Intravascular B Cell Non-Hodgkins Lymphoma

StayStrong23
StayStrong23 Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I was wondering if anyone has any experience with Intravascular B Cell Lymphoma? My Dad was recently diagnosed with this very rare, aggressive sub-type of NHL. Apparently it's so rare that it is usually found post-mortem so we are so grateful for the doctors who didn't give up until they found out what was really going on.

He has had his first R-CHOP cycle and will be receiving 5 more. He will also be receiving 3 Methotrexate infusions in between. The doctors are not giving him a very good prognosis but I am hoping to find others who have dealt with this type of NHL to see what their experiences have been. And also to see what other treatments have been tried. Any information would be greatly appreciated!

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    Sorry....
    Hi,
    I cannot help you with your question and don't know anything about the kind of cancer your dad has. You might try posting your question on the Rare cancer forum here at CSN(under Discussion)...maybe you will find others that are dealing with the same type. I wish your father the best and you are welcome to come here anytime for support. We may not have answers to your questions, but we do know how scary the situation is and can relate 100%. Take care and I'll keep you and your father in my prayers. Sue
    (Follicular-NHL-Grade2-stage3-typeA-diagnosed June 2010-age 61)
  • jimwins
    jimwins Member Posts: 2,107
    #3
    I did a search
    Hi StayStrong,

    I found this doing a search through the lymphoma board.
    I only found one discussion with "Intravascular B Cell Lymphoma"
    in the text.

    Unfortunately the topic dates to Dec 2003 and the last post
    was in 2009 by rockfam. You might try reaching rockfam but
    can't guarantee you'l will get a response.

    Intravascular B Cell Lymphoma

    Hugs,

    Jim
  • myawesomedad
    myawesomedad Member Posts: 1
    #4
    My dad was also diagnosed with the same type
    Hello StayStrong23,

    I know it has been a couple months since you posted this message, but I want to let you know that I am experiencing the same situation here. My dad was diagnosed with stage 4 Intravascular B-Cell lymphoma a month ago.
    This lymphoma is so rare that even the in-charge nurse who has been worked in the hermatology unit for 30 years has never heard about this. In fact, I think his doctor is only one in the world is willing to give him a prognosis. A doctor, who used to work in Harvard, told us that most doctors never see this type of lymphoma.
    My dad undergoes Hyper-CVAD. He just completed his 2nd cycle.

    I hope your dad is in CR right now,and it will be great if we can share experiences. I am very scared about my dad's situation after reading stuffs from google.
  • caregiver1829
    caregiver1829 Member Posts: 51
    #5
    myawesomedad said:

    My dad was also diagnosed with the same type
    Hello StayStrong23,

    I know it has been a couple months since you posted this message, but I want to let you know that I am experiencing the same situation here. My dad was diagnosed with stage 4 Intravascular B-Cell lymphoma a month ago.
    This lymphoma is so rare that even the in-charge nurse who has been worked in the hermatology unit for 30 years has never heard about this. In fact, I think his doctor is only one in the world is willing to give him a prognosis. A doctor, who used to work in Harvard, told us that most doctors never see this type of lymphoma.
    My dad undergoes Hyper-CVAD. He just completed his 2nd cycle.

    I hope your dad is in CR right now,and it will be great if we can share experiences. I am very scared about my dad's situation after reading stuffs from google.

    big B cell
    hi there;
    have faith in GOD and your DOCTORS.. ask them about the NEW drug TREANDA which they have in the last year started offering for lymphomias.. what i have read on u=tube there is a lot of favorable results with this drug..
    we waiting to have a biopsy next week to see what has came back for the 3rd time and how bad.
    my wife had a blood stem cell transplant n dec 10 which worked for a year or so.. thats a very trying procedure to go thru.. anytime they take your wbc count down to .1, thats next to dead, its going to be an experence..
    good luck and my prayers and thoughts are with you.. caregiver..
  • caregiver1829
    caregiver1829 Member Posts: 51
    #6
    allmost60 said:

    Sorry....
    Hi,
    I cannot help you with your question and don't know anything about the kind of cancer your dad has. You might try posting your question on the Rare cancer forum here at CSN(under Discussion)...maybe you will find others that are dealing with the same type. I wish your father the best and you are welcome to come here anytime for support. We may not have answers to your questions, but we do know how scary the situation is and can relate 100%. Take care and I'll keep you and your father in my prayers. Sue
    (Follicular-NHL-Grade2-stage3-typeA-diagnosed June 2010-age 61)

    remission
    sue; are you n remission? what kind of chemo have they used on u?? Im tryn to talk to patients that have used TREANDA drug that just released in the usa in the last year.. it sounds like its a promising path to take..
    like i said in the other blog, we going to have a biopsy taken next week to see what is back and what stage it is in..
    you sound like a real nice couple and does help having been there to relate.. what we ve found out is how fast friends and family think everything is hunky dory when you appear to being doing better..
    have a nice day and keep up the good work.. caregiver..
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #7
    caregiver1829 said:

    remission
    sue; are you n remission? what kind of chemo have they used on u?? Im tryn to talk to patients that have used TREANDA drug that just released in the usa in the last year.. it sounds like its a promising path to take..
    like i said in the other blog, we going to have a biopsy taken next week to see what is back and what stage it is in..
    you sound like a real nice couple and does help having been there to relate.. what we ve found out is how fast friends and family think everything is hunky dory when you appear to being doing better..
    have a nice day and keep up the good work.. caregiver..

