Newly diagnosed: Can you share any advice?

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Patients Castleman disease

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Posted on

Hi everyone, 

I've joined this group because my cousin was just diagnosed today with a severe form of Castleman after what they had thought was lymphoma. We're all in shock. He's only 18! He's been in hospital for weeks and his treatment starts tomorrow.

The doctors haven't been very forthcoming and really we all feel like we're in the dark about this, so can anyone who has this or knows someone who has shed a little light on what it's like? We really don't know where to turn

Thank you all so much xx

Beginning of the discussion - 17/02/2021

Newly diagnosed: Can you share any advice?

• Community manager
Posted on

Hello @Mina145‍, thank you for opening this discussion. I'm sorry to hear about your cousin, getting a rare and severe diagnosis can be stressful for both the patient and the family. Let me tag some other members who can possibly share with you:

Hi everyone, how are you doing? Can anyone share their experience with Castleman? What was your diagnosis and hospital experience like? Is there anything you would have liked to have known at diagnosis? 
@PennyLane‍ ‍@Jurdie@Caski33@Sashvin@Sarahjane79@friedegg@LukeIan@RhettB‍ 

Don't be shy, your stories and experiences are precious!

Take care,
Courtey

Newly diagnosed: Can you share any advice?


Posted on

@Mina145 I know exactly how you feel. My family has been in your shoes before too. Don't be afraid to ask questions both to your cousin's medical team and to patients groups like this one and ones you may find on Facebook or other sites. I know it's scary and overwhelming, so for us talking to other patients that have been through has been so helpful. How is his treatment going?

Newly diagnosed: Can you share any advice?


Posted on

@RhettB Thank you so much, that means a lot to me. We're trying to take things one day at a time. For now he's in treatment and we're hoping and praying that it helps. I've read all the articles on here and I'm glad to have joined this group. 

Physically he's not feeling well from the treatment they've got him on and mentally... he's getting there. It's a lot to process, especially when you're young like him. 

Newly diagnosed: Can you share any advice?


Posted on

hi there i know i have also been there i was in an indused coma for 4 weeks and in ICU  for near 5 months when i first went into hospital due to my kidneys failing and i was full of fluid i also got pneumonia so after treatment and lots of dialysis i got discharged but something was still not right , so it wasnt until the second time i got rushed to hospital with sepsis they done lots of test and kept comeing back with no answers until one day a wounderful doc who had dealt with one other with castlemans heard of my case and come to visit me she then ordered a biopsy and found out i had castlemans , that was near 4 years maby 3 but now after being treated with siltuxamab every 3 weeks  i am now in remission i had just turned 40 when i got diagnosed it was hard at first but now i feel good, so good luck and i hope you find the right treatment that works , god bless 

Newly diagnosed: Can you share any advice?


Posted on

@Dhagggart Thank you for the encouragement. Wow it sounds like you've really been through it. So they found out you had it kind of by chance?  That must have been a shock! I'm glad you're doing better now

Newly diagnosed: Can you share any advice?


Posted on

@Mina145 Just by you being there for him will really do so much good. A lot of people tend to 'disappear' when someone gets sick, so it's good to know you have someone who's there for you through it all. I don't know what treatment your cousin is having, but so many of the treatments for CD and lymphoma and similar disease are truly hell, so anything you and your family can do to make him comfortable will surely be appreciated.

Newly diagnosed: Can you share any advice?


Posted on

thank you and yes i was in and out of hospital a few times really sick so they tested for everything i was actually told it was diffrent things then they would come back and say no sorry need more test but we got there in the end and now im on sultuxamab and doing pretty good so far , touch wood, so hopefully now your cousin has been diagnosed he can get the right treatment for him and get back feeling as normal as poss. there is light at the end of the tunnel, i wish him well and good luck, for me at first i never thought i was ever gonna feel ok again i was unable to walk for months i had to learn all that again and learn to eat and even talk it was really tough and frustrating so to let you know this week alone i have been out on my bike and food shopping plus i was out cutting the grass this may not sound like much  to the normal  person but for me its huge , im telling you this to let you know if and when he finds the right treatment things can get alot better for everyone , again good luck and god bless 

david h 

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