Hello from The San Francisco Peninsula

[wolfpv]

And yet another one....

I was diagnosed a few weeks ago with Stage 4 lung cancer. However, that diagnosis was based on symptoms (chest pains, shortness of breath, and a strange but seemingly unrelated sinus condition), and on Xray and CT scan. I was told there was virtually no possibility of another diagnosis. Told the wife. Told the kids. Told the co-workers. Had a very unpleasant week.

Then the CT "PET" scan came in, and called the diagnosis into some question. Then the biopsy. Oops, not cancer, but Wegener's. As I mentioned to my Rheumatologist, I'm one of the few who's really happy with the diagnosis.

To make a long story short, I went on Prednisone immediately, and my symptoms began to melt away. I (like many of you) read every available piece of information, literature, white paper, medical paper, study on the subject, and decided that Rituxan was the way to go. Had the perhaps usual fight with the insurance company... a battle I was going to, and did, win. I've now just completed the 4th and last infusion, and by Monday next I will be down from the initial dose of 60mg to 30mg of prednisone per day. All-in-all I feel great, and enormously optimistic, and haven't had too many prednisone related side-effects (well besides the appetite thing, and the hyper-active nervousness thing, and the leg and arm cramps, and the tendency to tell a lot more jokes than usual, and maybe...just maybe... being a bit snappy with my wife and kids). Incidentally, I have no clear signs of renal involvement at this time, nor any other Wegener's symptoms.

Oh, and a bit about me. I'm 66 (OK, 67 next week). Married for 30 years (but together for 48). Cathy is a retired urban planner. Two daughters, one 29 (just took the bar) the other 23 (a filmmaker). Accomplishments include an earlier government career, then sailed around the world, returned to build my own house, have kids, and build a manufacturing business with my sister - we now employ nearly 500 people. All in all a very good life so far, which I intend to hang onto for a long time, Wegener's or not.

So that's it in a nutshell. I'll be checking in on occasion, and anyone with questions for a newbie is welcome to contact me.

-Steve

[NikkiNicole]

Welcome! I am also in the Bay Area, in Santa Rosa. There are relatively few of us around. I hope you have a good team behind you. I have a wonderful rheumatologist through Kaiser but she is in San Rafael and she consults with a specialist at UCSF. It sucks that you have to be here but ... I am glad you don't have Stage 4 cancer. I was given a dual diagnosis of plasmacytoma and Wegener's so ... I faced them both. My cancer was relatively minor ... for now. I am hoping that monster stays away. My Wegener's has been easier to manage for me than others because I am limited in what it's attacked.
It is nice to welcome another Northern California person!!!

[Dirty Don]

Welcome Steve, know the peninsula pretty well...anyways, glad no cancer...some of the pre dxes people have received on here are almost ridiculous...mine went from severe infection to TB to 'we don't know'...then Mayo...all is well here too. Glad you have good docs. Check in, vent, share, ask...it's all here. Best to you.

[mrtmeo]

Welcome Steve!
Your story is similar to this lady, Patricia Dodge who has undetermined vasculitis of the lungs.
https://www.youtube.com/watch?v=VfQhYFKemb0&list=PL451A815B784B2048&index=41

[Rose]

Welcome Steve.

i and quite a few others on here were given the lung cancer diagnosis initially and I know the relief you felt when you were eventually given the Wegeners diagnosis. I really don't have much to add except to say you have found the best place on the web for all the information and support that you might need. I am happy that the Wegeners has not attacked your kidneys and hope that it never does happen but as you probably know it can at some stage and the earlier this is detected the quicker it can be stopped in its tracks. So I would like to give you some advise and get yourself some urine monitoring strips, monitor your urine often and the first sign of blood and protein contact your doctor. I think everyone with this disease should and must do this.....even those who have kidney involvement who are controlled as it could be an early warning sign that you are flaring .

Rose

[mishb]

Hi Steve and welcome.

I was also one that was very happy to have a diagnosis of WG and not TB or cancer.

I'm glad that they eventually got it correct for you and that you are receiving the right treatment

[Allisonquast]

Welcome to the forum. Sounds like you are in good hands and have educated yourself about the disease! It is crucial! Your cancer diagnosis must have been so hard on your family. My husband has lung involvement. Watch for clots. If you get short of breath don't ignore it please.

[gilders]

Welcome Steve.

