Daughter here trying not to drop her basket

[LindseyRN]

Hello. I have been a member here for a couple weeks now, reading your posts, and learning so much from your experiences (both challenges and triumphs) with WG. My father has been on the journey to getting diagnosed over the past two months. In such a short time it has been a roller-coaster for my family. This will be quite long, but I'd like to paint the entire picture (plus I'm a rambler!):


~ Dad was diagnosed with shingles in November just before Thanksgiving after noticing he was having the classic signs/symptoms of rash and pain on one side (left side of back and abdomen). Doctor prescribed a round of acyclovir and it cleared right up. No mor pain at all and only the remnant of his rash.


~ Around this time, maybe a few days before maybe a few days after his shingles diagnosis, he mentioned he was having tooth sensitivity in his back upper teeth and back lower teeth. He passed it off as somehow related to his shingles virus, because at his dental appointment in early Nov., his dentist described his gum and teeth as a mouth of a 40 year-old. A week or so went by and his gums around those back teeth became inflamed and he started describing that when he ran his tongue over those areas it felt like hamburger meat. My dad has always been meticulous about oral care almost to the point of obsessive, so he went back to his dentist to get it checked out. The dentist told Dad he literally had no earthly idea what was going on with his gums and teeth. He sent Dad straight over to a periodontist that same morning.


~ The periodontist (who has been in practice 30+ years) told Dad he had never seen anything like what was in his mouth before, made a call to an ENT, and sent him straight over to see the ENT that same day. Of course, Dad was getting scared and anxious at this point.


~ The ENT said his lesions did not look cancerous, but took several biopsies to confirm. He also swabbed for a nasal culture due to my dad's sinus inflammation, stuffiness, and sinus drainage that had recently begun. By this point he had also begun a dry cough, headaches, and tearing and redness of his left eye. The ENT said he really didn't know what could be causing his symptoms and told Dad to come back in 4 days for the biopsy results.


Dad went back on Christmas Eve and was told by the ENT that the biopsies were negative for cancer and the nasal culture showed no growth. He (the ENT) felt that his mouth sores and inflamed sinuses were being caused by a virus, so he put him on acyclovir and told him to come back in 10 days.


~ Over the next 5-6 days on acyclovir, my dad's mouth didn't get any better. I told him I thought he should feel at least SOME better at that point. He went back to the ENT the next day and the ENT said he honestly didn't know how to treat him, but referred Dad to a pathologist at the dental school nearby.


~ A couple days later my dad saw the pathologist who took more tissue samples and swabs (no blood was drawn). Four days later (a Friday) Dad went back to the pathologist for results and was told that after looking at slides under the microscope, he is certain my dad has Wegener's Granulomatosis. He told my dad that he should see his primary care doc ASAP and begin further testing as well as treatment. The pathologist then wrote a prescription for a 50mg taper of prednisone and handed Dad a poorly photocopied and very frightening article on Wegener's.


~ Monday morning Dad went to his PCP to let him know in person of his diagnosis. His doc immediately referred him to a rheumatologist who has experience treating Wegener's patients.


~ My sister and I went with Dad to see the rheumatologist the very next day (Jan. 21). I felt good about her. She spent almost 2 hours with us, thoroughly physically examining my dad and educating us. She said it is common to have sinus problems with WG, but not as common to have gum inflammation like Dad has been experiencing. She said she wasn't going to treat him according to the pathology results alone, so she walked us to the lab where they drew 10 vials of blood and took a sample of Dad's urine. He then had a chest x-ray, a chest CT and a CT of his sinuses.


~ We returned to the rheumatologist's office for my dad's follow up 10 days later (this past Friday Jan. 31). She informed us of the following regarding his tests:


Blood tests were all within normal range with the exception of two:
-PR3 ANCA positive
-TB Gold In-tube test "indeterminate"

Urinalysis normal

Chest X-ray clear

CT of sinuses showed inflammation and thickened lining (worse on left)

CT of chest with contrast showed one 1.5 cm density on the posterior apex of left lung. No adenopathy or pleural effusion.


At this point all I could focus on was the chest CT finding and I felt as if the floor was going to open up a swallow me. I don't exaggerate when I say right then I stopped being my dad's 35 year-old daughter and turned into a frightened, panicked little girl.


The rheumatologist began talking about referring Dad to a pulmonologist to investigate his lungs further before she felt comfortable starting his therapy. She spoke of "limited Wegener's" and questionable microscopic polyangitis and how the indeterminate TB test result made her suspicious as well. To appease me I think (I told her how miserable he feels with his sinusitis, headaches, and cough and Dad agreed), she prescribed him an antibiotic and prednisone 20 mg daily. Of course after 5 days on such a small dose of pred, he feels no better. His appointment with the pulmonologist is tomorrow (Feb. 5) and his rheum. called him today and notified him that she has scheduled a follow up with his ENT on Thursday.


