Stage 4 Hodgkins Lymphoma

Hi Wooburn and a warm welcome to this corner of the Community although I am sorry to see you joining 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 was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

I am so glad to hear that you got through your treatment and it did the job for you.

Positive stories are a great encouragement to people who are just embarking on their journeys.

Always around to chat.

Hi thanks for replying. I hope my journey can give hope to others. It’s only now that I realise the enormity of what I went through. When you’re in it, you’re in it. 18 months on, cancer free and getting on with life, I feel now that my mental health has suffered but I didn’t realise. I prefer the simple things in life more now. There was no big party when I was given the all clear. I just got on with life. I think I’m in shock to be honest. Feels weird when you don’t have those hospital appointments, chemo, scans etc. hope that makes sense 

The weird feelings post treatment is real…. Between late 2013 and late 2015 I had a total of 92 nights in 2 different hospital due to my chemo, radiotherapy and 3 Allograft (Donor) Stem Cell Transplants…..

I have also been back in hospital post my last treatment in Oct 2025…… 7 times a total of 38 nights with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Neutropenic Sepsis, A Fib, and a heart attack (See my story)

…….. but I am 9 years out from my last treatment and turned 69 back in November and I am living a great.…….. there is life post treatments but it does take time and some patients.

Hi Wooburn 

I also was diagnosed with stage 4 Hodgkin Lymphoma back in 2020 I was 40 years old after my PET scan I was riddled lungs bone marrow kidneys spleen my whole torso was like a Christmas tree 6 months of treatment of ABVD every 2 weeks after 3 months 2nd PET scan I was CLEAR free of Cancer I’m about to be signed off my 5 years are up but it will never leave me CANCER WE SURVIVED IT GOD BLESS ALL THE BEST ️

Also WOOBURN you need positivity family friends people who love you and rally for you when things like this happens the support we get MAKES US BURY the thing TRYING TO KILL US 18 months after my chemotherapy HOW ILL NEVER KNOW TO THIS DAY ITS A GIFT I BELIEVE IT TO BE I DO I I HAD THE GREATEST GIFT GIVEN TO US THE BIRTH OF MY DAUGHTER 18 months after chemotherapy but at the start of treatment you want to freeze my you know I said no don’t want kids ME HAVING CANCER GAVE ME MY LITTLE PRINCESS like I said you MUST STAY POSITIVE ALWAYS ALWAYS ️

We FIGHT IT TOGETHER ️

Hi Gizzy82 and I see it’s your first post on the community so welcome to the group (I see that you have not actually joined the group, joining helps you connect better - just click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group)

It is wonderful to hear about your journey and your daughter, over my many years on this journey there have been many posts about having children post treatment… without going through the egg freezing process. ….treasure your princess

Are you in the UK Gizzy82 ?

Hi , I’m waiting to hear back as I was told I have a hodgson lymphoma type cancer but need more tests to confirm staging , I’m terrified I’m going to die and don’t really understand staging , keep thinking my family are being taken away from me and my gorgeous grandchildren because of cancer , I’ve been told it’s very treatable but I’m so worried I can’t eat , sleep , feel like there is a dark cloud over me 

Hi Yolanda64 and a warm welcome to the Group.

In the early days of a Lymphoma diagnosis it can be very confusing and scary but understand your Hodgkin's Lymphoma better makes a difference.

Lymphoma is very treatable….. I have been in my journey with my 2 types of Lymphoma for over 25 years now…. I turned 69 last Nov and I continue to live a great life.

Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not…… I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

Getting clear information at appointments can help a lot so these 2 link below will help you….

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Hi, well done for reaching out at this very worrying time for you. My oncologist told me that Hodgkin Lymphoma is very treatable. Get your tests done then your oncologist will tell you exactly what it is and the treatment for it. Your feelings are valid x