Patients Castleman disease
What is your Castleman story?
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Welcome to your Living with Castleman disease forum here on Carenity! This space is dedicated for you to share your questions, stories, fears, advice, and much more with other members with CD!
As you know, being diagnosed with a chronic illness, especially a rare one, can be a life-changing experience. So let's talk about it together!
How was your diagnosis experience? How long did it take for you to be diagnosed with CD? What were the signs or symptoms that made you feel like something was wrong? How are you doing today?
Feel free to share your story here!
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@Courtney_J Hi, I just found this site so I'm a bit new to this. My brother was diagnosed with Castleman and it was a real shock for us all. It took a long time for him to get a diagnosis since it's so rare. I think he first had fever and extreme fatigue and then enlarged lymph nodes. He went through so many tests and things, I think they went through everything from the flu, to mono, to even lymphoma. I don't think they figured out what it was until they did a biopsy. We're all still just overwhelmed and confused about the whole thing, the doctors didn't really give us any information to go on, so I've found myself here.
@RhettB I just joined as well. Does your brother have multicentric CD? Our stories sound similar. I was diagnosed earlier this year, it was a complete shock. I'd been having flu-like symptoms and swollen lymph nodes and terrible fatigue like your brother, and they also thought it was lymphoma. I agree, the lack of information out there is extraordinary! Most of the things I've found have been on American sites, I haven't really been able to find and UK-based sites. I hope that efforts are being done in the UK to research CD and raise awareness...
Hi Pibby22 here from Australia,I too have just been diagnosed,it took 2 weeks in hospital with every test going, was fatigued and out of breath,only symptoms,had biopsy and one week later had diagnosed,multicentric castlemans desease. Not heard of many patients here.So now my doctor has got me on Siltuximab trial for 6 months,not on our free script here.within 3 days feeling much better,have infusion every three weeks.So just hoping everything keeps going well.
@Pibby22 I didn't have any "obvious" symptoms really either. Just swollen lymph nodes and poor sleeping and the occasional fever. I've just been diagnosed a few weeks ago as well. I took ages for me to get diagnosed, I really had to insist and force my way through the system. Finally after a scan they noticed my liver was enlarged and that kicked things into gear.
Hi, Pibby22 here.I have just had my 5th infusion of Siltuximab,my lymph nodes have gone down,and am feeling almost normal.Doctor is so pleased,and I have had no side effects,so feeling really happy,Hope this helps, Happy New Year to you all.
@Pibby22 That's fantastic you're doing so well! Hope you had a happy Christmas and New Year!
Hi, when I was 18 my glands swelled in my armpit, groin and neck. I went to the doctors and they advised me to get a biopsy on the lymph node in my armpit. I was told that I could potentially have non- Hodgkin lymphoma. Few weeks went by and apparently this lymph node was being looked at by loads of people they didn’t know what it was for sure. Few more weeks passed and they concluded that it was CD. I’ve never actually found out what type I have/had. All I know is that they were happy for me to crack on with my life and that it won’t cause any major symptoms or worries. It’s been 12 years I’m now 29 and still have a few swollen glands they’ve never really grown or shrank since. I’m healthy and normal (I think). Just thought I’d let you know my experience with it. You never know it could cause me complications down the line but as far as I’m aware I’m fine. Hope this helps a little bit with the anxiety etc. Tom
@friedegg So sorry to hear what you are dealing with. There is definitely a ton being done in America to research CD, but the American research being done by an organization called the CDCN consists of a scientific advisory board of doctors from all over the world. My daughter also has CD and the resources and information I was able to get from the CDCN to help/support her in her battle was great. Have you had any success finding a CD specialist near you?
@mjkr1227 Thanks for commenting, sorry for my late reply, I haven't been on in a bit. Yes in my research and in reading articles on here I've come to learn about the CDCN. I'm glad to know they've helped your daughter. Yes fortunately I found a doctor through Cancer Research UK.
@friedegg Hello I’m glad to hear your encouraging news as I’m completely in the wilderness with this. I’ve been told I have castlemans disease and have a copy of a referral letter to a haematologist that took 4 weeks to actually type . It was dictated on the day my other maxi facial professor who I was visiting as a routine after an operation to remove my lymph nodes to one side of my neck. This was for a biopsy to check my stage 4 throat cancer hadn’t returned. Well the good news is it hasn’t but now I have this . Tongue in cheek apparently I should be happier with castlemans disease than a recurrence of the other. Well somehow I don’t feel very lucky at all . This disease is the unknown I to speed things up checked if the haematologist I have yet to meet had a private clinic. But he doesn’t . I am from Glasgow does the specialist you know hold a private clinic my fellow CD . Patient.
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