Multicentric Castleman's Disease

[BBaggins06]

I'm sorry to hear about your illness Bella. I hope you get better and feel better soon. How's your kid handling all of this?

[BellaBellucci]

I'm sorry to hear about your illness Bella. I hope you get better and feel better soon. How's your kid handling all of this?

He's aware of the seriousness, but not my odds. I wanted him to know but not be scared to death about it. He was just here for two months and there was just no way to mask the symptoms. I took a LOT of pain meds and made sure to do as many things with him as I could. We did amusement parks (I was dumb enough to go on a wooden coaster - WTF was *I* thinking?), the beach, Griffith Observatory, cookouts, and of course we went shooting, which is always a blast. *rimshot*

He's nervous, but thankfully not terrified. Me? I'm exhausted.

Here's a video of him shooting an AR-15. Believe me. We tried to keep his mind off of my condition and how better for an 11-year-old COD addict?!

https://www.facebook.com/photo.php?v...type=3&theater

~BB~

[youngblood61]

Your experience will hopefully be valuable to anyone intelligent enough to understand the gravity of your situation. I pray for you Bella, that an effective treatment for your circumstances is formulated quickly. You ROCK for putting yourself out there!!

[broncofan]

Thank you for letting us know. I hope that you respond to treatment and that the side effects of your medicines somehow abate. That sounds tough. Best wishes!

[nysprod]

Very sorry to hear about your battle with MCD Bella...wishing you all the best.

[Gillian]

Sorry to hear your news, Bella.

Autoimmune conditions suck. I was diagnosed with sarcoidosis in 2004 and have been on steroids since then and have therefore seen most of the side effects and consequences of long term steroid use.

I'm sure you'll buck any of the depressing statistics ...

[Rusty Eldora]

It's very rare - which is why you've never heard of it. It's hard to even get numbers on it because a) it's not classified as cancer and b) most people who die from it are diagnosed at autopsy due to lack of education about the disease.

http://www.cancer.org/acs/groups/cid...003093-pdf.pdf



That's been the goal. Good days. And one at-a-time.



Thanks for everything. After talking to my friends and family, I decided that I needed to do this. I'd hate to see anyone else get sick because they didn't have the facts.

~BB~

Thank you for bringing this out, it does help everyone. Life can be a real bitch at times and no one deserves a major illness. I'll be thinking of you and hoping you beat this.

[natina]

love that you are being honest and coming forward!

This feels like coming out all over again. It's actually surreal. Although, I'm on a lot of drugs so, you know - pointless philosophical debates with myself over morning coffee, spacing out at meetings, stumbling around because my motor skills are failing - perfectly normal now. Hunter S. Thompson can eat his heart out. In fact, I'd add yet another drug to my regimen to hallucinate that.

I don't have any energy. Despite 2-3 cups of coffee in the morning, a Norco, and a host of vitamins, I usually pass out every afternoon only a couple of hours I wake up, only to wake up to eat dinner and fight to stay awake until my normal bedtime. I live in constant body-wide pain, weakness, dizziness, short breath, trouble concentrating, have lost over 30 pounds, and oh yeah - the loveliest part - I've lost most of my hair to telogen effluvium, which means that it will grow back eventually, but right now I essentially only have one of three phases of hair grown out.

It started with swollen lymph nodes in my right-side groin area last spring. They didn't hurt much and they weren't hard, so I knew I didn't have lymphoma. Naturally, the doctors (yes, plural), knowing that I was trans, assumed it was an STI. Negative tests and two courses of antibiotics later, my primary care doctor didn't know what to tell me. Knowing that a lymph node's reaction after antibiotics can sometimes take months, I thought nothing of it until they started swelling on my left side as well.

Since going to a new doctor starting in January, I have been poked, prodded, made radioactive and scanned, and had my case reviewed by the NIH. Yeah. As in the CDC of non-infectious and rare diseases. After a biopsy, it is nearly conclusive. I expect an official diagnosis next week, but it seems that I have MCD.

What is it, how is it transmitted, and how can you protect yourself? Put most simply, it's a lot like lymphoma except that instead of promoting cancer cell production, Castleman's overproduces white blood cells - so it's autoimmune.
Here's the catch, though: MOST people who get this disease do not get it randomly as I did, but by RIMMING. Yes. Rimming. Humanherpes-virus 8 is in saliva, and is easily absorbed by the anus, and HIV has been largely linked to the disease. The best way to protect yourself is to use condoms, dental dams, and other prophylactics.

Look, MCD is no joke. We're talking a three-year survival rate of 46% - less than 50/50 odds - and they haven't even let me start treatment yet after 16 months. Five years ago, the life expectancy for MCD was only TWO YEARS. Even stranger? My symptoms are about 20 years ahead of schedule for a person not presenting with an STI.

There are treatments that can help me, some which may even put the disease into remission, but most are experimental or new to the market. They could put me on chemo. One treatment, as unthinkable as is seems, is actually THALIDOMIDE. Not pleasant stuff. And then there's the possibility that nothing works. It all depends on the person - and this disease is so rare that there is little data... or moral support... to help them (read: me) sleep at night - but again, I have drugs for that.

So anywho, I hope this post serves the dual-purpose of explaining my absence and educating others about a hidden danger out there in the industry. Sorry to bore you all with my depressing details, but I sort of see an opportunity to help people here, and I've never been one to pass those up - even if no good deed goes unpunished - I SWEAR (LOL)!

I may dedicate a section of my personal website bellabellucci.com to this topic, depending on my energy levels, but I will absolutely answer any questions that I can in the comments. If you'd prefer to send me a private message, you can email me at bellabellucci@ymail.com.

Thanks for reading, everyone!

~BB~

[MrBlonde]

Sorry to hear about your condition and I really do wish and hope for you the best in this horrible problem you are facing. I also really appreciate you sharing your story and knowledge and hopefully it can help educate us all and give us a little pause before our actions. Brave of you! Take care Bella.

[natina]

Multicentric Castleman’s Disease (MCD)
http://immunopaedia.org.za/index.php?id=1001

Siltuximab Injection Sylvant
Siltuximab injection is used to treat multicentric Castleman's disease (MCD; abnormal overgrowth of lymph cells in more than one part of the body that may cause symptoms and may increase the risk of developing a serious infection or cancer) in people who do not have human immunodeficiency virus (HIV) and human herpesvirus-8 (HHV- infection. Siltuximab is in a class of medications called monoclonal antibodies. It works by blocking the action of a natural substance that causes increased growth of lymph cells in people with MCD.

http://www.nlm.nih.gov/medlineplus/d...s/a614028.html