What is your Castleman story?

@PennyLane hello I hope your further on and receiving treatment now and it’s a success from reading others your symptoms sound the most similar to my own . Can you please tell me what type of CD you actually have and how do they determine that.

@Pibby22 so happy to hear you are getting treatment and it’s making you feel better can you tell me how you are now ? Also how did they determine the  mulicentric CD I’m so new to this I don’t know the name of the other type . Do you know what is deemed the worst one to have ?

with my very best wishes 

@Hender65 Hi,I have been on Siltuximab for 9 cycles at 3 weeks intervals,am feeling great,I had a biopsy of lymph nodes in my chest.My doctor got me on a        free trial of Siltuximab for 12 months as here in Australia it’s not on the free script and would cost $100,000 a year.Hopefully it will get on It this year.Stay safe.

@Pibby22 Hi & thank you for your speedy response I’m delighted for you that your treatment that you are currently in receipt of is working for you & that you are getting it free for 12 months. Wow the price is astronomical but no matter the country nobody should be denied a medication that is proven to save their lives. Is it a lifetime of treatment?  or does it actually cure the CD? 

with my very best wishes 

@Hender65 Hi ,I will be on Siltuximab for the rest of my life,,IMCD is not cureable but controllable . I am 78 years old, hope I have more good years to go. What treatment are you on? hope it’s working for. you .Regards

@Pibby22 hi I haven’t been told what strain of CD I have yet only been told I have castlemans disease. I have just recovered from throat cancer and am having 6 weekly follow up appointments . In December I had a pet scan and it showed activity in my neck in my lymph nodes. They naturally assumed it was a recurrence of the cancer and I was advised to know for sure the only option was an operation to remove them. Ordinarily to save money they remove both sides at the same time but that would have meant I had no swallow for the rest of my life. My consultant agreed to do one side only for now. After a biopsy I was delighted to hear that it’s not cancer at all. So had a few happy weeks until I was called back to be told I am the only person in the world to have throat cancer and now castlemans disease. Not something I’m happy being famous for. So I have been referred to a haematologist that’s now weeks and I have no appointment yet. It doesn’t help that his secretary took 3.5 weeks to write the letter as he dictated it on the day that he seen me.

 Thanks for your response.

@Hender65 Sorry I missed your message. I've been offline for a while. I also have IMCD. I think they can definitively tell you with a biopsy, but generally you have MCD when multiple lymph nodes are affected. Have you been able to see the haematologist?

I had a ct scan in April for something totally unrelated, it showed a mass that appeared to be on my Overy. I had every scan and blood test you can imagine. I had surgery in June, I was told when I woke up that it was not my Overy it was a lymph node and that it was possible it was lymphoma. I then had to wait until September to be told on the phone that it was castlemans disease and nothing to worry about and that I'm cured "whoop whoop" roll on end of September and I get a hospital appointment letter for oncology. I went yesterday to be told that I could get it again and it depends on how many infections I get. I asked what to look out for and was told lumps. I didn't have a lump in the first place, which I told him and he repliled"oh well". 

In the mean time I've been suffering with pins and needles in my fingers and toes that goes into a burning feeling. I suffer badly with night sweats. I tried to tell my GP who hadn't heard of castlemans and then got told that I was wasting her time. Who do I go to?

Hi everyone,

How are we doing today?

I want to tag a few of our newer members and invite them to share their Castelman story.

@JillAK @Paola00 @Tormod @ImeldaLong @krystalrosen @sophiesbarro @Bumble88 @Beastie @EvaLally @Carfee87 @Leah1405 @Ikeaaron77

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?

Please share your experiences!

Take care,

Lizzi