diffuse large b cell primary mediastinal

khatf
khatf Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi,

My husband (40 yrs old) is battling dlbc primarily mediastinal NHL. He has gone through 6 treatments of chop + rituxan and appears to have a complete response. He goes back to the doctor for a PET scan and an MRI in late May. Is there anyone out there with a similar diagnosis? Would you share your experience?

Thank you!

Kim

Comments

  • autumn64
    autumn64 Member Posts: 13
    #2
    Hi met you in chat last night, user mc2001 has a website http://www.geocities.com/leukemia_lymphoma/ it has a wealth of information. Perhaps it will be helpful to you. Lana1103
  • pamr
    pamr Member Posts: 5
    #3
    My husband ws diagnosed with resistant NHL in the same area. He had some chest pain, but no other symptoms. Went through 6 CHOP with Rituxan, and the tumor only shrank a bit, not enough to help. Went to two other cancer centers. One said 2 treatments of ICe, then a stem cell transplant, the other suggested a BMT. No siblings matched, so they decided to try ESHAP then stem cell. ESHAP can be tough on the kidneys, and since my husband donated his one to me, they finally went with ICE to see if more reduction would occur. He is now getting radiation treatments. Hopefully that will help. To get back to your situation, BMT seems to get good results, and they are making tremendous differences. Hope all goes well.
    Best of luck!
    Pam
  • Stickboy
    Stickboy Member Posts: 4
    #4
    Kim,

    I am 35 and had a mediastinal mass in my chest (approx 9 inches across). I have been in remission since Nov 25, 2003.

    I made an online journal about my experience here:
    http://www.lymphomaniacs.org/scase/

    Maybe that will help you out. Stay positive!

    Shan
  • daftmf
    daftmf Member Posts: 4
    #5
    Stickboy said:

    Kim,

    I am 35 and had a mediastinal mass in my chest (approx 9 inches across). I have been in remission since Nov 25, 2003.

    I made an online journal about my experience here:
    http://www.lymphomaniacs.org/scase/

    Maybe that will help you out. Stay positive!

    Shan

    I am 45 and also had a mass in my chest (12 inches across) I have been in remission since June 2003. Recently I have experienced some difficulties in using my left leg. Anyone with similar problems. I thought maybe it was some kind of after effect from radiation?
  • slinaresholz
    slinaresholz Member Posts: 1
    #6
    autumn64 said:

    Hi met you in chat last night, user mc2001 has a website http://www.geocities.com/leukemia_lymphoma/ it has a wealth of information. Perhaps it will be helpful to you. Lana1103

    hello to you lana1103.. Hope you are well and still a part of this website. I had a lower lung lobectomy which was half the right lung removed two months ago. I wanted to ask you if you had pain for a long time and if you had numbness etc. Did your breathing ever get better? How long did it take to recover from surgery? I may not be as lucky as you were because during the surgery they discovered that my cancer had affected the mediastum as well. Hope you can answer or anyone else. It would be appreciated.
  • serangels
    serangels Member Posts: 10
    #7
    slinaresholz said:

    hello to you lana1103.. Hope you are well and still a part of this website. I had a lower lung lobectomy which was half the right lung removed two months ago. I wanted to ask you if you had pain for a long time and if you had numbness etc. Did your breathing ever get better? How long did it take to recover from surgery? I may not be as lucky as you were because during the surgery they discovered that my cancer had affected the mediastum as well. Hope you can answer or anyone else. It would be appreciated.

    hi - my name is Susan and I had large b-cell lymphoma, stage 4 left lung and had the lower part of my lung removed. I had a pleural effusion after surgery and had difficulty breathing - it never has resolved completely and I can't do a lot of things that I used to could, I feel like I have a continuous tight band around the left side of my chest just under my breast, and pain at the site where I had the chest tube. My doctor said that I have a lot of scar tissue and that I would just have to learn to live with the pain that it probably would never go away. Sorry you are having problems, but it is nice to hear someone knows how you feel. If you ever need to talk you can e-mail me at serangels@yahoo.com

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