I’ve recently completed R-Chop for diffuse large b-cell lymphoma and waiting to see my consultant heamotolgist on 7th April . She rang to say the treatment had worked but I’m experiencing lots of side effects which will be discussed but I’m struggling .

Hi Alison Ali D 25           and a warm welcome to the Community and sorry to hear about your Lymphoma rollercoaster.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but I have been on my Lymphoma journey for over 25+ years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell NHL was presenting.

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

You have completed the first 2/3rds of your journey…. The first 1/3rd was your diagnosis with the second 1/3rd being your treatment….. the final 1/3rd is the recovery.

My Consultant told me that going through the treatment process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months to this point in time….. and this was done without any training.

Think about doing the London Marathon and boxing Mike Tyson without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality.

Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.

What types of treatment ‘left-overs’ have you? 

Hi Mike, thank you for your kind reply. I don’t understand what type of treatment leftovers mean. 
Alison

…… basically the post treatment side-effects you are left with.

Tiredness (I’m trying to pace myself).

Out of breath and trouble getting a deep breath,

peri neuropathy.
Back pains which they say are muscular as nothing else showed on the pet scan. 

Just feeling really blah. 

oh my goodness you have been on a long journey and are very knowledgable.
I must admit I thought people bounce back. I haven’t google anything during my diagnosis I was too scared, so just relied on what the consultant first said. I will be glad once I get to see her.

Yes unfortunately my story is long and complicated but I am still here living a great life…….. as.for your side-effects I can only relate back to my experience.

Breathlessness can be down to a number of reasons like low low red blood cells (Anemia), infections or as simple as stress.

If you are having significant breathlessness you may need to get checked out…. 7th April is a long way away so I would try and talk with your team or at least talk with your GP or even call 111 and talk this through.

Unfortunately Peripheral Neuropathy is a ‘Pain’…… even although you are finished treatment the effects of chemo can go on for a good period of time……. But given time this clears up. Due to my long aggressive treatment it took a good 18 months for my PN clear up.

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 highlights the post treatment milestones. 

Yes you are thank goodness. You have a wealth of lived knowledge and I’m eternally grateful to you for your kind quick and informative reply, it really has helped.

i will read the paper after treatment finishes. 

It’s really good to talk to someone who understands. 
Would it be ok to stay in touch with you?

Alison

Once you read through the paper a few times do get back to me with your thoughts about it.