non hodgkins lymphoma stage 4 in the bone marrow

lehya
lehya Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
my husband 68 was diagnosed 3 yrs ago with non hodgkins low grade lymphoma stage 4. He had two chemo treatments the first was standard chemo. the 2nd time his cancer came back the dr. put him on chemo and rotuxin. He has been in remission for over 1yr 1/2 i think. He visits the dr. every 4 months to check for reacurrance. The dr. told me his survival prognosis is 3-5 yrs. I'm looking for a longer survival or a cure for his disease as we are getting closer to that date. He now has Rhenmatoid artheritis in is shoulder and his knee which prevents him from lifting weights. He only swims now. We live is SD. Who speciaizes in this type of cancer? and who can help besides his oncologist which only gives him the treatment and a poor prognosis.

Comments

  • mlockrem
    mlockrem Member Posts: 8
    #2
    I had my treatment at the University Hospital Cancer Center in Denver, My onc is a lymphoma specialist there. you might give it a try good luck
  • lehya
    lehya Member Posts: 3
    #3
    mlockrem said:

    I had my treatment at the University Hospital Cancer Center in Denver, My onc is a lymphoma specialist there. you might give it a try good luck

    thank you for your input. I'm going to send another email on more info i found today regarding non hodgkins lyphoma vacines. pls read it. buy
  • JOHN39
    JOHN39 Member Posts: 9
    #4
    My specialist in Greenville , SC Dr Spitzer specializes in lyphoma nhl. I have nhl grade 1.
    i'm in remission after 8 treatments of chop. Have you checked into stem cell transplant? God Bless John
  • SuzieQZ
    SuzieQZ Member Posts: 3
    #5
    Hi

    My name is Suzie....I have just come home to Maine, after being in San Diego for NHL treatments. I was Stage 4 difused Large B Cell Lymphoma. I received treatments at UCSD under the care of Dr Asad Bashey. I went through a stem cell transplant, and so far seem to be in remission. I am presently receiving Rituxin as a maintenance program. My daughter works for Idec, the company that manufactures Rituxin. I received both Rituxin and CHOP during treatment prior to the transplant. Dr Bashey is wonderful....you can contact him at the Perlman Cancer Center in LaJolla.
  • jacq
    jacq Member Posts: 3
    #6
    SuzieQZ said:

    Hi

    My name is Suzie....I have just come home to Maine, after being in San Diego for NHL treatments. I was Stage 4 difused Large B Cell Lymphoma. I received treatments at UCSD under the care of Dr Asad Bashey. I went through a stem cell transplant, and so far seem to be in remission. I am presently receiving Rituxin as a maintenance program. My daughter works for Idec, the company that manufactures Rituxin. I received both Rituxin and CHOP during treatment prior to the transplant. Dr Bashey is wonderful....you can contact him at the Perlman Cancer Center in LaJolla.

    Suzie, my Mum who is 57 has just been diagnosed with Mantel Cell Lymphoma (one of the many NHL's I'm told). It is in her bone marrow, spleen which is very swollen & lymph glands and she's been told she's at Stage 4. Her Oncologist suggests CHOP to start off with but as my Mum watched her sister (at the age of 39) go through chemo for breast cancer and pass away within 3 months she's very reluctant to start chemo. Do you know of any alternative treatments? I know MCL has a very poor prognonis and I'm not sure if Mum is too old to have the bone marrow transplant. I'm just trying to find out as much information as I can as the doctors aren't telling us very much. From what I have seen so far you must be very brave. You will be in my prayers tonight. Jacq - Melbourne, Australia.
  • sgsorensen
    sgsorensen Member Posts: 1
    #7
    jacq said:

    Suzie, my Mum who is 57 has just been diagnosed with Mantel Cell Lymphoma (one of the many NHL's I'm told). It is in her bone marrow, spleen which is very swollen & lymph glands and she's been told she's at Stage 4. Her Oncologist suggests CHOP to start off with but as my Mum watched her sister (at the age of 39) go through chemo for breast cancer and pass away within 3 months she's very reluctant to start chemo. Do you know of any alternative treatments? I know MCL has a very poor prognonis and I'm not sure if Mum is too old to have the bone marrow transplant. I'm just trying to find out as much information as I can as the doctors aren't telling us very much. From what I have seen so far you must be very brave. You will be in my prayers tonight. Jacq - Melbourne, Australia.

