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

Hi @krystalrosen, thank you for sharing with us. I'm sorry to hear you're having a hard time with symptoms and getting the answers you need. Do you know what type of CD you have? Don't hesitate to ask any questions you have here and I'll tag some other members who can possibly share with you.

Hi everyone, how are you doing?

Are any of you seeing Dr. Matthew Streetly for your CD? Can you share any advice or support with Krystal? What would you like to have known after you were diagnosed? Did you have any trouble getting answers to your questions?

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Don't hesitate to share with us here, we're all here to support one another!

Take care,

Courtney

@krystalrosen I have a consultation every six months with Dr Streetley but no treatment. Because of its position its not possible to operate on my mass, nor can they do radiotherapy and I dont feel unwell enough for any low level chemo. However if I become worse in between consultations I am free to phone his secretary for further help. You dont say what your symptoms are but have you discussed them with him at a consultation yet?

I had a node from my neck removed in November and a pet scan on Christmas Eve showed another in my groin, I have inflammatory polyarthropathy and a brain tumour also. I saw dr Streetly in January and he was supposed to discuss my case with the mdt team, apparently that’s now happening next week as I’m “complex!”

As the days go on I’m feeling more and more sick, if I’m not being sick. I’m smothered in a rash, can’t wear a bra because of pain across my back and the exhaustion is unreal!

guess I’m just searching for light at the end of a long tunnel

I'm so very sorry to hear of your distressing symptoms and know how difficult the waiting for answers from the MDT team can be.

Maybe you could ring his secretary and ask for a call from him? This may put your mind at rest a little?

If you are not already aware there are a couple of Facebook groups related to CD and it seems many people get comfort from sharing and talking through their similar experiences.

I'm sorry I can't help you further but wish you all the very best and hope you hear very quickly after next week's meeting

hi there i know what you are saying as at first i was in and out of hospital with infection and kidney problems and all the other stuff that comes with castlmans was in a coma for a month then woke unable to walk talk eat or even drink then after a few more months 4 i got home but still no diagnosis so become really sick again and back into ICU then this time someone after many many many tests and biopsy i was told i had multicentric castlmans and as it was so wide spread to operate on i would be put onto a drug called sultuxamab which i will recieve every 3 weeks and i can tell you its like night and day now i feel good most days and even fantastic at points all of this in the past 3 years so i myself am still new to this so im shareing this as to try help and show there is some light at the end of the tunnel so i hope you get the right help and god bless

@Dhagggart

can I ask are you UK based? Sorry to hear you have been really poorly with it. It’s so difficult isn’t it because it’s something that’s not known about, my gp has never heard of it!

glad to hear treatment is working well for you, that certainly gives me hope

yes im from scotland , and you are right about it being not widely known it took over a year for my diagnosis and i was certain that it was a bad cancer the amount of tests i got was crazy lol nearly every department came to check me out and told me ohh we think its this and then eventually i was told by the great dr campbell that it was castlmans i think i was a bit lucky because she had come across it once before so that was it she told me i will be put on the new drug sultuxamab and i would be up on my feet and feeling better soon so i hope that soon you too will be sorted out with the right treatment and the gp thing i dont deal with mine now really its like you say they dont have a clue about it mine told me i was too complicated so now any problems i call my hospital consultant who has been fantastic and is also learning about it so he then gets in touch with the specialists in london i have been in remission now for about a year infact im going for my latest CTscan today at 3;30 to lok to see if my lymph nodes are still under controle sorry for going on a bit there are not many people i talk to about it so when i get the chance i let it out lol so dont be shy if you want to ask questions ask me anything and i will answer as best as i can ok so you take care and i hope you get sorted soon

if you want my email to ask me questions directly i will be more than happy to help out with anything you are worried about or if you just need to talk dont think twice to get in touch cheers and take care and god bless 🙏

@Dhagggart it’s nice to find someone to talk to! No one quiet understands! I don’t mind exchanging email address, hope your ct scan goes well today x

yes i remember the feeling at first when trying to explain to people what castlmans is always get the answer ohh never heard of it and that was from docs and nurses , i suggest you look into david fajgenbaum he is an american rare disease specialist who got castlmans and fought through it and is now one of the worlds top castlmans specialists and has set up a world wide organisation trying to find a cure he also has a top selling book called chaseing my cure it was him and his team that found the drug im on works for castlmans by keeping your lymph nodes under control anyway hope you feel better and stay safe my email is david.haggart33@gmail.com