Dad, Mom, my sister, and I are all so anxious and fearful, especially about the frightening chest CT. What a punch to the gut. :-( Dad has always been active and healthy and still appears so at 64 years old...he just doesn't feel that way.


I apologize for such a long post. I feel so scared for my Dad. What makes this hardest is seeing him worried...and afraid...even though he's doing his best to be positive. I appreciate anyone who reads this and can offer me some words of wisdom and encouragement.

Lindsey

[pberggren1]

Hi Lindsey,

Thank you for posting this. I'm sorry your dad is so sick. From what you have said I would definitely say your dad has Wegs. He should be starting treatment now. High dose pred, 60mg, and at least Imuran, but I would push for Rituximab.

Anyway, usually biopsies are not conclusive, but when the pathologist says he is certain it is Wegs then it is hard to argue that. His teeth, nose, sinus, eye, etc symptoms all seem like Wegs to me. Then there is the 1.5cm thing in the lung, that could be Wegs too. And also the positive PR3 points to Wegs. It is odd though that the other blood work like WCC, ESR and CRP would be in normal range.

Where does your dad live? If you are near a major center then I would suggest going there.

[LindseyRN]

Phil, thank you for your advice. I agree about my dad starting treatment now. I am definitely anxious for him to start. I think the delay is due to the indeterminate tuberculosis test result and density found on his lung CT. The rheumatologist was steadfast about wanting his lungs checked first before starting him on high-dose immunosuppressants.


No, we are not near a major center but going to one is very possible financially for my parents. We wanted to get a firm diagnosis first, but now we have been sidetracked (and sucker-punched) with a terrifying lung "density." I am a nervous wreck.

[windchime]

Hi Lindsey and welcome to the site. It is certainly scary getting this all at once. It must be very overwhelming. With that being said you've come to the right place for some support and answers about the disease. What part of the country do you live in? There are definitely centers that have excellent vasculitis care. Such as Cleveland Clinic, Johns Hopkin and Mayo. Also check this out Patient Information Book (http://www.vasculitisfoundation.org/mcm_resources/vasculitis-patient-information-resource/) It is a patient guide that gives easy to understand explanations and a list of meds that are used to treat the disease. This guide is on the Vasculitis Foundation web site which also has a list of doctors that treat vasculitis. Most of all hang in there. They probably won't be able to give you a diagnosis of the lung spot without a biopsy which I'm sure the pulm doc will explain to you tomorrow. Good luck and keep us posted.

[LindseyRN]

Hi Lindsey and welcome to the site. It is certainly scary getting this all at once. It must be very overwhelming. With that being said you've come to the right place for some support and answers about the disease. What part of the country do you live in? There are definitely centers that have excellent vasculitis care. Such as Cleveland Clinic, Johns Hopkin and Mayo. Also check this out Patient Information Book (http://www.vasculitisfoundation.org/mcm_resources/vasculitis-patient-information-resource/) It is a patient guide that gives easy to understand explanations and a list of meds that are used to treat the disease. This guide is on the Vasculitis Foundation web site which also has a list of doctors that treat vasculitis. Most of all hang in there. They probably won't be able to give you a diagnosis of the lung spot without a biopsy which I'm sure the pulm doc will explain to you tomorrow. Good luck and keep us posted.

Hello, Cindy. Yes, this is all very overwhelming and I'm not even in his shoes. But he's my Daddy and seeing him weakened like this makes it feel like there is an elephant sitting on my chest. Thank you for replying to my post. You are so kind and helpful.

[annekat]

Welcome, Lindsey. I'm so sorry you have a reason to be here but it will make you and your family feel less alone with this disease and give you hope that your dad can pull through this and get back to something like his old self. Quite a few of us on here were dx'ed at around your dad's age and are doing OK, or even very well. I'm glad you have already gotten a lot out of reading our posts, and hope they've had the power to comfort you at times. You may also do searches to find posts on specific aspects of WG. I can feel how scared you are for your dad, but perhaps that will lessen as the diagnosis process is completed and he begins treatment. I think that will ease some of your anxiety. It is good that your parents have the ability to travel to one of the major centers, and I hope they do. Getting some treatment started in the meantime would be good, though, and your docs can consult with the experts if need be. Best of luck to your dad and the family.

