Newbie with lung tumor

[mrtmeo]

Thank you, everyone!
They've done urine and blood several times. I have tried making sense of it, but it is difficult. My sed rate was only 17 and my most recent urine seemed better than the previous two. the docs said no sign of kidney involvement. The whole thing is overwhelming and confusing. Especially the solitary mass....I can only find anecdotal evidence of that with Wegener's. It seems lung involvement presents as multiple nodules not solitary, large masses.
I am seeing another rheumy tomorrow morning for second opinion and I am still waiting to see a pulmonologist.
I am not in complete denial, I know something is wrong. Some days I can't even get out of bed. Two days ago, out of the blue, my right shoulder was in such pain, I couldn't lift my arm. Today, it's my knee. And, my coworker asked me what was wrong with my hand today, I looked down and my left hand was white and bluish(it was cold in the office)...again...wtf??? I feel like a stranger in my own body.
I have these:
Antimyeloperoxidase (MPO) Abs
<9.0 U/mL 0.0-9.0 N
Antiproteinase 3
(PR-3) Abs
94.4 H U/mL 0.0-3.5 N
Cytoplasmic (C-ANCA)
1:80 H titer Neg:<1:20 N
Perinuclear (P-ANCA)
<1:20 titer Neg:<1:20 N

With the high C-ANCA and PR3, it sure looks like weg's.
Vasculitis lung nodules can shrink and enlarge back n forth like waxing and waning of the disease activity, so don't wait on it.
The quicker you can get into remission, the better.
I don't know if a Rheumy would treat you without a formal biopsy for confirmation, but you should check.
Many have limited vasculitis, limited to one organ and usually get treated with immunosuppressants that are not as toxic as Rituxan and Cytoxan.
Personally, I would never let a dr do a lung biopsy for confirmation of vasculitis due to the damage that's caused from such an invasive procedure.
Lung biopsies are rarely conclusive.
Don't let this go too long.

[Rose]

Thank you, everyone!
T Especially the solitary mass....I can only find anecdotal evidence of that with Wegener's. It seems lung involvement presents as multiple nodules not solitary, large masses.
I am seeing another rheumy tomorrow morning for second opinion and I am still waiting to see a pulmonologist.
I am not in complete denial, I know something is wrong. Some days I can't even get out of bed.
<1:20 titer Neg:<1:20 N

Hi
I would just like to comment that whilst multiple masses in the lung are common with WG, solitary masses in the lung can and do occur with WG being the underlying cause. There was someone here a few months ago with a lung cancer diagnosis (a solitary mass) and was told the same thing. Other symptoms he was experiencing were indicative of Wegeners and many of us on the forum suspected that WG was what was going on and not lung cancer and this turned out to be so. Sorry I cant remember the name of the poster but maybe he will see this and comment or you could put lung cancer (many of us had that initial diagnosis) in search and it may come up. Good luck!

Rose

I should have mentioned that I have been told on 3 different occasions that i have lung cancer. 1) Initial diagnosis March 2008 2) Again when my new Rhumy sent me for a check up Xray about a year after diagnosis in 2009 and the report came back that a mass was seen. I had an MRI scan a few days later which confirmed lung cancer. She made an urgent appointment with my Pulmonologist. Previous xrays and scans were reviewed and I was told it was scar tissue. 3) 2013. After a scan of kidneys, lung cancer (single mass) was seen in lungs. This time the Pulmonologist was worried as there were some changes but it was determined after reviews of previous scans and xrays by senior radiologists that it was scar tissue again.

[mishb]

Hey Newbie, welcome to this amazing forum.

I'm sorry I'm late in saying hello - I have many many threads to catch up on.

I remember those roving pains very well - 3 days on with one limb and then 2 days off with no pain, then 3 days on with a totally different limb/joint and then 2 days free again. Crazy.
Yours certainly sound like WG

Best of wishes and good luck tomorrow

[XnCelt]

So, Rose your masses started to shrink within days?...how was that confirmed? Did you have a repeat CT scan that quickly? Drs at the UPenn GPA Center told me that it takes a couple of months for the Rituxan to work...the prednisone eliminated my symptoms overnite but that was more likely due to its anti-inflammatory affect. Hopefully the immusonsuppesing properties of predisone have also slowed the progression of the disease.

Roger/XnCelt/Phillie

[Rose]

HI

It wasn't a repeat CT scan. It was just a plain old chest x ray. I had chest x rays on admission (full of golf sized masses and I had no symptoms) and then a CT scan of lungs followed by a kidney biopsy. When the result of that confirmed WG treatment began. I had though developed a pneumothorax caused by the fine needle lung biopsy and so they were keeping an eye on that. The day after the completion of solumedrol 1000mg x3 days and just before commencing IV cyclophosphamide an x ray was taken to check on the pneumothorax and a delighted doctor came to my room to show me the x-rays and how the masses had shrunk. I obviously was not in remission after 4 days but the masses had definitely shrunk and that was with the very high dose prednisone over 3 days alone. IV cyclophosphamide commenced the following day. The masses in my lungs continued to improve. I am though left with scar tissue. The next scan I had after diagnosis was about a year later when I had a follow up chest x ray and lung cancer was Reported to have been found but it turned out to be scar tissue.

yes I believe it does take a few months to knock the immune system into submission with RTX /Cyclophosphamide and it was obviously the prednisone in such high doses that reduced inflammation in just few days and as you say, slowed the progression of the disease until the other chemo drugs, in my case Cyclophosphamide IV, kicked in.

Rose

[newbie]

Hey there! Thought I would check in. I'm on week 5 of treatment. I had a little setback in the form of sinus infection. My rhuemy prescribed antibiotic and while on it, I caught a virus that was making its rounds through the family. I've kicked them both now and am feeling better. Back to the clear, sticky stuff from nose and chest. Yay? Lol
I am up to 7 pills at 2.5 mg of MTX. I max out at 8 this coming sunday. I think I actually feel a little better today. My upper gums on the left side seem to have gone numb....which is ok as it has reduced the facial pain on that side. It's like someone snuck in and gave me a shot of novacaine. Weird, but it seems weird is the new normal so...
Thank you all for everything you share on t his site. I have learned so much from all of you.....and I've much more to learn.
Blessings to all!

[mrtmeo]

That is great news newbie!
Keep us posted.