Recently Diagnosed, Mid Escalated BECOPDac

Hi Latty ROSOLotty   and a warm welcome to this corner of the Macmillan Community but I am sorry to see you hoping us.

I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma but for some context I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 43……. when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.

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 having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015…… and also dealing with Asbestosis for 14 years and just diagnosed with Prostate Cancer a few months back.

Let’s see if any of the HL group members will pick up on your post.

Are you in the UK Latty?

Thank you for your warm welcome and thank you for sharing your story. I am based in the UK, the South of England.

Hi ROSOLotty  

As you will see, this group is on the slow side and this may well be down to the high profile of the UKs main Lymphoma charity  Lymphoma Action.

The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

All the links I use are taken directly from their website and I have volunteered with them about as long as I have with Macmillan……

You may want to widen your support and information base by checking them out

They run various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 6500 members and unfortunately you would most likely bump into me on there also ;)

They also have a great Buddy Service where you can be linked up with someone who has walked the same support/treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Hi Rosolotty. I was diagnosed with Stage 2 mid 2024 (aged 40) and went through 2 rounds of ABVD before being escalated to escBEACOPDac. It was an awful 6 months of treatment but 14minths out from treatment and I’m all but back to normal. I still get tired but I’m able to walk long distances (I travel in to London for work and walk from Marylebone to Green Park to get my steps in). I hope you’re holding up well enough? Bizarrely, I found ABVD the harder to deal with of the two treatments but that’s not saying much at all!!