[Dirty Don]

Welcome Lindsey, glad you found us and have done some looking around...now that your dad has WG this site will become more informative and supportive than you know. Your dad, if he feels OK with it, may want to get on also, if for no other reason than to look at the discussions, etc. I am 65, have had WG dx for 2 1/2 years, had chest xrays that showed 'broken glass' essentially, sinuses that did and still do look like hamburger (it really is an apt description!), leg & foot neuropathy...hmmm, checking...that'll do for now. My presenting symptoms were like your dad's...purpura for no reason, aches and pains roaming the bawwwwwdy, bloody sinuses, etc. My pulmy upon meeting me the first time told me that he didn't get to meet many people with lungs like mine...they were dead. Whatever now, I am here now, lungs cleared completely, numbers normal as can be, am learning to ride the waves of WG...better some days than others...but now I'm doing what I want for the most part, don't travel so well anymore and not really anxious to do that much anymore...except to see the kids and grandkids. In essence, your dad will do well and he'll feel better, but the first 5-6 months are scary for many...so many thoughts, drugs, decisions, and so on. I have what is termed WG Lite also...that is NOT an apt description, but docs have seen much worse! LOL! Glad you are supporting your dad, and remember it isn't just him either...WG tends to involve family...so all of you need info and to talk about it whether it be on here or wherever. Be in charge of your docs, ask questions, get answers, make lists, and you'll learn all the other stuff! Best to you, please keep sharing so all of us can learn.

[woz]

Hi Lindsey, being diagnosed early, is a huge plus. Its usually when a doctor thinks its a sinus problem, or some kind of flu, and takes too long to get you on the drugs, that can manage or cure WG, that you will have major problems. The rest of it is exactly as Don describes above. All the best.

Regards Woz....

[Christina32]

Hi Lindsey, I was diagnosed with WG last march with similar symptoms. After months of fatigue and reoccurant colds I got what appeared to be an infection on my gums. I saw a dentist who prescribed antibiotics. It got significantly worse day by day. Tried two more types of antibiotics to no avail. It took two weeks in hospital in a severe downward spiral before they reached a diagnosis. I soon found out that WG was 'rare' and difficult to diagnose. Also the type of physical presentation was a rarity within. I had 2 'spots' on my lungs as well - the biopsy was inconclusive. After treatment a further scan showed these spots significantly smaller - this happened within a few months. It is all very scary and be careful where you look for info. Sounds like they may have caught it before major damage is done which is lucky in the wegeners world. I was given one shot of cyclo, then rituximab and prednisone....and azathioprine. Crappy drugs but excellent treatment. How is your dad doing with the diagnosis? You will always worry but maybe less with the right information. My doctors aren't well versed with WG but from what I've experienced and in what I've read here they're doing well. I hope answers come easy for you as they are the peace of mind. Stay strong.....

[mishb]

Hi Lindsey I would like to say welcome to the best group in town, however since we are from all parts of the world - Welcome to the best group on this Planet :thumbsup:

I'm so glad that you have found us and that you have also been doing some ground work for your dad.

A lot of us were told, prior to a WG diagnosis, that TB needs to be considered :sad:........for your dad's lungs, I am certain it will be WG

Keep learning as much as you can and I wish, your dad, good health in the very near future.

[amann8506]

Welcome Lindsey! So glad that you found this group - everyone is very helpful and informative. I was diagnosed in 2011 after a week in the hospital - my first hospital admission diagnosis was pneumonia, but was later determined that the spot was WG. Happy to say that my lungs are clear now. I am now 30 and have had a hard time dealing with the WG, but I have a strong support system in my family. Good luck to your family and your dad!

[pwc51]

Hi Lindsey - Welcome to our group (not that you would have chosen to be here!). I can relate to your story - I am the 'dad' who contracted WG and one of my daughters was feeling very much like you do. It is very scary for all concerned in the early days as we generally all start from a position of zero knowledge and the initial information seems to be full of doom and gloom. I came through after a period in hospital and, although life has certainly changed, I lead a reasonably normal life again now.

[LindseyRN]

You are wonderful, all of you! Thank you everyone so so so much for taking the time to read my post and reply with such warmth and helpful information. ((( BIG HUGS TO YOU ALL )))


My Dad's pulmonologist appointment didn't go as well as we had hoped. The doctor said the nodule, although small, looks highly suspicious of a cancer tumor. He said that with Wegener's there are multiple nodules present in the lungs and at least one nodule in each lung, whereas my Dad only has a solitary nodule. He said because of where the nodule is located and its small size, it will not be possible to do a biopsy, so a lobectomy would be indicated after he gets Dad's PET scan results.


The pulmonologist did give Dad's rheumatologist the go ahead to start going heavy on his WG treatment, but that just doesn't seem as important anymore. Sigh...


I think I am still in shock. I just wasn't prepared for it to be anything more than WG in his lung. I mean I knew there was a possibility, but I guess I was being too Pollyanna.

