Hodgkins Lymphoma for the 2nd time

diazr1
diazr1 Member Posts: 101
edited March 2012 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi
I have had 2 transplants (bone marrow from sister and stem cell of my own ) transplants and it has seems to come back again . I seem to take well to all chemos they give me as I go into remission but it doesnt seem to go away. These last test said its a chance its back based of bone scars in a pet scan that then were looked at closer through an MRI. Dr did a bone marrow biopsy and then said it a possibility its back... How can they not tell if it is for sure ?.... Any advice is appreciated
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Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    BMB
    Hi diazr1,
    The only thing I can think of is that maybe when they did your BMB they didn't get enough from the bone? My doctor had to go in 3 times(3 seperate locations) in my left hip before getting a good enough sample to send off to pathology. It was very painful and not something I EVER want to go through again! You should ask your doctor what the deal is on him saying it's a "possibility" instead of giving you a firm yes or no diagnosis. Take care, and I hope you get some answers soon. Best wishes...Sue
    Follicular NHL-stage3-grade2-typeA-diagnosed June 2010-age 61.
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #3
    I can relate
    Hi,I'm going thru the same thing, on a PET scan there is still activity in my pelvic bone, where the cancer was it's worse. They think it's treatment related and will take a watch and wait approach. I too responded well to the chemo treatment, except for the hip area. There are acceptable level's of uptake, on your PET scan, the area that is in question, is it under 2.5???? Vinny
  • diazr1
    diazr1 Member Posts: 101
    #4
    vinny59 said:

    I can relate
    Hi,I'm going thru the same thing, on a PET scan there is still activity in my pelvic bone, where the cancer was it's worse. They think it's treatment related and will take a watch and wait approach. I too responded well to the chemo treatment, except for the hip area. There are acceptable level's of uptake, on your PET scan, the area that is in question, is it under 2.5???? Vinny

    The Dr didn't tell me the
    The Dr didn't tell me the scar sizes, but since then I have been losing my appetite (maybe stress). I still eat but not like a hog like I use to. I did ask for a more definite answer. Thanks and sue I'll keep u posted
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #5
    diazr1 said:

    The Dr didn't tell me the
    The Dr didn't tell me the scar sizes, but since then I have been losing my appetite (maybe stress). I still eat but not like a hog like I use to. I did ask for a more definite answer. Thanks and sue I'll keep u posted

    ok
    Good luck, and please keep us updated...... Thanks
  • caregiver1829
    caregiver1829 Member Posts: 51
    #6
    back
    hi there, if its back, ask your doc about a drug called TREANDA w/rituxin,, My wifes nhl is back for the 3 rd time,, we too had one auto blood stem cell and it only worked for a year,, countrygirl7557 used this drug 2 yrs ago on her first round of nhl and shes been clear for 2 years now.. we hopeing it will do the same for my wife.. we find out mar 14th 2012 what exactly we have and how bad.. good luck jan..
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #7
    caregiver1829 said:

    back
    hi there, if its back, ask your doc about a drug called TREANDA w/rituxin,, My wifes nhl is back for the 3 rd time,, we too had one auto blood stem cell and it only worked for a year,, countrygirl7557 used this drug 2 yrs ago on her first round of nhl and shes been clear for 2 years now.. we hopeing it will do the same for my wife.. we find out mar 14th 2012 what exactly we have and how bad.. good luck jan..

    NHL
    What was the initial diagnosis? John
  • diazr1
    diazr1 Member Posts: 101
    #8
    COBRA666 said:

    NHL
    What was the initial diagnosis? John

    I'm Hd so would those meds
    I'm HL so would those meds work for me ?
  • diazr1
    diazr1 Member Posts: 101
    #9
    diazr1 said:

    I'm Hd so would those meds
    I'm HL so would those meds work for me ?

    Update
    Need another BMB will be getting it tommorow . Got a call from Bone Marrow Transplant Dr and they want to get me approved for a clinical Study of Adcetris (SGN35) for Relapse HL. Well this morning I go see the oncologist and she was constantly saying "IF" it get approved and then went into if not then they will try MOPP and that I will never be cured and they will prolong my life ( Almost wish I never asked some questions ) I went crazy.

    I just wanted to come on here and update everyone

    Another thing I got a call from City of Hope saying I have an Infusion next friday. I hope that means it got approved
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #10
    diazr1 said:

    Update
    Need another BMB will be getting it tommorow . Got a call from Bone Marrow Transplant Dr and they want to get me approved for a clinical Study of Adcetris (SGN35) for Relapse HL. Well this morning I go see the oncologist and she was constantly saying "IF" it get approved and then went into if not then they will try MOPP and that I will never be cured and they will prolong my life ( Almost wish I never asked some questions ) I went crazy.