I was yet another that was initially suspected with lung cancer.

You can count yourself slightly lucky that your lung CT was looked at with an open mind which led on to Wegener's diagnosis.
I had a lung biopsy to confirm lung cancer. As I didn't have lung cancer the biopsy came back negative for cancer, BUT I had to wait until my kidneys packed in until Wegeners was confirm with a kidney biopsy.

[Psyborg]

Welcome to the forum.

[annekat]

Welcome, Steve. I'm so glad you don't have lung cancer, but sorry you ended up with WG. However, it sounds like you are doing very well and have a great attitude, too. I'm glad you found us! I also have connections to the Bay Area, have lived there as a child, have relatives living there now, and lived in Davis for 22 years (not Bay Area but about an hour's drive northeast). San Francisco is a great city, and I know there is a world class WG specialist at UCSF, the one whom Nikki's doc consults with. Best of luck to you as you continue into remission! Keep us posted, and we want to hear anything that you want to talk about, any questions that you have.

[Jayne 14]

Welcome
Glad not the big c : sorry its the weggies gang you've joined
But : help support & love you'll get from here now on
Good luck x


Sent from my iPad using Tapatalk

[wolfpv]

Thank your all for chiming in. It's interesting to hear about all the mis-diagnosis (Last night I was looking at the Vasculitus Foundation video "testimonials" and its frightening how long some diagnosis took, and how it endangered the patients).

I am indeed fortunate - the entire misdiagnosis episode was about a week and a half, and the team at PAMF is very capable. When added to my ability to study online, I feel like a trip to Cleveland isn't needed! When compared to stories of multi-year misdiagnosis, kidney failures, near-death experiences, and related horrors I feel like a kid faking a cold.

Good luck to you all - thanks again for the words of welcome, and feel free to contact me if there's any way I can be of help.

Regards,

Steve

[BarbW]

Hi Steve,
I am down near Death Valley. Sorry for that scare. I just had one myself. My mammo came up with
a tumor. So did the compression mammogram. Waited for Anthem to approve an MRI, but it didn't. Then
I had a nuclear test....and the tumor was gone. The surgeon and radiologist were so sure it was cancer but it
disappeared before the biopsy. I am sure it was some sort of Wegs lesion. Wegs is one crazy ride.

[me2]

Glad to have you with us- sorry it had to be under these circumstances . Still, I am one of the old guard. My illness was not taken seriously 36 years ago and I was thought to have 'sinus infection' . I can't say which is worse - to be upgraded to Wg (like me) or down graded from cancer (like you). I'm sorry you went through that , it must have been very scary.
Still you might find yourself the luckiest of the un-lucky.
This is not to diminish what you have been through and what you face but to suggest to you to be thankful for a fate that has not been so kind to some.
I'm looking forward to hearing more about how you got here and how you move forward.
Thanks for joining us.

BarbW, you have certainly been through the wringer too. I'm glad you got a 'better' diagnosis too.

[drz]

Welcome to the noob. I think the number here that got a correct and early diagnosis of Wegs would be the minority. I don't recall that any one here had ever heard of it or knew what it was when they were given the diagnosis, but that is part of special commonality that helps bind us together, having a strange, unpredictable, highly variable, rare disease.

[annekat]

Welcome to the noob. I think the number here that got a correct and early diagnosis of Wegs would be the minority. I don't recall that any one here had ever heard of it or knew what it was when they were given the diagnosis, but that is part of special commonality that helps bind us together, having a strange, unpredictable, highly variable, rare disease. The only reason I'd ever heard of WG was because I have a habit of googling any medical symptoms a lot, be they backaches, joint pain, or whatever. So I was having a lot of trouble with my ears and getting my eustachian tubes to open up when they should, after a big, atypical ear infection. So I googled around about e-tube dysfunction, and there was Wegener's Granulomatosis. But no, I couldn't have that, that's too big a word. I must just have a lot of allergies and recurring sinus infections as a result, which also block the e-tubes, like the docs say. Well, when things came to a head, and my lungs got involved..... the rest is history. At least there was the small comfort of knowing that I'd read about this disease before and could go back and check out what I'd read. And luckily, I stumbled upon the forum before I was even officially dx'ed.... way better than randomly surfing the web.