[MikeG-2012]

My Dad's pulmonologist appointment didn't go as well as we had hoped. The doctor said the nodule, although small, looks highly suspicious of a cancer tumor. He said that with Wegener's there are multiple nodules present in the lungs and at least one nodule in each lung, whereas my Dad only has a solitary nodule. He said because of where the nodule is located and its small size, it will not be possible to do a biopsy, so a lobectomy would be indicated after he gets Dad's PET scan results.

Lindsey, I was diagnosed in April of 2012 and am in the process of coming off a decent sized flare up that started back late summer. I wanted to chime in and say that I too have nodules in my lungs. They were rather large and hollow in November when the first chest x-ray was taken. Now, they are starting to show some signs of healing--they are more opaque and have started to shrink slightly. I am still not back to 100% of my lung function and fatigue easily because of the lung damage. But, the good news is that they are healing--albeit slower than I would like them to be healing. I have a shot of my side-by-side x-rays here. (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3475-s-definitely-flare-up.html)

The lungs will heal over time. Right now, let the docs get on the treatment for the disease and hope that they can stop any further lung damage from the wegs. With the sinus issues, find a good ENT who knows the ins and outs of the disease and is willing to go the extra mile to help your dad.

I agree with everyone else here, get him on-line on the forum and let him start reading our stories, and let him know that he is certainly NOT ALONE in this struggle.

[pberggren1]

I think this pulmy is possibly flawed in that thinking. I am sure that Wegs can present with one nodule. I might get a second opinion from an Interventionary Pulmonary doc.

Do you know what meds your dad will start on?

[LindseyRN]

I think this pulmy is possibly flawed in that thinking. I am sure that Wegs can present with one nodule. I might get a second opinion from an Interventionary Pulmonary doc.

Do you know what meds your dad will start on?

I don't know...the pulmonologist sounded pretty confident.


I did get them to place a PPD, but he said since my Dad has been on a small dose of pred, it probably won't result in a true reading even if he does have active TB. That's probably why his Quantiferon gold TB blood test was indeterminate I'm assuming.


His rheumatologist said she will give him high-dose prednisone (60 mg) and Rituximab.

[pberggren1]

I am glad to hear he will be starting treatment soon with RTX versus the Cyclophophamide which is much harsher. I hope your dad will join this Forum. He is so blessed to have you as a daughter.

[windchime]

Hi Lindsey, Did you get a copy of the CT? If so how does it read? The radiologist will usually indicate what the chances are that the nodule could be cancer, TB, WG (might say inflammatory). Also, I hate to disagree with your doc regarding WG not presenting as only a single nodule, but I do. No where in anything that I've read through the years about WG's says that it only presents only as multiple nodules in the lungs or one in each lung. (This doesn't mean I'm an expert, but I would think if this were the case it would be well known.) Does this pulm doc have any experience with WG's at all? Even though your pulm sounded confident (that's their job as they wouldn't want you to think they were an idiot) doesn't mean he is. He could be reading from a book with no real life experience with WG's. Also where is the nodule located in the lung?

I would encourage you to call the Cleveland Clinic and make an appt with a specialist to get some definitive answers before having a lobectomy. That is very invasive and I'm surprised that they are unable to do a wedge biopsy. You should be able to get into the Cleveland clinic relatively quickly from what others have posted.

Also a suggestion is to get copies of all records as you go along. This will make things so much easier in the long run especially as you pick up or change doctors.

On the up side don't panic. I know that your visit didn't go as planned, but don't assume the worst. I've had reads on CT's that say "can't rule out cancer." I would be more interested in what the pathologist found and his conclusions which are based in fact not speculation. Unfortunately the only way to tel what the nodule is, is by biopsy. The question is whether or not a lobectomy is required. As my doctor recently told me "the issue is the tissue." Please get a second opinion. Best wishes and please keep us posted.

[annekat]

I'm sure I have read of people on here who got a WG dx but only had one or maybe two nodules. Others have had smaller, scattered lesions throughout the lungs. WG doesn't present the same way in everyone. You might do a search on here. I remember Katrina posting for a long time about a nodule that they weren't sure was WG, though she had been diagnosed and was getting treatment. But it kept growing and they thought it might be cancer. In the end, I think it wasn't either cancer or WG but some kind of benign tumor. I may be remembering this all wrong. So if you want to search her posts, I think her username is HopeinTennessee.

