Today My Oncologist told me he was fairly certain I have sarcoidosis

Hi everyone,

After years of not feeling right and for the past year I have had a bizarre symptom of chills(without fever) and feeling cold.. I was referred to a hematologist/oncologist to check my slightly elevated wbc count. They ordered up a full body ct which showed multiple enlarged lymph nodes in the groin, underarm and chest. Ct also showed lung scarring and I think the doctor said lung nodules.
I went in for a biopsy of my enlarged lymph node under the arm that showed infection.

Just some of the symptoms I have suffered for the past 5 years are
1. Vertigo and some dizziness
2. Feeling Tired
3. Appetite comes and goes.
4 Just not feeling "right"
5 Fast heartrate.

He is sending me to a pulmonary specialist. I have had no breathing problems and no cough but I suppose with the scarring on the lungs they have to do some more tests maybe. The doctor mentioned going on prednisone to help with any symptoms
Do most people get the weight gain and round face with the prednisone?

My question is.. Do people have normal lifespans with pulmonary sarcoidosis ?
My oncologist said he didn't think I would have to do anymore invasive testing.. but I am worried that I will now have to do a lung biopsy.
Also, I have worked in a dental lab and I wonder if any chemicals there could have caused my sarcoidosis

Any feedback is greatly appreciated
Thanks,
Michael

By IreneMarie
Posted November 4, 2009 at 2:45 am
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No cause is known yet. Can be strongly genetic, none of us comes with tag with expiration date. Though there is no known cure finding sites like this one helps advance the victom's knowledge so that we may make educated infiormed lifestyle and treatment choices based on common threads, similsr responses and common outcomes.
A good teamtoassemble is Rheumatologist (specialist in aut immune disease and it's pain management) Endocrnologist to evaluate all glands and hormone levels ad to ultra sound your thyroid and other glands if need be based on lab results, An excellent opthalmologist/retinaolgist is crucial for yearly evals (if not more often) when you have Sarc. A cardiologist to monitor the heart arrhythmias whch may also cause SOB and chest tightness.
An excellent PCP will allow the team leader who often is the Rheumatologist to manage your Sarc the PCP monitors blood sugar, cholesterol, b/p and pulse and all the rest that an internist does.
All Sarc meds are potent and come with a gammet of side effects, some of which may be worse than the disease, If you have granuloma then the best med for shutting them down quickly is Prednsione. Your Rheumie should be well versed in which labs will indicate the level of activity of your disease and able to clearly explain your options. If you are not emergent or in agony you can consider other slower acting drugs besides Predinson usually the first drug of choice it seems. Many others don't have as nasty side effects but take wks-mos to get to a therapeutic level. But then you will not suffer the wt. gain, moonface and azillion other nasty things, Plus you will never have to suffer through coming off Pred (a real nightmare for many of us), Some of the best meds are rarely approved by insurance plans because of the expense. If I had it to do over I would beg for Humira which is usually denied but you can inject yourself at home vs a wkly 3hr infusion of Remicade in the doc's office,but here again - no hair loss. no wt, gain. no moonface, etc. only some other stuff.

Come back with lots more questions - we're here to help and support and give you a place to vent,

Good journey.
I,

By darlene07
Posted November 4, 2009 at 8:57 am
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Mortalilty rate is very low!!!!! Its the disease that is a pain in the ass.

Actor Bernie Mac died of Sarc as also that football player Reggie white. There are many celebraties that have Sarc too.....

Today I get my Emulcifier mixer delivered. I cant wait to juice and feed my body natural foods. We have to start within! There is no way I am gooing to depend on these doctors to save me 100%. Im gonna start in the garden of eden...with the apple. All nautural as muchas I can and heal from the cells on up!

Dont let this get you down...cause it will. This board is a great place to start.

By starkl24
Posted November 4, 2009 at 9:35 am
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More great information again from IreneMarie...thanks so much.
And some bizzare episodes I had in the past year may have something to do with my sarc...flu like ache and chills/shivering where I had to get under several blankets and wait it out for a few hours. They stopped so I never went to the doctor for that issue.
Michael44...this website is the best and will help you a lot, it has brought me out of the depression I was in when I first started reading about the disease.