    My partner had stage 4 NHL and underwent 6 cycles of CHOP. Immediately after that, he was hospitalized with a severely enlarged spleen. He underwent a Splenectomy and then 2 weeks later had to have an emergency bowel resection and colostomy. His platelets refused to come up and they did a bone marrow aspiration. The result was that it had infiltrated the bone marrow and we brought him home on hospice care and he died 2 days later. I miss him soooooooo much.
  • anguiacm
    anguiacm Member Posts: 2
    #8
    jacq said:

    Suzie, my Mum who is 57 has just been diagnosed with Mantel Cell Lymphoma (one of the many NHL's I'm told). It is in her bone marrow, spleen which is very swollen & lymph glands and she's been told she's at Stage 4. Her Oncologist suggests CHOP to start off with but as my Mum watched her sister (at the age of 39) go through chemo for breast cancer and pass away within 3 months she's very reluctant to start chemo. Do you know of any alternative treatments? I know MCL has a very poor prognonis and I'm not sure if Mum is too old to have the bone marrow transplant. I'm just trying to find out as much information as I can as the doctors aren't telling us very much. From what I have seen so far you must be very brave. You will be in my prayers tonight. Jacq - Melbourne, Australia.

    Jacq - my father-in-law is 60 and was recently diagnosed with mantel cell lymphoma. He would very much like to talk to others with this. He just started chemo treatments last week. Maybe we can help your mum and my father-in-law communicate with each other. He does have an e-mail address. I'm just trying to help him find others with the same diagnosis.
  • sweetda
    sweetda Member Posts: 6
    #9
    Hi, I was diagnosed last march with NHL. It was in my bone marrow and spleen. My spleen has been removed and Iwent thru 6 months of chemo. As of Oct my bone marrow was clear however they do have me on a preventive plan with Rituxan for the next two years, every six months, once a week for the whole month of March and Sept. Has the dr requested a preventive treatment? I have the indolent lymphoma.
  • rodgerr1
    rodgerr1 Member Posts: 4
    #10
    JOHN39 said:

    My specialist in Greenville , SC Dr Spitzer specializes in lyphoma nhl. I have nhl grade 1.
    i'm in remission after 8 treatments of chop. Have you checked into stem cell transplant? God Bless John

    John, I was just diagnosed with Stage 4 Grade 1 NHL. I meet with Dr. Spitzer today at 12:45 for the 3rd time. We will discuss the trial I qualify for which is Rituxan and Galiximob. The trial is a Phase II trial. I am still asymptomatic and continue to work out at the gym several days per week. I just turned 56 and am otherwise in good health. I am happy to hear that you are in remission. If I do not respond to the trial medication I will then have more aggressive therapy such as CHOP. Can you tell me more about you and where you live in Greenville. I am off Pelham Road in a subdivision called Lexington Place. Would love to talk to you further.
  • Hischild2
    Hischild2 Member Posts: 3
    #11
    Grade 2 stage 4 non-hodgkins lymphoma and in bone marrow

    I am almost 74 was diagnosed a little over 4 months ago.  I get rituxan 1 day and bendeka the next day once a month for three months now. Has anyone out there been thru this? Just wondering if someone has how they responded to it. if in remission?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #12
    Hischild2 said:

    Grade 2 stage 4 non-hodgkins lymphoma and in bone marrow

    I am almost 74 was diagnosed a little over 4 months ago.  I get rituxan 1 day and bendeka the next day once a month for three months now. Has anyone out there been thru this? Just wondering if someone has how they responded to it. if in remission?

    Welcome

    Welcome to you here, hischild.

    I recommend that you start your own, new thread (Discussion Topic), as this one is quite old.  This takes less than a minute: Just go to the list of Lymphoma threads, and the click on "Add New Forum Topic."  No trouble at all.

    Rituxan and Bendamustine (aka 'bendeka") is a popular combination today (often referred to as ""B & R"), mostly used against indolent NHLs like follicular.  I have not used B & R myself, but many here have.

    Please specify what strain (type) of NHL (non-Hodgkin's lymphoma) it is you have, as that will assist people in knowing whether their experience is perhaps related to your own.

    I'm glad you've come here for support,

    max

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