[Alysia]

Hi Lindesy,
welcome to the forum. I am sorry for you and for your family for all you are going through. I understand how tough and scary it is for you as a daughter. I think that it is harder to be the one who is taking care, then to be the sick one.
your dad was diagnosed fast enough and this will help him recover sooner and easier. rtx is a great med. he couldnt got a better one.
as for the lungs issue: I had a mess in my lungs in the acute onset, some docs thought it maybe cancer (lucky to me they didn't tell me so at that time), but it was not. I never had any noodles. this made my diagnosis more hard. since in my begginning they didn't consider WG, my lungs were cleared by pred only, 60 mg, in about 2 months. scars remains.
I echo the others about second opinion of lungs doc. and get a copy of the CT. differnet docs can read it differntly.
I am sending my prayers to your dad and lots of hugs to you. he is blessed to have you. please continue to write.

[LindseyRN]

Hi Lindsey, Did you get a copy of the CT? If so how does it read? The radiologist will usually indicate what the chances are that the nodule could be cancer, TB, WG (might say inflammatory). Also, I hate to disagree with your doc regarding WG not presenting as only a single nodule, but I do. No where in anything that I've read through the years about WG's says that it only presents only as multiple nodules in the lungs or one in each lung. (This doesn't mean I'm an expert, but I would think if this were the case it would be well known.) Does this pulm doc have any experience with WG's at all? Even though your pulm sounded confident (that's their job as they wouldn't want you to think they were an idiot) doesn't mean he is. He could be reading from a book with no real life experience with WG's. Also where is the nodule located in the lung?

I would encourage you to call the Cleveland Clinic and make an appt with a specialist to get some definitive answers before having a lobectomy. That is very invasive and I'm surprised that they are unable to do a wedge biopsy. You should be able to get into the Cleveland clinic relatively quickly from what others have posted.

Also a suggestion is to get copies of all records as you go along. This will make things so much easier in the long run especially as you pick up or change doctors.

On the up side don't panic. I know that your visit didn't go as planned, but don't assume the worst. I've had reads on CT's that say "can't rule out cancer." I would be more interested in what the pathologist found and his conclusions which are based in fact not speculation. Unfortunately the only way to tel what the nodule is, is by biopsy. The question is whether or not a lobectomy is required. As my doctor recently told me "the issue is the tissue." Please get a second opinion. Best wishes and please keep us posted.

Cindy, below is my Dad's chest CT report verbatim.


------------------------------
Chest CT with contrast


History: Wegener's Granulomatosis


CT of the chest was performed after injection of 100 mL of nonionic contrast.


Multiplanar imaging was obtained.


The pulmonary arteries are normal. The aorta is normal. The lung zones are well seen and there is some chronic change in the lung apices. There is a spiculated density in the posterior apical left lung. This should be further evaluated with PET scanning to be sure that this is not a malignant lesion. This is approximately 1.5 cm in size. Mediastinum is intact. No infiltrate pleural effusion or other findings are seen. There is no adenopathy.


Impression: Apical left lung spiculated density 1.5 cm in size, etiology is undetermined. Recommend PET scanning. Mild chronic lung changes.
------------------------------


I honestly did not ask the pulmonologist if he has had experience with Wegener's patients. I wish so hard that I had asked. He appeared young to me (mid-40s maybe?). I think I was in such shock that he thought it to be a malignancy that I wasn't really having lucid thoughts. As a nurse, I am on my A-game with my patients, but with my Dad I was just his daughter. All I seemed to hear was "malignancy...Wegener's doesn't present with a solitary nodule...Wegener's is always present in both lungs...does not look like an infection...PET scan...removing left upper lung..."


As for Cleveland Clinic, he told me he wants to wait and see what the PET scan shows and then he would consider going forward with an appointment there. He says he is still feeling overwhelmed with what the pulmonologist said yesterday, so he does not want to plan that trip right away. I guess if I were facing the possible diagnosis of cancer, that would be my top priority as well. I'm hoping and praying constantly that this isn't his case though, but the pulmonologist seemed so sure...:sad:

[pberggren1]

Lindsey, your dad can make his own appointment at Cleveland Clinic with Dr. Langford. I would seriously go ahead and do that.

[LindseyRN]

My Dad also went to his ENT today. His rheumatologist made him the appointment on Monday so he could review Dad's sinus CT with him. My Dad said the ENT told him his gums had completely cleared and healed and the only other thing of note on his assessment is his left nasal passage was more inflamed than the right, but this inside of his nose did not look very bad at all. The ENT also said, "Hopefully this thing in your lung is inflammatory due to Wegener's and can be cleared up with treatment." Of course my Dad said he thought he may just be trying to make him feel better.

All of my Dad's complaints/symptoms are on his left side (headache, tearing eye, runny nose, scalp tenderness). Go figure when you read what the CT showed.


If I may, I am going to post my Dad's CT sinuses results:


------------------------------
CT Sinus


History: Wegener's Granulomatosis


Multiplanar imaging of the sinuses show opacification of the left maxillary sinus and left ethmoid. There appears to be thinning of the medial wall of the maxillary sinus. The frontal sinuses are clear. The oral pharynx and nasopharynx are normal. The nasal septum is midline. Wegener's granulomatosis cannot be excluded, but the changes most likely are due to sinusitis.


