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multiple nodules ... dx with rare disease


Ceff

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First of all, I have to express my gratitude to Katie and all of you at this wonderful board. I have found so much strength here and been inspired by everyone's support and positive attitude. You don't know how much it has helped me!

I had multiple nodules show up on my CT scan--in both lungs & all lobes, along with linear scarring. Some nodules are fibrotic, some are ground glass nodules, one has spiculated margins, and there is an area of lucency in my mediastinal area that looks like inflammation.

Last week I had a lymph node in my upper thigh (inguinal) taken out and biopsied. I've had enlarged (upper range) lymph nodes for a few years now, but I was asymptomatic, so doctors weren't concerned.

The lab report came back saying the lymph node had a proliferation of plasma cells consistent with Castleman's Disease, a rare disorder of the lymph system.

It's a benign disorder, but the more serious version of the disease (called Multicentric Castleman's Disease [MCD]) is systemic and can behave in a malignant manner. I seem to have this more serious form.

The stats are rather scary--with MCD 50% die within 2-1/2 years of diagnosis. But I learned from all of you to say "phooey!" to the stats, I'm going to do what it takes to beat this thing!

Symptoms are similar to lymphoma--low-grade fever, night sweats, malaise, fatigue, itching, hives, etc.

Treatment ranges from steroids, chemo, antivirals, to new experimental drugs.

My doctor is still trying to figure everything out, but I think my pulmonary nodules are caused by a form of plasma cell interstitial pneumonia that is causing inflammation and scarring on my lungs. An upper GI endoscopy also found cell infiltrates in my stomach lining, causing gastritis.

For many years now I've had weird medical ailments, aches & pains. I felt like a hypochondriac, yet they would always find something wrong.

Anyway, I thought some of you in the nodule club and others of you who were so kind to provide encouragement & support would be interested in finding out my diagnosis.

Thanks again to all of you!

Carole

p.s. I saw a post from Bibala last week, a user name I recognized from a pet board where I "met" Libby/Addie. She was a wonderful person, I looked up her posts here and laughed and cried as I read through them. I will carry her in my heart, along with all of you.

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We are always here if you want or need or whatever. Sending prayers and good wishes. Keep us posted if we can help with anything just ask. OK?

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Hi Ceff ~

I'm sorry you didn't get better news with your dx. I don't know much about Castleman's, though I recall reading about it in my own multiple nodules searches. I hope they will find the "magic bullet" that works for you! Thanks for coming to update us, and I hope & pray you'll soon be feeling better.

I've been thinking about Addie, lately. She was a dear soul, and her upbeat "Addie"tude is truly missed!

Yours in HOPE!!

Stacey

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Carole,

I'm glad you posted an update and have some answers finally. Although they aren't the ones we all hoped for.

Please know that I will keep you in my thoughts and pray for your recovery. You are right about the stats- hold onto hope.

MCD- (50%) 1 out of 2 isn't alot

but 500,000 out of a million is a heck of alot.

If you must think of the stats, try to think of it that way, remember that knowledge is power and attitude is everything.

Hugs,

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Hi Carole.

Glad you found us and Addie's spirit here. She was quite a fun friend. We all miss her.

Fibrosis is no fun. Had some bouts of it myself that eroded my lung capacity. Steroids seemed to help. (yuck on the steroids/God bless the steroids)

Good luck with your disease. It must feel somewhat lonely to be running in such a small pack. We, lc kids, we have a whole bunch to run with.

Cindi o'h

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