Daughter diagnosed

Do you know her sub-type? 

Mine was diffuse large B cell lymphoma.  I also had R-CHOP as well as high dose methotrexate.

For the 6 months after chemo ends, her immune system will still be a bit fragile and she we continue to take oral prophylactic drugs to prevent opportunistic infections.  Assuming she's in remission, she can do anything she was doing before, although she may find it takes a while to regain her fitness.

Hi. Hers is exactly the same subtype as you. Thanks for info. She is considering taking a year out after A levels. She was planning on going to dance school but was worried she wouldn't regain her strength back before audition season. Hope you're feeling ok.

I've been in remission for almost two years now. Covid lockdowns meant that I wasn't able to do much during that time, so I'm trying to make the most of it now they're over.

Hi Greensilver and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I understand the challenges of this journey well.

Good to see Lolie picking up on your post as it’s encouraging when you can talk with folks who had the exact type of NHL. DLBCL is one of the many types of Lymphoma (There are over 60) that the aim of treatment is to cure or for some give long periods of remission.

As I said, i have an incurable type so I have relapsed multiple times over my 23 years but I am now 6 years 8 months out from my last treatment, in remission and this is the longest period of remission I have had as until Sep 2016 I only ever had 9 months remission before moving onto my next treatment......... but I am living as normal a life that any 66 year old can…… I was a ladder cutting down shrubs in the garden for the last two days doing about 12000 step each day.... So your daughters age and type of NHL will see her slowly bounce back, she should expect a full recovery and go on to fulfil her dreams.

At the moment I am not aware of anyone in the group your daughters age or parents in the same position.

To widen your search for support and more specifically to connect with other parents who are in the same position you may want to look at the various Lymphoma Action Support Platforms. Lymphoma Action is the UKs main Lymphoma Support charity and I have talked with many families in the support groups who are supporting their teens and young adults through treatment and out the other end.

Regaining her strength will take time but the fact that she is doing two dance classes a week is amazing…… I was in a wheelchair after my last treatment - go her. My journey is completely different due to the nature of the treatment I had to have over my years (see my profile by hitting my community name) but like many on here there are lots of encouragement in that even during the dark challenging time…… ‘life’ returns.and as I said she has age on her side to bounce back.

The group is always around to chat and support as best as we can.

Your daughter might benefit from attending a Look Good, Feel Better workshop.  I think these are still being held virtually at the moment but they are held world-wide and they are run with a small group of peers (so a teenager will be in a small group of teenagers).

The workshops are totally free of charge and I cannot praise the programme enough.

lookgoodfeelbetter.org/

The Maggie's center in Glasgow behind the Beatson hospital holds them , face to face , I was at 1 a group of about 8 ladies and 2 trained beauty consultants , had a fab time , highly recommend it 

Thanks for your reply and support. Glad to hear you've been in remission for several years now. She is strong and has youth on her side, I guess I'm just upset about how her future has changed and her dreams have been put on hold somewhat but I'm also optimistic that she'll have a new different future and we'll all have to embrace it.

Thanks. Her support worker said there was something like this available soon. I think she'd enjoy it. She's happy to embrace anything new so will see what is available. X

Hi Greensilver, sorry to read about your daughter, I had dlbc stage 4b back in 2009 and had 8 cycles of rchop, I am now classed as cured and some these days are hearing those words much soon than I did as things have progressed since then. At this stage the best advice I can offer is there is no reason why with time to recover she cannot go on and fulfil her dreams. How we recover and how long it takes varies from person to person but she will recover and will find her way to deal with all of this. So take heart from the knowledge that people recover and then are cured. 

John 

Thanks for the support. It's good to hear that people do get through this. She's over half way through treatment and did 3 dance classes this week. She's a star.

X