Newly Diagnosed Stage 4 Hodgkins Lymphoma

Newly diagnosed with Stage 4 Hodgkins Lymphoma. Start 1st Chemo Fri 10th Feb, 12 sessions over 6 months. Only went to the dr with a cough and a wheeze. Still don’t feel ill. If I hadn’t of gone last sept the consultant said I would be dead in the next 6 months. Scary to hear. Ready to start and get on with this and get better.

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Hi @Bev1 welcome and thanks for posting.
Yes, those words must have been so scary to hear, I was also diagnosed by a gynaecologist.
As you say you are ready to start and get on with it and get better.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and you are now part of our forum family.
We might all have different diagnosis but many of us share similar thoughts, feelings and practicalities.
Look after yourself

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Sorry to hear that @Bev1 - my story was similar - silent Hodgkins discovered almost accidentally when looking for something else, didn’t really feel particularly ill.

It’s great that you have a positive attitude going into this. Of course, there will be some tough times ahead, but just keep focussing on life after treatment. I’m now 3 years the other side of treatment, in full remission and putting it all behind me now.

Stay positive, and just shout if you have any Hodgkins specific questions and I, and others on here, will try and help.

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Hi @Bev1,
A really warm welcome to our forum. I’m glad you’ve found us and hope we can all be a support to you.
I am so sorry to hear about your diagnosis, this must have been quite the shock.

How are you feeling now you have a treatment plan in place?

I wanted to let you know that should you ever need to talk anything through- our support service team is on hand 7 days a week- Blood cancer information and support by phone and email | Blood Cancer UK.

Also in case it is helpful in any way we hold multiple booklets that you can order for free online via our online shop.
This booklet in particular is a good resource for when someone is first diagnosed- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop.

Wishing you the very best for your first chemo this Friday and again please don’t hesitate to contact us for anything at all.

Take Care, Lauran

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Hi @muppet,
A huge welcome to the forum & thank you for offering such brilliant support. I hope you are doing okay?
It is great to hear that you are in remission now from Hodgkin’s and have some positivity & hope to spread from the other side.

Also know that our phone line is here for anyone affected by blood cancer- including those many years in remission- 0808 2080 888.

Best Wishes, Lauran

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A warm welcome to the forum although I bet you wish you were never here.
I also was diagnosed out of the blue with Non Hodgkin Lymphoma. That was five years ago. This time five years ago I was right were you are just about to begin my treatment I too thought my world had been turned upside down.
It’s hard to see it now but there will be light at the end of the tunnel but there will be. Take each day as it comes. Be kind to yourself. Find something you like to do. I found a passion for yoga it really helped me get through both physically and emotionally.
I have a recipe for treatment which was drink lots of water, walk for 30 minutes in the fresh air and do a little yoga or stretching. I swore by it every day.
Please do let us know how you are doing we are all here for you. There is light at the end of the tunnel, we are all stronger than we think and you got this. :muscle:

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Hi @bev1
I was similar in that I didn’t know I was ill but had some B symptoms but it was the start of the pandemic and I thought it may be anxiety. I was diagnosed with stage 4 HL but it was then downgraded to stage 2. It was a shock but my consultant said it was very curable. The 6 months of chemo wore me out and I hated losing my hair but it actually went by quickly . We even managed a couple of holidays in the UK which made me feel more ‘normal’. I then had 15 sessions of radiotherapy and have since had checkups every 3 months. I’m so relieved to have got through the treatment but I do still worry about it reoccurring. Hopefully this will wane over time. It does feel a bit like it happened to someone else at times and I think the worst thing was telling my family. You will have had your first chemo by now so I hope it went well and you don’t feel too exhausted. It’s amazing how many people have blood cancers and I although I don’t post much I do find reading peoples experiences on here very helpful. Good luck with your treatment and be kind to yourself .

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Great to hear from you @Mimi and this forum is all about sharing our experiences and supporting each other which you have really done.
Worry that your condition will re-occur sounds very natural to me.
Yes, losing one’s hair is such a visual thing and part of our identities.
I also think telling people really brings our diagnosis to reality.
Look after yourself

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