Impression: Sinusitis predominantly involving the left maxillary and ethmoid sinuses. Minimal adjacent nasal turbinate edema is present.
------------------------------
And just for the heck of it, my Dad's chest x-ray:


History: Cough


2 views of the chest are obtained. Visualized osseous structures are intact. The cardiac silhouette is upper normal size with atheromatous change if aorta. No airspace consolidation or airspace edema. No large pleural effusion. No pneumothorax.


Conclusion:
1. Atheromatous changes aorta.
2. No airspace consolidation or airspace edema.
------------------------------

[LindseyRN]

Lindsey, your dad can make his own appointment at Cleveland Clinic with Dr. Langford. I would seriously go ahead and do that.

My Dad's rheumatologist has his written consent for my Mom, sister, and me to be able to obtain all his medical records. I'm considering taking the liberty and having them faxed to Cleveland Clinic. He wouldn't mind, BUT getting him up there is another animal (I'm certain I could do it, however). Right now all he can think about is what's going on in his lung though.

[pberggren1]

I believe that is why he needs a very experienced Pulmonologist, one that is Interventional.

[windchime]

Hi Lindsey, It's okay to be his daughter and not a nurse during this time. Don't be hard on yourself for forgetting things, we all do it. That's why many on here advocate keeping a list of questions that you take with you when you go to see your docs. I have lists for each doc I see. It works well.

I'm guessing the the pulm doc was saying they would have to do a lobectomy IF if was malignant. The location of the tumor is a concern since a lot of lung cancers present in the upper lobes. I went through this scare myself since my last nodule is in my upper right lung. The spiculated borders are also a concern, but this can also be ground glass which can be indicative of WG's or an inflammatory process. There are a lot of parallels, unfortunately. The CT report DOESN'T indicate that the nodule could be malignant instead it says, "to be sure that this is not a malignant lesion." I keep going back to the positive ANCA and the pR3 which are the markers for WG's.

The PET scan while not 100% accurate will hopefully get you going in the right direction. Does your Dad have it scheduled yet? I know this all so scary for all of you and my prayers are with you. Be gentle with yourself and know that we are here for you no matter what the diagnosis.

[marta]

You are wonderful, all of you! Thank you everyone so so so much for taking the time to read my post and reply with such warmth and helpful information. ((( BIG HUGS TO YOU ALL )))


My Dad's pulmonologist appointment didn't go as well as we had hoped. The doctor said the nodule, although small, looks highly suspicious of a cancer tumor. He said that with Wegener's there are multiple nodules present in the lungs and at least one nodule in each lung, whereas my Dad only has a solitary nodule. He said because of where the nodule is located and its small size, it will not be possible to do a biopsy, so a lobectomy would be indicated after he gets Dad's PET scan results.


The pulmonologist did give Dad's rheumatologist the go ahead to start going heavy on his WG treatment, but that just doesn't seem as important anymore. Sigh...


I think I am still in shock. I just wasn't prepared for it to be anything more than WG in his lung. I mean I knew there was a possibility, but I guess I was being too Pollyanna.

Hi Lindsay, (watch out, I'm a total rambler, got you beat by a mile)

I'm so sorry for what you're going through right now. I wish that on no one.

I say that because we were in the same boat at my diagnosis. I was in the hospital after trying to find an answer for five months, and the ER doctor told me right out that I have cancer in my lungs that has metastasized from who knows where. My husband was a four hour drive away with my three year old daughter, and he told me that the only thing I can do is start 'making plans'. I also had nodules in my lungs, one lung actually - left lung, and they were substantially large. They did do a biopsy, and the team I had brought a pathologist in the room so that we know right there and then. (Weggies Unite: How it all started (http://weggiesunite.blogspot.ca/p/how-it-all-started.html)) I had Wegs, and funnily enough it was the best news in the world. I figured it was the Universe's way of giving me perspective. Ever since I've been grateful in a sick sort of way...

Biopsy is the only conclusive way to tell you have WG.

The other stuff is all 'circumstantial evidence'.

Also the medical profession will do their darn-est to not diagnose WG, I think it's because the treatment sucks so much. I am willing to put down a wager that the TB they speak of with your dad has nothing to do with TB. Why they are so willing to go in the direction of TB when autoimmune hits 20% of the population, I have no idea. Well I do. Because the treatment for each is not only opposite, but also can negate the other.