    I just wanted to come on here and update everyone

    Another thing I got a call from City of Hope saying I have an Infusion next friday. I hope that means it got approved

    that is hard to hear
    I hope you get approved, that is some harsh news to deal with, try to stay positive, keep us updated.... Vinny
  • anliperez915
    anliperez915 Member Posts: 770
    #11
    diazr1 said:

    Update
    Need another BMB will be getting it tommorow . Got a call from Bone Marrow Transplant Dr and they want to get me approved for a clinical Study of Adcetris (SGN35) for Relapse HL. Well this morning I go see the oncologist and she was constantly saying "IF" it get approved and then went into if not then they will try MOPP and that I will never be cured and they will prolong my life ( Almost wish I never asked some questions ) I went crazy.

    I just wanted to come on here and update everyone

    Another thing I got a call from City of Hope saying I have an Infusion next friday. I hope that means it got approved

    Hi Diaz1
    Hi Diaz1, I wish you the best and hopefully you can get into the clinical trial! Will be crossing my fingers and toes for you, Good Luck!

    Sincerely,
    Liz
  • diazr1
    diazr1 Member Posts: 101
    #12
    anliperez915 said:

    Hi Diaz1
    Hi Diaz1, I wish you the best and hopefully you can get into the clinical trial! Will be crossing my fingers and toes for you, Good Luck!

    Sincerely,
    Liz

    Thanks All
    just completed BMB # 8 or 9 lost count .... Ill update all soon
  • Susy28
    Susy28 Member Posts: 18
    #13
    Prayers
    I'm praying for you my friend. Don't lose the faith and please keep us updated.

    Susy
  • diazr1
    diazr1 Member Posts: 101
    #14
    Susy28 said:

    Prayers
    I'm praying for you my friend. Don't lose the faith and please keep us updated.

    Susy

    Got the call
    Its back . But turns on this is the 2nd relapse not third. Makes it easier to handle for some reason . Got approved on Clinical Stufy and will be starting soon at City Of Hope
  • diazr1
    diazr1 Member Posts: 101
    #15
    Susy28 said:

    Prayers
    I'm praying for you my friend. Don't lose the faith and please keep us updated.

    Susy

    Got the call
    Its back . But turns on this is the 2nd relapse not 3rd. Makes it easier to handle for some reason . Got approved on Clinical Stufy and will be starting soon at City Of Hope
  • diazr1
    diazr1 Member Posts: 101
    #16
    Susy28 said:

    Prayers
    I'm praying for you my friend. Don't lose the faith and please keep us updated.

    Susy

    Got the call
    Its back . But turns on this is the 2nd relapse not 3rd. Makes it easier to handle for some reason . Got approved on Clinical Stufy and will be starting soon at City Of Hope
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #17
    diazr1 said:

    Got the call
    Its back . But turns on this is the 2nd relapse not 3rd. Makes it easier to handle for some reason . Got approved on Clinical Stufy and will be starting soon at City Of Hope

    So sorry...
    Hi diazr1,
    I'm so sorry it has come back, but very happy to hear you are approved for the clinical study/trial! I am reading good things about clinical trials , so stay hopeful and keep positive thoughts...(as best as possible). I like the name of your hospital/clinic.."City of Hope"...sounds good to me! Best wishes and thank you for getting back to us...be sure to let us know how things go for you. Sue (FNHL-2-3A-6/10)
  • diazr1
    diazr1 Member Posts: 101
    #18
    allmost60 said:

    So sorry...
    Hi diazr1,
    I'm so sorry it has come back, but very happy to hear you are approved for the clinical study/trial! I am reading good things about clinical trials , so stay hopeful and keep positive thoughts...(as best as possible). I like the name of your hospital/clinic.."City of Hope"...sounds good to me! Best wishes and thank you for getting back to us...be sure to let us know how things go for you. Sue (FNHL-2-3A-6/10)

    Cotinue to be positive
    Cotinue to have the postive thoughts and I was more prepared to get the news I was treating it like it was back since the "suspicious" call. Anyone interested it will be SGN35 that I will be given
  • diazr1
    diazr1 Member Posts: 101
    #19
    diazr1 said:

    Cotinue to be positive
    Cotinue to have the postive thoughts and I was more prepared to get the news I was treating it like it was back since the "suspicious" call. Anyone interested it will be SGN35 that I will be given

    Start Adcetris or SGN35 on 04/06
    Just updating everyone
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #20
    diazr1 said:

    Start Adcetris or SGN35 on 04/06
    Just updating everyone

    update
    thanks for the update, I wish you well, keep fighting... Vinny
  • cathyp
    cathyp Member Posts: 376 Member
    #21
    diazr1 said:

    Cotinue to be positive
    Cotinue to have the postive thoughts and I was more prepared to get the news I was treating it like it was back since the "suspicious" call. Anyone interested it will be SGN35 that I will be given

    Good Luck
    I've heard such promising results with SGN35. Best wishes to you.
    Cathy

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