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Patients Cutaneous T-cell lymphoma
Newly diagnosed - What should I expect?
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Courtney_J
Community managerGood advisor
@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
ERLCA92
@O-livia what is your diagnosis? I had Hodgkin’s lymphoma. I finished chemotherapy in February
O-livia
@ERLCA92 Thank you for responding. I have Hodgkin's lymphoma as well
ERLCA92
@O-livia it sucks! 😔 have they told you your staging? Have you had a PET scan yet?
O-livia
@ERLCA92 Not yet, I just had the biopsy. I'm schedulled for the PET-CT scan next week 😔
ERLCA92
@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 ❤️
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O-livia
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.