Non Hodgkin DLBCL, 3rd relapse after autologous stem cell transplant

Janscaper
Janscaper Member Posts: 1
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My husband just learned that his Lymphoma has returned after being in remission for 23 months after his Autologous stem cell transplant.  He has 2 small tumors, one adrenal and one on his hip joint.  When first diagnosed he had a tumor wrapped around his bile duct and it was staged at "4".  He did R-Chop chemo and it returned after 2 months.  The 2nd relapse, cancer was found in his central nervous system, in the spine.  A stem cell transplant was recommended as first line treatment.  My husband is 59 and in good health otherwise.  We are being treated at MD Anderson in Houston, TX.  This time, we were excited to hear that the newly FDA approved CAR-T cell therapy was an option recommended for 3rd relapse patients.  The Dr. warned that the side effects are significant and they lose 5% of patients to complications.  They have also offered a clinical trial called Hu5F9-G4 and would like to work in tandem with finding a donor for an Allogenic transplant.  After going through the 1st transplant, I am worried about him going through another one, I understant the Allogenic is much tougher.    I'm wondering if anyone here has experiended a 3rd relapse with NH DLBCL and what your experience was.

thank you

Comments

  • po18guy
    po18guy Member Posts: 1,500 Member
    #2
    Sorry to hear this...

    Have had a T-Cell Lymphoma relapse twice, but no relapse after allo transplant. CAR-T is the way to go and it is not simply one treatment. There are various companies and facilities offering their own versions, so some online research is warranted. Prepping for transplant in parallel is an excellent idea. 

    As to transplants, (generally) autos are harder going into and easier coming out of, while allogeneic are easier going into and harder coming out of. As to age, I had my allogeneic at 63 after 7 years of constant treatment, so it is very doable.

    I would want the best pathology team in the nation looking at his latest biopsy sample, to make absolutely certain that it is the same lymphoma. This disease tends to transform or morph. Mine did at second relapse.

  • DJS628
    DJS628 Member Posts: 77
    #3
    Good Luck to Hubby

    Jan,

     

    I'm sorry to hear about your husband relapsing yet again.  I had Diffuse Large B-Cell Lymphoma in Sept 2015.  I had the usual R-CHOP, then radiation.  I was in remission for 2 mos shy of 2 years, when it decided to come back in July 2017.  I again had R-Chop, then was sent to Seattle for an autologous stem cell transplant.  I had the transplant the first week of Jan. 2018.  I again was in remission, but it came back last Sept.  This time, I had only radiation & went back to Seattle to discuss my next options.

    I am still in remission (grateful to have made it to my 60th birthday on June 28th!).  Oncologists are telling me I have a high chance of it coming back & the only option I have at this time would be the CAR T-Cell Immunotherapy.

    Good luck, best wishes to your hubby.  I will keep him in my thoughts and prayers that the CAR T works well for him and without too many side effects.

     

    Keep us posted as others may want to chime in and learn about CAR T treatment also.  We are a good support group on here.

     

    Take care and yes, another biopsy is good to have done since some lymphomas tend to morph into another kind.  Poguy has been a member on this site for some time now and knows alot about cancers and treatments.  He's a big help on here.

    Take Care,

     

    Debbie

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