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Patients Cutaneous T-cell lymphoma
What is your lymphoma diagnosis story? Let's share!
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O-livia
O-livia
Last activity on 10/01/2023 at 00:41
Joined in 2020
10 comments posted | 8 in the Cutaneous T-cell lymphoma Forum
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@Courtney_J Hi, I've just joined so I'm new to all of this. I've just been diagnosed. I'd been having swollen lymph nodes in my neck and underarms plus fever and fatigue. My GP and I thought it was mono until I started itching. I'm in utter shock about the whole thing and don't know what's next for me. If anyone has any advice for me I'm open.
YorkshireJayne
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YorkshireJayne
Last activity on 15/11/2024 at 07:36
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93 comments posted | 5 in the Cutaneous T-cell lymphoma Forum
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I was diagnosed with non-hodgkin's follicular lymphoma in March this year, completely by accident, after a fast track referral for gastric problems in January.
I have no symptoms as such, so it was a complete shock to be told that a CT scan/barium meal scan had shown enlarged lymph nodes, needing an urgent biopsy. That biopsy turned out to be stage 3A NHFL, which was such a shock. I still don't really have symptoms other than feeling a little more tired than usual and night sweats, but no treatment as yet because even though the cancer is widespread, the symptoms I have aren't a major factor.
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YorkshireJayne
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YorkshireJayne
Last activity on 15/11/2024 at 07:36
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93 comments posted | 5 in the Cutaneous T-cell lymphoma Forum
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@O-livia Hello! I see that no-one has replied to you, even though it's over a year since you posted it!
I was diagnosed with non-hodgkin's follicular lymphoma in March this year, it's such a shock, you're right!
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Life is for living, do it, no matter what!
O-livia
O-livia
Last activity on 10/01/2023 at 00:41
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10 comments posted | 8 in the Cutaneous T-cell lymphoma Forum
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@YorkshireJayne Hi there, it's nice to hear from someone new, this group is a little quiet. That's good that despite how spread yours is it doesn't affect you too much. Very lucky that you had some stomach issues I guess if they were able find the lymphoma!
YorkshireJayne
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YorkshireJayne
Last activity on 15/11/2024 at 07:36
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93 comments posted | 5 in the Cutaneous T-cell lymphoma Forum
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@O-livia hi Olivia, yes I was extremely lucky to have it caught so early on. It’s a slow grower, so I might not even need treatment, ever. But we shall see… for now, I’m living each day as it comes and enjoying life! I’m 62 in December and got a lot of living to do!
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GinaLymph
GinaLymph
Last activity on 13/12/2021 at 16:47
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3 comments posted | 2 in the Cutaneous T-cell lymphoma Forum
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Hi there, I just found this site today. I was also diagnosed with follicular lymphoma after having no real symptoms besides unexplained weight loss and nightsweats I had assumed were just part of aging. For now we're "watching and waiting" since it's slow growing but I thought I would join on here to get some insight from others. @YorkshireJayne keeping my fingers crossed that I won't need treatment either!
YorkshireJayne
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YorkshireJayne
Last activity on 15/11/2024 at 07:36
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93 comments posted | 5 in the Cutaneous T-cell lymphoma Forum
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@GinaLymph Good to meet you! I, too, have night sweats, which I put down to age, but they're completely different to the ones I have with the menopause. I'm also on the active monitoring or watch and wait, which in the beginning was scary, but now that I have my head around things (as it were), sort of, I know that I can contact the haematology team with any worries or changes I have in between hospital check-ups. I'm due my second appointment soon and have to mention the sweats are getting worse, but nothing else worth mentioning. It's certainly weird knowing that you have cancer and nothing is really being done about it isn't it?
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Courtney_J
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Courtney_J
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Last activity on 13/10/2022 at 16:47
Joined in 2020
1,280 comments posted | 5 in the Cutaneous T-cell lymphoma Forum
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Hello everyone,
How are you today?
I thought I would create this discussion so we can all get to know one another better!
So, what is your lymphoma diagnosis story? Do you have Hodgkin's or non-Hodgkin's lymphoma? When and how were you diagnosed? What symptoms were you having that let you know something was wrong? What treatments have you undergone? How are you doing today?
@ERLCA92 @Gedsbones @Micheleo @Sallyk @susie8 @Debbie 65 @Davidpryce @Kather @Beamer @Steve#10 @Alexander1 @lynn4brett @valeriavanden @Gloden @JillWakelam @Straw1971 @Roadein @Sarahm5 @Chellewakeling
Feel free to share your story with us here!
And if you haven't seen it already, a member from Carenity US just recently shared his story with us in a testimonial! You can read it here:
Hodgkin's Lymphoma: Staying Active and Positive Through Treatment
Take care,
Courtney