Patients Castleman disease

Castleman’s disease in the UK: What are your advices?

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krystalrosen

10/02/2022 at 22:34

krystalrosen

Last activity on 29/04/2022 at 19:14

Joined in 2022

6 comments posted | 5 in the Castleman disease Forum

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I’m new here! Just wondering and looking for help really, I was diagnosed with Castlemans in December after a lymph node biopsy, I seem to be struggling to get any answers on treatment for this and my symptoms are getting worse.

is there anyone else in the Uk that’s under dr Streetly and actually received treatment?!

im feeling very lost and scared!

many thanks in advance

krystal

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friedegg

23/02/2022 at 18:14

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friedegg

Last activity on 21/10/2022 at 02:54

Joined in 2020

17 comments posted | 15 in the Castleman disease Forum

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@krystalrosen I understand very well that feeling of being completely lost or abandoned. I hope you get the answers you're looking for.

@Dhagggart how did you CT scan go?

Castleman’s disease in the UK: What are your advices? https://www.carenity.co.uk/forum/castleman-disease/living-with-castleman-disease/castlemans-disease-in-the-uk-4527 2022-02-23 18:14:59

Dhagggart

26/02/2022 at 16:03

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Dhagggart

Last activity on 01/09/2024 at 15:29

Joined in 2021

18 comments posted | 14 in the Castleman disease Forum

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my ct scan went good thanks still in remission so the sultuxamab is still doing me good altho everytime i get the scan my eyes swell up and really sting for a few days but its worth it , how are things going for you ?@friedegg hope you are doing ok , and @krystalrosen hope you are doing ok and you can get the answers and treatment soon , god bless and take care and good luck i pray you get the right treatment so you can get back to feeling human again

Castleman’s disease in the UK: What are your advices? https://www.carenity.co.uk/forum/castleman-disease/living-with-castleman-disease/castlemans-disease-in-the-uk-4527 2022-02-26 16:03:31

krystalrosen

03/03/2022 at 20:18

krystalrosen

Last activity on 29/04/2022 at 19:14

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6 comments posted | 5 in the Castleman disease Forum

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I’m waiting on another pet scan, there’s something in my colon that needs investigation now too. I’ve been put on Prednisolone now but as of yet symptoms are the same! Hope you are feeling well

Castleman’s disease in the UK: What are your advices? https://www.carenity.co.uk/forum/castleman-disease/living-with-castleman-disease/castlemans-disease-in-the-uk-4527 2022-03-03 20:18:56

Dhagggart

04/03/2022 at 17:23

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Dhagggart

Last activity on 01/09/2024 at 15:29

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18 comments posted | 14 in the Castleman disease Forum

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@krystalrosen i hope you get some news about treatment after your pet scan, ohh prednisolone i was on them for a while at a high dose and i have to say they did help alot but im very happy to be off them as they are so strong, god bless and i hope you get answers soon

Castleman’s disease in the UK: What are your advices? https://www.carenity.co.uk/forum/castleman-disease/living-with-castleman-disease/castlemans-disease-in-the-uk-4527 2022-03-04 17:23:30

Castleman’s disease in the UK: What are your advices?

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