[daystarr8]

Hi Steve I'm a new by to this forum but was diagnosed with WG in 1979. My dr of 34 years recently retired and I am in search a a new doctor. I'm in central California. May I ask who you are being treated by and what is their background? I'm glad you are doing much better. A positive attitude is what I live by

[wolfpv]

daystarr,

My regular medical facility is the Palo Alto Medical Foundation, and my rheumatologist is Dr Andrew Rozelle. He has a handful of Wegener's patients, and is pretty well up on the disease. The overall team is very good, and they went to bat for me to fight insurance for Rituxan - honoring my insistent, persistent demands. He has been willing to spend a lot of time with me, answers emails at almost any time of day (incl. weekends). He listens, and does not dismiss the opinions I've developed from my own research into the disease. In general PAMF has managed to schedule appts almost immediately, lab tests are generally same-day, with results the following day. CT, PET, and other scans take a few days to schedule, but no horror stories.

I think your question brings up a very interesting issue regarding this type of disease. There was a time, when one was diagnosed with a rare disease, that you searched the world for "That guy" (or that woman) who was the leading expert... and then you traveled to the Mayo clinic, or Cleveland, or perhaps Paris. I think that time is pretty much over. Any knowledgeable, interested specialist, in any facility, can provide state-of-the-art care... if they care to do so, and are willing to educate themselves about the disease from the incredible amount of available information. The horror stories you hear on the vasculitis web site - or this one - tend to be from original misdiagnosis which went uncorrected for a long time, from the occasional Dr. who doesn't care about the patient or the disease, and from insurance denials or predilection for cheaper drug solutions.

So - I can certainly recommend PAMF and Dr. Rozelle, assuming they are within your provider network options. As you are, I'm sure, aware, there's also a Vasculitus clinic at UCSF, and although I have no details they're undoubtedly a good option.

Good luck finding the right Doctor. Since I'm quite new to all of this, there are probably others in the area who could give you additional (and perhaps better) recommendations.

-Steve

[daystarr8]

Thanks for the input. I do agree with you to an extent when it comes to treatment as in medication. Finding the dr that will listen and treat accordingly to the ups and downs and forever changing symptoms. But when it comes to cutting in my airway and the possibility of losing my vocal cords or ending up with a tracheotomy I'm going to search out a surgeon who has done many many many wegeners patients and has had great success. The less trama to that unforgiving spot is the most important thing. I do have good doctors but there are not any surgeons in this area that I'm willing to let them do their first wegeners dilation on me. So if I travel onetime or a few times and get the best possible results it will be worth it for me.

[wolfpv]

daystarr,

I guess, as a "newbie" to this disease, I'm only thinking in terms of drug therapy. Of course there are other considerations - and a problem with your esophagus is a major one. I have no experience with anyone involved with ENT surgery at PAMF or Stanford. Good luck finding the right people.

-Steve

[daystarr8]

Hi Steve. I think I was a little rough around the edges with my comment. Sorry. I wasn't trying to be I am just frustrated with yet another conquest in this journey of life with WG and I'm becoming very short of breath and I'm exhausted with it and I know it's just the beginning of this chapter. And I've lost count on what chapter I'm on. So I hope I didn't offend you.

[wolfpv]

No worries. I didn't take any offense - your comments were a good reminder that treatment of the disease goes well beyond questions of Rituxan vs. Cyclophosphamide, or prednisone taper-off rates. I suppose that day may come for me, but for now I'm happy to be relatively ignorant of surgical options, not to mention nephrology, transplants, etc.

[drz]

Thanks for the input. I do agree with you to an extent when it comes to treatment as in medication. Finding the dr that will listen and treat accordingly to the ups and downs and forever changing symptoms. But when it comes to cutting in my airway and the possibility of losing my vocal cords or ending up with a tracheotomy I'm going to search out a surgeon who has done many many many wegeners patients and has had great success. The less trama to that unforgiving spot is the most important thing. I do have good doctors but there are not any surgeons in this area that I'm willing to let them do their first wegeners dilation on me. So if I travel onetime or a few times and get the best possible results it will be worth it for me.

I think often their peers know who has a reputation for being good or experienced with a certain procedure. When I was pursuing my BAHA surgery I asked my local ENT about where I could get such a procedure done and her recommended a surgeon two hundred miles away at nearest big University Hospital clinic and said that person does hundreds every year so that was place to go. I always ask any surgeon how many procedures of my kind under consideration have they done, or how many they do each year. You want some one who isn't doing his first or even 10th one.