Primary Mediastinal B cell Lymphoma

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I am mother to my 33 year old daughter who was diagnosed 5 months ago. She has recently been given the all clear after 6 rounds of RCHOP chemotherapy. 
I am obviously delighted for her as it has been an emotional rollercoaster as I’m sure anyone reading this will know.

I am still really worried about the future and of course no one can tell me what that will be. Unfortunately my glass is always half empty and I constantly worry that it will return. If it does, I don’t know what I would do. 
Is the any support out there to help me just try and relax a bit. I do try and shut it out, do lots of exercise, try to distract myself etc etc, but it’s really difficult.Any tips anyone??

  • Thanks for your response. I have messaged due to my own anxieties as my daughters mum. It is me that is still struggling to come to terms with everything, a year on, but I’m grateful for your positivity. I will hold onto that. 

  • I will always say that the journey is just as hard for those looking on than for the person in the bed.

    Do still follow up on the Lymphoma Action links as they do run a few very good online support groups specifically for family, friends and caregivers.

    You can also get you connected up with a family, friend and caregiver buddy.

    It’s always good to talk so you may find the LA helpline a safe place to talk things through and get support. It is open every week day from 10 till 3 on 0808 808 5555.

    There is also a dedicated Family and Friends group on this community….. but it is a general group and not Lymphoma specific ((hugs)).

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Is there anyone on here I can talk to about CAR T? My 33 year old daughter had this yesterday 

  • Hi again  as I said a few weeks back there have been a few people on the community who have gone on to successfully have CAR-T and are getting on with life so let’s see if they are still looking on.

    However I have talked with a good number of people on Lymphoma Actions  Support Platforms who have navigated the exact same CAR-T journey and are also getting on with life.

    But I have had 2 Allo (donor) Stem Cell Transplants so there are some crossovers with SCT and Car-T.

     What’s your questions?

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I am sorry to hear that, how is she doing now?

    May I ask why didnt they opt for DA Epoch as first line of defense?

    And did she have to undergo radiotherapy + RChop?