I think though that if your dad's doctor found WG in a biopsy, then that needs to be treated pronto. IF the pulminologist is right and there is a risk of cancer, then the treatment for the WG will not contradict the treatment for the other possibility. I'm willing to bet that the cancer scare is not cancer either. I've talked to so many people that are treated for the wrong thing by the medical profession who is a bit in the dark on this, all while avoiding treatment for the right thing... lungs, heart, neuropathy, sinus, and on and on.... if you've got WG and know it from a biopsy, I think the assumption should be that if the disease is not under control, anything else that is weird or out of the norm is directly related to the WG. I think this is a life saving strategy to live by. Also I don't trust anyone who uses the term "typically in WG ....." although all our stories sound similar in so many ways, each and everyone of them has something that is different from the others. There is no 'typical' in WG, so don't let that statement get you going. Trust your gut.

Best of luck, and I think you go with the biopsy and demand treatment for your daddy. Sounds like you know what you're talking about when it comes to med-world. Even the best docs are in the dark when they have no experience with this disease. That's why it's so important to find a doc who has a good history with this, as it is just as much science as art when it comes to treatment and keeping on top of this elusive little problem child, Wegener's Granulomatosis. Most of the post diagnosis mortality with WG comes from either over treatment or under treatment, so finding the right doc is crucial to longevity.

There are some great stories on my blog from other Weggies. Feel free to check them out so that you can see the full struggle and outcome of some of them. Weggies Unite: Other Weggie Stories (http://weggiesunite.blogspot.ca/p/other-weggie-stories.html)

Big hugs!

marta

[Debbie C]

Hi Cindy, I've been reading all the posts and I want to first welcome you to our "family".I am sorry with everything that is going on with your dad. I know how scared you all must be. This disease will hit you out of nowhere. I was glad to hear his mouth and sinuses seem to be getting better. I have involvement in my lungs, and at first first they that I had lung cancer also. They tried doing 2 needle biopsies but could not get enough to dxed. So I ended up having a partial right middle lobectomy which showed wg.At first I had several cm size nodules but with treatment they went away. I currently have 2 mm size but there was a time when I just had 1. So for them to say it is not wg because there is only 1 nodule is not true.Rituxan usually takes time to work but the pred is probably what help heal his gums and sinuses and given time it will probably clear or at least shrink that nodule. Even if you get a neg anca blood test back that does also not mean he doesn't have wg. I know you can't entirely rule out cancer but it looks more likely he has wg than anything else.I would give the meds a chance to work before you have such an invasive procedure like a lobectomy.I also go to the Cleveland Clinic and you get get in usually the same week. My thoughts and prayers are with you and your family and I am sure your Dad will start to heal soon. Keep us posted:hug2:

[LindseyRN]

You guys are so great and so supportive. I appreciate every single one of you! ^^^^

My Dad went back to the pulmonologist this morning just to have his TB skin test read (negative). When he asked if they had scheduled his PET scan, they told him the scheduler was out of the office for the day and for him to check back on Monday. 72 hours is a long time for my impatient father to feel as if he isn't moving forward! I honestly don't see why a scheduler has to make his scan appointment. Could they not just fax the doctor's order to the imaging center so the imaging center can call my Dad to make the appointment? I used to be an outpatient CT nurse and that's how it worked. I don't get it.

Monday I should be home from work midday and I plan to make a call to Cleveland Clinic. The only medical records I don't have full access to are from his ENT visits, because I didn't go with him to those appointments. I will have to talk to my sister to see if she put our names on his release of records paperwork when she went with him. (Yes, we have him spoiled. We fill out all the new patient paperwork for him and just tell him where to sign. Ha ha! He is perfectly capable of filling out the tedious forms himself, but he doesn't object when we take the clipboard!)

My Dad said he's feeling pretty good today. He said he is not having as much sinus congestion today and when he does have to blow his nose, his mucus is much thinner. He has two more days on his antibiotic and still taking the light dose of prednisone 20 mg. He also mentioned he only had one brief headache today and did not have to take anything for it. I'm still hyper-concerned about his cough. It seems as if his coughing is fewer and farther between though, but he still does have it. Anyway, I'm glad he felt like doing something other than sitting around the house today. He is visiting friends who live near his and my Mom's lakehouse about 40 minutes away.

As for me, I still feel like I could crumble every time I think about my Dad's lung nodule. What if...what if...what if. It has been consuming my thoughts which makes getting through the day pretty difficult. I sure hope this gets easier for both of us (my Mom and sister too).

((( BIG HUGS TO YOU ALL )))

[pberggren1]

Please keep us posted Lindsey. We are all here for you and your father.

[windchime]

Lindsey first of all BIG HUGS to you and your family :hug3: This is one of the worst parts, waiting for the diagnosis. The scheduler probably also gets the approval from your insurance company before sending to the imaging center. I'm an impatient kind to so I feel you and your Dad's pain.

