Primary Mediastinal B cell Lymphoma

Hi Ladies PB and a warm welcome to this corner of the Community although I am sorry to hear about the journey your daughter and indeed you have been on. I am Mike and I help out around our various Lymphoma groups.

I don’t have primary mediastinal large B-cell lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Relapse Is always a worry as there is no certainties with cancer....... but the further out she gets from her last treatment the better her chances are that she will not relapse..... but even if she did there are some great treatment on the shelf that will do the job.

As I said, my type of NHL is incurable and over my first 16 years I only ever reached partial-remission...... the longest being about 9 months so I had to continually go back on treatments....... but my last treatment was back in Oct 2015 and I remain in remission to this day.... and I am living a great life...... so this can be done. The one choice that all my family have made is that we will not let the 'what if's?' define us........... we define how we live and get on and live it to the full....... we will deal with the future problems 'if' they come along.

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it will help you understand the post treatment milestones that your daughter will have to navigate.

As for specific support for yourself and indeed you daughter you may want to have a look at the Support Platforms that Lymphoma Action provide for both for patients and family........ I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.

Always around to help more or just to chat.

I had this also - well mine was actually classified as grey zone lymphoma also as it was a mix of Hodgkin and Non Hodgkin Lymphoma.  I was diagnosed with stage 4 in September 2020.  I had RCHOP chemo through to December and a course of radiotherapy and have been in remission since Spring 2021. It is a worry, but get your daughter to speak to her haematologist about keeping regular  check ups for peace of mind. It’s a long journey, physically and emotionally.  At first you cant plan any more than a week ahead, but after a while you start to be able to plan more further ahead and begin to relax and enjoy life again. All the best. 

Thanks for your prompt response. She has lots of support, I think it’s me that’s struggling, obviously wanting the best for her but worried. 
It’s great to hear your positive story though. 
thank you 

Hi, I’m just starting chemo for this and have had my first session. The fatigue, nausea and pain are something I wonder how I’m going to manage for another 5 sessions. 
im so glad you’re daughter is free from this now but like you my mum has really taken it badly. I hope you start to see her flourish and it gets easier to believe she will be ok

Thanks so much for this and you are so brave. Hang in there. My daughter managed her chemo every two weeks for 6 sessions. It’s tough but you can do it. Please keep in touch and let me know how you get on.

Not sure what your situation is but I hope your mum is ok. Give love from me and support each other X

Yes mine is Rchop 14 so maybe the same as your daughter. I’m 46, single with 2 adult children living away from home. 
After going through this chemo your daughter is now ready for her best life. Enjoy every minute of it together x 

Hi, I’m 35 years old and also diagnosed with primary mediastinal lymphoma last year October. Initially I was told to go through the RChop chemo treatment but it was changed to R-EPOCH later. So after five cycles of R-EPOCH now, I’m fighting a bacteria infection (pseudomonas) before my last cycle. I do wonder the same thing, what’s my future going to be like? How likely will i stay healthy and cancer free? An emotional wreck is what I am. I can only hope (?) life will continue normally and I can promise to work out more often.. glad to hear your daughter had the all clear. I wish her all the best and hope to get the same good news in the months to come.  

Hi. Thank you for your message and kind words for my daughter. 
I also hope that you recover soon and can get on with your life. I guess for all of us, life will never be the same, but it’s about taking each day as it comes and doing the best we can. I still find it difficult to accept that my daughter has had Cancer, but we don’t have any choice unfortunately. I hope you have support around you and can use that to your advantage as much as possible. Also try and keep your lines of communication open with others and try not to push them away. You may find local Cancer groups supportive, though they aren’t for everyone. Maggies centres are very good and obviously MacMillan. 
Do let me know how you get on. Best wishes Lady P

Well, my daughters PMBC Lymphoma cancer has grown back again in the same place. 
She is being prepped for CAR T. Has anyone here got any experiences of this?
I hear it could be a game changer, though not necessarily. Any comments out there gratefully received. 

Hi Ladies PB I am sorry to hear about your daughter’s relapse….. unfortunately it can happen….. I have been there also.

There have been a few people on the community who have gone on to successfully have CAR-T and are getting on with life let’s see if they are still looking on.

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

They also have a great Buddy Service where your daughter could be connected with someone who has walked the same treatment journey.