help pass the time..books, computer, etc. Rest when you can and I'll keep good thoughts and prayers coming your way. Best wishes...Sue (FNHL-2-3A-6/10)

    RICE
    Good luck to you with the RICE. I did 2 rounds of it before my SCT. I was lucky and did not have to be in the hospital with it, but it was tough. It really kicked my butt for a bit. It really knocked me for a loop.

    Get lots of rest and hope you do well with it!

    Take care,
    Beth
  • moftexas
    moftexas Member Posts: 13
    #7
    cookingirl said:

    Univ. of MI
    Hello from Florida. Haven't heard of your type of cancer, but I'm Follicular NHL and there's probably little in common with yours. BUT I'm sure you know you're at one of the top hospitals in the country for Lymphoma so you're in very good hands. I would certainly take the Dr.'s advice.

    Have you by any chance come across Dr. Kaminski on staff there who discovered Zevelin, a type of radio-immunotherapy? I've very interested in that treatment - have done two chemos this year without a break, and with only reaching a partial remission from them both. Dr. K. is at your university and one of the leading people in the country. I understand from the book I read by Betsyde Parry that remission can be up to 10 years with this treatment. It can only be given at the larger cancer centers and I'm checking into it.

    You're young, so I wouldn't be surprised if the recommend a BMT for you. Please post again after learning of your treatment and the very best of luck to you - Fran

    Zevalin
    I also have Follicular NHL and was treated at MD Anderson in Houston. I underwent the Zevalin treatment after my chemotherapy (RFND) was completed. They give you a dosage of Rituxan and follow it with the Zevalin, which attaches itself to the Rituxan so it goes directly to your B cells. They expect my remission to be several years longer with this. It was pretty hard on my platelets, red blood count and white count. Had to have several transfusions. They keep a very careful watch on you for a drop in counts and about 5 weeks after the treatment, things dropped like rocks. After a few months, everything started to recover and get back to acceptable levels. It isn't easy, but nothing about cancer is. If it keeps it away longer, it will be great. Good luck to you.

    MofTexas
  • cookingirl
    cookingirl Member Posts: 183 Member
    #8
    moftexas said:

    Zevalin
    I also have Follicular NHL and was treated at MD Anderson in Houston. I underwent the Zevalin treatment after my chemotherapy (RFND) was completed. They give you a dosage of Rituxan and follow it with the Zevalin, which attaches itself to the Rituxan so it goes directly to your B cells. They expect my remission to be several years longer with this. It was pretty hard on my platelets, red blood count and white count. Had to have several transfusions. They keep a very careful watch on you for a drop in counts and about 5 weeks after the treatment, things dropped like rocks. After a few months, everything started to recover and get back to acceptable levels. It isn't easy, but nothing about cancer is. If it keeps it away longer, it will be great. Good luck to you.

    MofTexas

    Zevalin
    Thanks so much, MofTexas, for your info on Zevalin. New info but I did know your counts as well as platelets dropping was the norm.

    My Oncologist Tues. said he'd do one treatment of Rituxan (since they don't do RIT locally), then in August order another PET scan to see if my tumor had shrunk. My understanding is the size must be under 2.2cm in order to do Zevalin, and your bone marrow involvement must be under 25%. Have you heard of this being a requirement? He will send me back to Moffitt in Tampa when I reach the 2.2.

    What I read about Zevalin or Bexxar is they do two infusions two weeks apart. How long ago did you have it? Did you have to stay away from others during the months until you started to recover? Thanks for your response -
  • cookingirl
    cookingirl Member Posts: 183 Member
    #9
    moftexas said:

    Zevalin
    I also have Follicular NHL and was treated at MD Anderson in Houston. I underwent the Zevalin treatment after my chemotherapy (RFND) was completed. They give you a dosage of Rituxan and follow it with the Zevalin, which attaches itself to the Rituxan so it goes directly to your B cells. They expect my remission to be several years longer with this. It was pretty hard on my platelets, red blood count and white count. Had to have several transfusions. They keep a very careful watch on you for a drop in counts and about 5 weeks after the treatment, things dropped like rocks. After a few months, everything started to recover and get back to acceptable levels. It isn't easy, but nothing about cancer is. If it keeps it away longer, it will be great. Good luck to you.

    MofTexas

    Zevalin
    Thanks so much, MofTexas, for your info on Zevalin. New info but I did know your counts as well as platelets dropping was the norm.

    My Oncologist Tues. said he'd do one treatment of Rituxan (since they don't do RIT locally), then in August order another PET scan to see if my tumor had shrunk. My understanding is the size must be under 2.2cm in order to do Zevalin, and your bone marrow involvement must be under 25%. Have you heard of this being a requirement? He will send me back to Moffitt in Tampa when I reach the 2.2.

    What I read about Zevalin or Bexxar is they do two infusions two weeks apart. How long ago did you have it? Did you have to stay away from others during the months until you started to recover? Thanks for your response -
  • moftexas
    moftexas Member Posts: 13
    #10
    cookingirl said:

    Zevalin
    Thanks so much, MofTexas, for your info on Zevalin. New info but I did know your counts as well as platelets dropping was the norm.

    My Oncologist Tues. said he'd do one treatment of Rituxan (since they don't do RIT locally), then in August order another PET scan to see if my tumor had shrunk. My understanding is the size must be under 2.2cm in order to do Zevalin, and your bone marrow involvement must be under 25%. Have you heard of this being a requirement? He will send me back to Moffitt in Tampa when I reach the 2.2.

    What I read about Zevalin or Bexxar is they do two infusions two weeks apart. How long ago did you have it? Did you have to stay away from others during the months until you started to recover? Thanks for your response -

    Zevalin
    They did my infustions one week apart. The first one was really a very small dosage to ensure it was going all over the body and not focusing in on one area. I know there were requirements on when you can do it - I thought it was being in remission, but I could be wrong about that.

    I had mine in September of 2009. They said this radioactive material didn't really affect things outside my body. I didn't feel like being around anyone for a week or two. It made me very tired. I did stay away from children and pregnant women, but really didn't have to. I just chose to keep a safe distance for a two weeks. I felt better after a couple of weeks and went back to work, but in 5 weeks is when my counts dropped.

    Keep us posted.

    M

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