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Patients Cutaneous T-cell lymphoma

Newly diagnosed - What should I expect?

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O-livia

16/07/2020 at 17:38

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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Hi, I've just joined this site so I don't really know what I'm doing. I've just been diagnosed and it's all such a nightmare. I'm in utter shock. I'm really scared and I don't know what's next. Can anyone share any advice? I don't know where to turn.

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Courtney_J

Community manager

16/07/2020 at 17:53

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 5 in the Cutaneous T-cell lymphoma Forum

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@O-livia Hello O-livia, thank you for starting this discussion. I'm sorry you're feeling scared, getting a new diagnosis can be stressful, especially when it's cancer. Please know that the Carenity community is here to support you!

Let me tag some members who may be able to share their experience and advice with you.

Hello everyone, how are you doing today? What has your experience been like with lymphoma? What should Olivia expect for the next steps in her cancer journey? Feel free to share here!
@farmgirl‍ @ChrisK‍ @movingon‍ @southseagirl‍ @inlotsofpainagain‍ @jmb0211‍ @sepop36‍ @Jock770‍ @Mitouback‍ @Patrici55‍ @ERLCA92‍ @Gedsbones‍ @Micheleo‍ @Sallyk‍ @Debbie 65‍ @susie8‍

Take care,
Courtney

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Courtney_J, Community Manager, Carenity UK

Newly diagnosed - What should I expect? https://www.carenity.co.uk/forum/cutaneous-tcell-lymphoma/living-with-lymphoma/newly-diagnosed-what-should-i-expect-3595 2020-07-16 17:53:42

ERLCA92

16/07/2020 at 18:08

ERLCA92

Last activity on 03/11/2023 at 08:31

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3 comments posted | 3 in the Cutaneous T-cell lymphoma Forum

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@O-livia what is your diagnosis? I had Hodgkin’s lymphoma. I finished chemotherapy in February

Newly diagnosed - What should I expect? https://www.carenity.co.uk/forum/cutaneous-tcell-lymphoma/living-with-lymphoma/newly-diagnosed-what-should-i-expect-3595 2020-07-16 18:08:40

O-livia

16/07/2020 at 18:35

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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@ERLCA92 Thank you for responding. I have Hodgkin's lymphoma as well

Newly diagnosed - What should I expect? https://www.carenity.co.uk/forum/cutaneous-tcell-lymphoma/living-with-lymphoma/newly-diagnosed-what-should-i-expect-3595 2020-07-16 18:35:55

ERLCA92

17/07/2020 at 10:03

ERLCA92

Last activity on 03/11/2023 at 08:31

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3 comments posted | 3 in the Cutaneous T-cell lymphoma Forum

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@O-livia‍ it sucks! 😔 have they told you your staging? Have you had a PET scan yet?

Newly diagnosed - What should I expect? https://www.carenity.co.uk/forum/cutaneous-tcell-lymphoma/living-with-lymphoma/newly-diagnosed-what-should-i-expect-3595 2020-07-17 10:03:34

O-livia

17/07/2020 at 11:11

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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@ERLCA92 Not yet, I just had the biopsy. I'm schedulled for the PET-CT scan next week 😔

Newly diagnosed - What should I expect? https://www.carenity.co.uk/forum/cutaneous-tcell-lymphoma/living-with-lymphoma/newly-diagnosed-what-should-i-expect-3595 2020-07-17 11:11:45

ERLCA92

17/07/2020 at 15:22

ERLCA92

Last activity on 03/11/2023 at 08:31

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3 comments posted | 3 in the Cutaneous T-cell lymphoma Forum

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@O-livia‍ once you have your PET scan you’ll know more about the treatment you’ll have. have you had many symptoms? Don’t worry too much about the staging - Hodgkin’s is considered advanced more to do with the symptoms you have. You’ll be staged 1,2,3 or 4 and then given a letter a or b. A - means you have no symptoms. B - means you do.

likely that you’ll have ABVD chemotherapy. That’s the standard one they start with. It’s difficult I’m not going to lie but just take one day at a time. I needed 12 over 6 months because mine was advanced and I was very symptomatic.

Don’t let anyone tell you how to cope with it. Everyone’s experience is different.
if you have any questions I’m happy to answer them ❤️

Newly diagnosed - What should I expect? https://www.carenity.co.uk/forum/cutaneous-tcell-lymphoma/living-with-lymphoma/newly-diagnosed-what-should-i-expect-3595 2020-07-17 15:22:26

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