Multicentric Castleman's Disease

[BellaBellucci]

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~

[jamesedwards]

Well, thanks for the heads up. So you think this is an porn industry thing? I hope you get better.

[BellaBellucci]

Well, thanks for the heads up. So you think this is an porn industry thing? I hope you get better.

Nope. Ironically, this has nothing to do with my experience in the porn industry. My STI slate is absolutely clean. That's what makes my case even that much more rare. The point of my post was to educate others that HHV-8 and/or HIV are generally present in Castleman's patients.

~BB~

[jamesedwards]

Nope. Ironically, this has nothing to do with my experience in the porn industry. My STI slate is absolutely clean. That's what makes my case even that much more rare. The point of my post was to educate others that HHV-8 and/or HIV are generally present in Castleman's patients.

~BB~

Oh ok, thanks for the info.

[jamesedwards]

So do you still talk freaky about fucking to cheer yourself up Bella?

[BellaBellucci]

So do you still talk freaky about fucking to cheer yourself up Bella?

Yep. Especially when I get paid for it. But I'm not here to advertise.

~BB~

PS: MCD does not alter my twisted sense of humor. Js.

[jamesedwards]

Yep. Especially when I get paid for it. But I'm not here to advertise.

~BB~

PS: MCD does not alter my twisted sense of humor. Js.

Ok, cool, good to see you in high spirits.

[youngblood61]

Thanks for the education Bella.

[CORVETTEDUDE]

:rock2Your 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!!:rock2

[maxpower]

I'm glad to see you back, Bella, although I wish the circumstances were more positive. Here's hoping you find a treatment that works well for you.

[ed_jaxon]

I am very sorry to hear that Bella. You are good people, a good mom and don't deserve this.

[francisfkudrow]

I hope you are able to beat the odds. As for it commonly being spread through rimming, I have been thinking that people have been much too lackadaisical about eating random ass these days.

[Prospero]

Bella... you have my sympathy. The condition you detail is shocking and I truly hope the prognosis you mention is not going to b e true for you. All the best

[CaptainPlanet]

Sorry to hear this Bella, i hope a cure if found. How common is this illness? I have never heard of it until today.

[Jericho]

Dammit, I only clicked on the thread because i thought it was an "Australian Lager", piss take...But it's serious!
I'd never heard of it before, and Bella, I'm sorry that i have to hear of it from you.
I hope that you have good days.

[Ecstatic]

Bella, you know my heart goes out to you and I'm here for any support I can offer. Thank you for calling me to tell me about it. I was not going to say anything to anyone until you did. I hope sincerely you have the same positive results my niece who is a breast cancer survivor (completely clear now for 2 years, she's only 33), and another niece who 6 or 7 years ago survived lupus thanks to a stem cell treatment.

As for the impact on the porn industry, the word is caution: although Bella did not acquire MCD through the normal channels (rimming) and is clean of any STI, this does serve to make the point about being careful of suck risky behavior.

[BellaBellucci]

Sorry to hear this Bella, i hope a cure if found. How common is this illness? I have never heard of it until today.

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/documents/webcontent/003093-pdf.pdf


Dammit, I only clicked on the thread because i thought it was an "Australian Lager", piss take...But it's serious!
I'd never heard of it before, and Bella, I'm sorry that i have to hear of it from you.
I hope that you have good days.

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


Bella, you know my heart goes out to you and I'm here for any support I can offer. Thank you for calling me to tell me about it. I was not going to say anything to anyone until you did. I hope sincerely you have the same positive results my niece who is a breast cancer survivor (completely clear now for 2 years, she's only 33), and another niece who 6 or 7 years ago survived lupus thanks to a stem cell treatment.

As for the impact on the porn industry, the word is caution: although Bella did not acquire MCD through the normal channels (rimming) and is clean of any STI, this does serve to make the point about being careful of suck risky behavior.

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~

[wearboots4me]

Hope you feel better, Bella

[maaarc]

your attempt to educate people concerning your illness in a time of great personal stress and hardship shows you to be a remarkable person Bella. I will be praying for your full and speedy recovery.

[BellaBellucci]

Thank you all.

Here's a visual aid on where I'm at right now. I miss my hair so much. *cry*

Don't let this be you.

http://www.hungangels.com/vboard/picture.php?albumid=2451&pictureid=18849

~BB~

[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. :lol:

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?! :lol:

https://www.facebook.com/photo.php?v=672713539474395&set=vb.100002072651104&type=3&theater

~BB~

[youngblood61]

:rock2Your 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!!:rock2:iagree:

[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/documents/webcontent/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-8) 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/druginfo/meds/a614028.html

[BellaBellucci]

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-8) 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/druginfo/meds/a614028.html

I'm aware of Sylvant. The trials look good. It's brand-new, though. Inevitably, I'll either be on this or another IL-6 blocker, and/or maybe chemo.

~BB~

[tsadriana]

Hi Bella ,your a strong caracter and im absolutely right that you will gonna beat this nasty thing....At least your sense of houmor and your strong attitude still there ,wich means you are a fighter...You will gonna beat this for sure...Love and peace x

[giovanni_hotel]

DAMN Bella!!

I was not expecting this from your return post. Keep fighting.

Why have I never heard of this disease before, and do you have any idea how you were exposed to it???

I feel like I just got kicked in the head.

[BellaBellucci]

Hi Bella ,your a strong caracter and im absolutely right that you will gonna beat this nasty thing....At least your sense of houmor and your strong attitude still there ,wich means you are a fighter...You will gonna beat this for sure...Love and peace x

Thank you, love. :)


DAMN Bella!!

I was not expecting this from your return post. Keep fighting.

Why have I never heard of this disease before, and do you have any idea how you were exposed to it???

I feel like I just got kicked in the head.

You've never heard of it because it's just that rare. And no, they have no idea how I got it. I have a few suspicious, but they're not medically validated - I've gone from living on adrenaline to relative calm in my life (stress response), or maybe it's genetic since I know I've had waves of these symptoms for years before my diagnosis.

~BB~

[fred41]

I'm sorry life threw you this curve Bella.
Especially something so out of the blue...and so devastating.
You'll beat it though...you've shown yourself to be pretty determined.
You have my best wishes...I hope you are comfortable..and I hope you beat this thing.
I'm sure you will.

...and , Damn...I hope there's a silver lining in all this for you... somewhere.

[livepersona]

Where you doing the rimming or getting rimmed? And can you get it by both?

[BellaBellucci]

Where you doing the rimming or getting rimmed? And can you get it by both?

OMG! :lol:

Again - *I* didn't get it from rimming, but when it is transmitted that way, the recipient is the partner at risk.

~BB~

[Bobby Domino]

I don't mean to rehash this for others on the forum but I've been away for a while and was curious about Bella and what she was up to.

Really sad & shocked to hear, Bella. I can't say more than what others have said only that I hope you beat this thing and that the treatments they're giving you slow it down so you can regain a normal life. Thank you for your courage and honesty. You're a wonderful, curious person and a loving mom.

It's always been a pleasure to talk to you and discuss your perverse naughty imaginations. I hope you get better soon so we can have you back

A thousand kisses and a million hugs, love. :kiss:

[BellaBellucci]

Thanks again, everyone... especially Bobby. That was one of the most compassionate things anyone has said to me since this whole thing started. I know I'm supposed to be the tough chick and all that, but that doesn't mean that I (or really anyone else for that matter) want to endure this while surrounded by callous people. And believe me, there have been plenty.

<3 you guys!

~BB~

[Ms.Stepford]

I'm sorry to hear this, and I wish the best for you, but thank you for the awareness.