New phase of NHL for mom: follicular -> B-cell

preciousmom
preciousmom Member Posts: 22
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My mom (71) has been living with follicular lymphoma for about 6 yrs. She’s been treated (rituxin, chemo ie r-chop) and had some remissions. Each remission’s been shorter lived. She had a stem cell transplant about a year ago, but the cancer was back within 6 months. Now with new lumps and bumps, pathology shows it’s diffuse large b-cell. Anybody have a similar experience? I’ll search, but a conversation would be nice. It is so hard to wait until next week to hear what the oncologist thinks. 

Comments

  • Bill1958
    Bill1958 Member Posts: 67
    #2
    Understanding DLBC-NHL but wonder about how quality of life was

    Preciousmom:

    I just got done with my first round of R-CHOP w/ spinal infusion and it is for an agressive lymphoma known as DLBC-NHL(NON Hodgkins Lymphoma) I'm 59.  I believe I had dormant or very slow growing Lymphoma but none of the tests show that so I am agreeing with the doctors.  The treatmens wern't not too bad except for some terrible pain on the first infusion (The R part).  Just tired the 2nd day after all infusions were complete.  I wonder if your mom was able to enjoy life for the 6 years she was living with the follicular lyphoma?  PS:  I do believe this DLBC can be beat and cured!!

  • preciousmom
    preciousmom Member Posts: 22
    #3
    Hi Bill1958

    Yes! She has had and still has good quality of life now. The only treatment that was really bad was the transplant. That’s why this recurrence is particularly hard, coming right on the heals of her recovery from it. I think you are right, there are many good options. Especially for you, since you are young and new to any treatment. 

  • po18guy
    po18guy Member Posts: 1,505 Member
    #4
    If not at one, time to go to an NCI designated facility

    Follicular is also a B-Cell Lymphoma, but is an indolent (slow-growing) variety. A certain percentage of patients do progress/transform into DLBCL. As that is a little more tricky to treat than primary DLBCL, I strongly suggest that mom consult with a hematologist at a National Cancer Institute designated comprehensive cancer center. Best of the best, they conduct research and they have seen and treated about everything.

  • AaronW
    AaronW Member Posts: 45
    #5
    po18guy said:

    If not at one, time to go to an NCI designated facility

    Follicular is also a B-Cell Lymphoma, but is an indolent (slow-growing) variety. A certain percentage of patients do progress/transform into DLBCL. As that is a little more tricky to treat than primary DLBCL, I strongly suggest that mom consult with a hematologist at a National Cancer Institute designated comprehensive cancer center. Best of the best, they conduct research and they have seen and treated about everything.

    R-CHOP

    After almost 8 years of fighting which included 19 rounds of Rituxan...R-CHOP starts Tuesday, March 27. Let's keep in touch and I will post my progress.

    God bless and stay strong.

    Aaron

  • preciousmom
    preciousmom Member Posts: 22
    edited March 2018 #6
    Thank you poguy

    Thankfully mom‘s oncologist is at an NCI center already. However, she’s temporarily being managed remotely while she is away for the winter. I wonder if her oncologist will advise her to come home early. And I dearly hope they didn’t throw away the biopsy sample without reserving some for dna analysis?!

     

     

  • preciousmom
    preciousmom Member Posts: 22
    #7
    Dear Aaron,

    i am wishing you best of luck with r-chop, may it get you a nice long remission.  Let us know how it goes! 

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited March 2018 #8
    preciousmom said:

    Thank you poguy

    Thankfully mom‘s oncologist is at an NCI center already. However, she’s temporarily being managed remotely while she is away for the winter. I wonder if her oncologist will advise her to come home early. And I dearly hope they didn’t throw away the biopsy sample without reserving some for dna analysis?!

     

     

    They keep the samples

    However, fresh biopsies are the best, and cancer is our living cells out of control. Thus, they can and do pick up differing mutations, which might send treatment in another direction. She can stay as long as she wants, but I know that you wil be lobbying her to come back and jump on it. Still, for better or worse, it remains her decision.

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