    treatment...
    Hi caregiver,
    I had CVP-R (cyclophosphimide-Vincristine-Prednisone and Rituxan)for 6 rounds, which I finished in Dec of 2010. Started Rituxan maint, once every 2 months on Feb 14th 2011. I just started my second year of Rituxan maint on Feb 14th again this year. Mine is a 2 year maint schedule unless something new shows up before I'm finished. I'm scheduled for my yearly scan on March 27th to see if the Rituxan has been doing it's job...I sure hope it has!!! To answer your question about remission...No...I did not reach remission, but was considered stable upon finishing chemo. All of my tumors had shrunk to acceptable size,( below centimeter).. except for one pesky tumor in the clavical area. I had tumors in my groin, abdomen and neck...no bone marrow involvement...hence stage 3 diagnosis. My Onc felt the Rituxan maint would keep everything in check, so we will soon find out after my scan. I feel good and my blood work always comes back good, so I'm thinking I'm probably in remission by now. So far our friends and family still understand the full extent of what my cancer diagnosis consists of and all have stayed very loyal and helpful from day one. I'm so sorry if you have not had the same experience. One thing you can count on is the family you have here. They have been the most wonderful supportive group of friends anyone could ask for. Stick with us and you will see how beneficial this support group will be for you too. I wish you the best on the treatment decision you end up going with, and please share back what you decide to do. Take care...Sue (FNHL-2-3A-6/10)
  • miss maggie
    miss maggie Member Posts: 929
    #8
    allmost60 said:

    treatment...
    Hi caregiver,
    I had CVP-R (cyclophosphimide-Vincristine-Prednisone and Rituxan)for 6 rounds, which I finished in Dec of 2010. Started Rituxan maint, once every 2 months on Feb 14th 2011. I just started my second year of Rituxan maint on Feb 14th again this year. Mine is a 2 year maint schedule unless something new shows up before I'm finished. I'm scheduled for my yearly scan on March 27th to see if the Rituxan has been doing it's job...I sure hope it has!!! To answer your question about remission...No...I did not reach remission, but was considered stable upon finishing chemo. All of my tumors had shrunk to acceptable size,( below centimeter).. except for one pesky tumor in the clavical area. I had tumors in my groin, abdomen and neck...no bone marrow involvement...hence stage 3 diagnosis. My Onc felt the Rituxan maint would keep everything in check, so we will soon find out after my scan. I feel good and my blood work always comes back good, so I'm thinking I'm probably in remission by now. So far our friends and family still understand the full extent of what my cancer diagnosis consists of and all have stayed very loyal and helpful from day one. I'm so sorry if you have not had the same experience. One thing you can count on is the family you have here. They have been the most wonderful supportive group of friends anyone could ask for. Stick with us and you will see how beneficial this support group will be for you too. I wish you the best on the treatment decision you end up going with, and please share back what you decide to do. Take care...Sue (FNHL-2-3A-6/10)

    Pet Scan
    Dear Sue,

    March 27 is around the corner. I will pray with you for a remission dx report.
    How true, we all have such wonderful support and love from this group.

    Love to you Sue. Love Maggie
  • Shannie76
    Shannie76 Member Posts: 8
    #9
    My husband has it to
    I have no idea what we are dealing with we just got his biospy results today & they told us B Cell Non Hodgkins Lymphoma...

    Now its time to figure out what were dealing with
  • Mechpharm
    Mechpharm Member Posts: 2
    #10
    myawesomedad said:

    My dad was also diagnosed with the same type
    Hello StayStrong23,

    I know it has been a couple months since you posted this message, but I want to let you know that I am experiencing the same situation here. My dad was diagnosed with stage 4 Intravascular B-Cell lymphoma a month ago.
    This lymphoma is so rare that even the in-charge nurse who has been worked in the hermatology unit for 30 years has never heard about this. In fact, I think his doctor is only one in the world is willing to give him a prognosis. A doctor, who used to work in Harvard, told us that most doctors never see this type of lymphoma.
    My dad undergoes Hyper-CVAD. He just completed his 2nd cycle.

    I hope your dad is in CR right now,and it will be great if we can share experiences. I am very scared about my dad's situation after reading stuffs from google.

    Mom just diagnosed with intravascular lymphoma

    help!  We are going through the same with no one knowing how to treat.  Her oncologist's have even consulted Mayo.  How did things turn out for your dad?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #11
    Mechpharm said:

    Mom just diagnosed with intravascular lymphoma

    help!  We are going through the same with no one knowing how to treat.  Her oncologist's have even consulted Mayo.  How did things turn out for your dad?

    Be aware....

    Mechpharm,

    Welcome, and I'm sorry regarding your mom's recent diagnosis.

    Be aware that you are posting on a thread that last had activity three years ago.  I just don't want you to mistakenly think it rudeness if the parties involved are not monitoring it any longer, and do not respond in a timely manner.

    I have no familariy at all with her strain of the disease, but it is the case sometimes that extremely rare cancers require finding a doctor or center that has dealt with them in the past.  I hope someone who knows specifics about Intarvascular responds soon....

    max

  • epicc
    epicc Member Posts: 137
    #12
    Mechpharm said:

    Mom just diagnosed with intravascular lymphoma

    help!  We are going through the same with no one knowing how to treat.  Her oncologist's have even consulted Mayo.  How did things turn out for your dad?

    Sorry to hear

    My mom was diagnosed with Intravascular Lymphoma.  When I joined the group no one had heard of this.  Very tricky to treat.  I am very sorry, but my mom only lived for 6 months.  She was 81 when diagnosed.  They were able to get the cancer under control, but the chemo was too much for her.  She was treated by Dr. Schuster of Stony Brook Hospital.  If you need any questions answered, feel free to send me a message.     They usually try using R-CHOP.  The chemo works well. 

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