By Michael44
Posted November 4, 2009 at 10:11 am
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Thank you so much for the replies. I have an HMO so I guess all this stuff has to be worked out in terms of the different doctors.
First off is the pulmonology doctor. I guess they will check my lung function. I know I have lung scarring and the oncologist said I have nodules in my lungs too.
Funny though I don't believe I have ever had any breathing problems(thankfully)

Starkl24... you had chills? I haven't had shivering but I have literally had the chills for the past year with a two month break in Jan and Feb. Now it kinda comes and goes.
I have had symptoms of things for years. I think people were thinking I might be a hypochondriac or something because of all the weird symptoms that were going on.
It wasn't until the CT scan showed the vast amount of enlarged lymph nodes that the doctors finally said "ok we have to check this out"
I am glad there is this board to learn info and to communicate with others.

Mike

By jeanie33
Posted November 4, 2009 at 11:50 am
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Michael --welcome to theclub NOBODY WANTS TO BELONG TO. As you know from reading the posts here we are all different, symptoms, reactions etc. Re: chemicals -read Triggers -- many of us have noticed our sarc symptoms are brought on by specifc chemicals, sun etc. Could be they found the nasty little g s in your lungs before you began to show symptoms, coughing, difficult breathing etc.
HMOs are a good thing, but make sure you have someone you trust as an advocate. You need to understand what the docs are advising, prescribing. This is not an easily understood disease and the patient has to be vigilant.
Good thoughts,
Jean

By dog
Posted November 4, 2009 at 12:03 pm
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Thats not great news but coming from an oncologist, I'd say better than the alternative. I was relieved to hear I had sarc and not lymphoma after my mediastinoscopy. You will likely be scheduled for the same test in the future if the enlarged nodes are in your chest. Good luck

By Chatch
Posted November 4, 2009 at 12:07 pm
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Chills/fevers/night sweats are all classic sarc symptoms. When I was diagnosed in 2005, I had night sweats for at least six months and thought I was entering early menopause. But, it wasn't that - - it was sarcoidosis. I have pulmonary sarcoidosis, but have never experienced "breathing problems" or feeling short of breath. But, I have experienced hacking coughs that lasted several months (usually in colder months) for more than 20 years. I also experienced the "not right feeling" and a general achiness feeling.

Prednisone has many awful side effects, but it is the usual first drug of choice. It can make you gain weight or lose weight (I lost weight), have severe mood swings, awful insomnia, have a puffy face, lose your hair, grow hair where you hadn't before, and many others. I was on it twice for a total of about 2 1/2 years. At the higher doses the side effects are the worst. When I tapered down, they were somewhat manageable, but still no fun. I also had to take drugs to combat side effects, such as Nexium for stomach upset and Rozerem to sleep. I also took another drug called Dapsone, which was to help prevent me from getting pneumonia, since the Prednisone shuts down your immune system.

The tough part of this disease is that you can't go to just one doctor and you have to coordinate all the treatments among them. This website will offer you much support and knowledge. It has helped me tremendously. I have been off all meds for about a year and I feel great. Hope my "remission" lasts a good long while - like forever!! I wish you all the best as you navigate through getting diagnosed and treated.

By Michael44
Posted November 4, 2009 at 9:27 pm
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Thanks again for the replies.
To dog: I really hope I don't have to do a mediastinoscopy. I have had so many invasive tests already(bone marrow biopsy, lymph node biopsy and some other tests too). I do have enlarged lymph nodes in the chest.. scarring of my lungs and I think the doctor said "nodules" in the lung or something like that.
I don't have a cough or any shortness of breath that I can tell.
I too was happy it wasn't lymphoma but of course I have some anxiety in dealing with all this new stuff.

To Chatch... thanks.. I know its going to be tough to coordinate everything.. My main concern is hoping that my lungs aren't too damaged. I would think if I had major major damage that i would at least have some kind of cough or breathing difficulty.

Also to Darlene... I too read about Bernie Mac and that has gotten me a bit freaked out that someone relatively young can die of pneumonia like that.

By Michael44
Posted November 6, 2009 at 7:04 pm
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You're welcome! I am new too.. just trying to figure everything out. There are some really great informative people on the message board

By IreneMarie
Posted November 6, 2009 at 10:13 pm
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http://en.wikipedia.org/wiki/Sarcoidosis
is a good link for some basic knowledge about Sarc. Also use the "Find It" search window at the top of this page to enter keywords to search out Archivesfor specific topics.

Good journey, newbies!

Welcome to Inspire!

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