Just wanted to let you know that I was on the Cleveland Clinic web site today and found that they do online second opinions. Basically you send all your info in, pay $745 or $795 (insurance doesn't cover it), and they forward it to one of their docs to evaluate and complete the second opinion. You can get all the information on the web site. This maybe more palatable to your Dad than making the trip to Cleveland. It takes them 10-14 days to complete.

[Alysia]

just to say, that it is important to give the new docs, the CT itself (the disc) and not only the interpretation of it. another doc can see it in a different way. good luck and lots of hugs to you and to your family. with such devotion I believe that your dad will be soon just fine.

[Rose]

Hi Lyndsey

Just wanted to tell of my experience. I was diagnosed in 2009 with sinus, lung, and kidney involvement. My lungs were covered in 'nodules' which disappeared with treatment. In March 2010 a malignancy was picked up on a routine chest x-ray. I was then sent for a CT scan the result being that the radiologist and the pulmonologist were pretty certain it was scar tissue formation from WG but to be sure they monitored me for the next year with 3 monthly x-rays. There was no change in size or shape so scar tissue was the final diagnosis.

Fast forward to June 2013. Had a scan of my kidneys to check on some cysts and in the 'lung window' they saw a spirculated lesion which was diagnosed by the radiologist as a primary neoplasm. I took the CD of the scan and the report to my pulmonologist who was I must say, more than a little concerned which surprised me as the lesion was in the same place as in 2010 and then it was diagnosed as scar tissue Apparently the word spirculated was what was concerning her as this was new and is only seen in cancer. I was told that although the lesion was in the same place things can change and chances are I would need surgery. But just to make absolutely sure she took all x-rays and the scans taken before diagnosis and post diagnosis and got a few senior radiologist to review them. Three days later I got the news that is was most certainly scar tissue and that no follow up was required. It was a very scary time.

Keep the hope. A second opinion is required here. The fact that he has other symptoms which are definitely being caused by WG makes me think that it probably is WG related. The problem here is he has no previous x-rays or scans to compare so he will almost certainly require some sort of surgery to biopsy the lesion.

It will be a tough journey ahead but there is light at the end of the tunnel,

Rose

[LindseyRN]

Lindsey first of all BIG HUGS to you and your family :hug3: This is one of the worst parts, waiting for the diagnosis. The scheduler probably also gets the approval from your insurance company before sending to the imaging center. I'm an impatient kind to so I feel you and your Dad's pain.

Just wanted to let you know that I was on the Cleveland Clinic web site today and found that they do online second opinions. Basically you send all your info in, pay $745 or $795 (insurance doesn't cover it), and they forward it to one of their docs to evaluate and complete the second opinion. You can get all the information on the web site. This maybe more palatable to your Dad than making the trip to Cleveland. It takes them 10-14 days to complete.

Thank you for this information. I will certainly be talking to my Mom and Dad about it this weekend.

[Lilly]

Hi Lindsey, I am so sorry for the pain and fear your Dad and family are going through. I know the fear, I know the pain, I know the worry. I was diagnosed in 1990, I was 25. I am 48 and my wegeners started in my sinuses and lungs. All my lung tumors (I am told I had many) except one which I still have and has not changed in all these years, are all gone and left little dots of scar tissue in my lungs. Not much problems at all in my lungs all these years, and my Rheumatologist put me on Bactrim DS in 1992 because the disease was so unknown at that time, and studies done at UAB in Birmingham, Al. at that time, thought the use of the Bactrim DS helped keep the lungs from getting infections and other issues. I know of no other wegeners pt that has been on this treatment. But is seems to work for me. As you can tell from this site, every wegeners pt is sooo different. I think the main thing is to get the symptoms under control. Thats what they did for me. I was in terrible shape, could not walk, all my joints were inflamed, I had to crawl to get somewhere, like to the restroom. When my Mom took me took the ER, I was pretty close to being beyond help. They attacked the dz (once they realized what it was, which took about 3 days and 4 different specialists)with 80 mg of prednisone, crazy amounts of antiobiotics, and I dont know what else. I was like a new person in 2 wks, but far from better. still had to walk with a cane, had vasculitis in tips of fingers and toes, could not button a button. But I was feeling a lot better. And its been 23 years, several different ups and downs.....different meds, and just have kind of settled into always being on 5 mg prednisone, still am. But I have no nose, I have had 2 total nose reconstructions, wegeners eats cartlidge, so I have plastic holding up my nose. This pic is my "before wegeners" pic. But I do not look deformed at all, people never ask me what happened to my nose. But inside, I dont know if I can describe my nose. Basically, My EENT said yesterday, I do not have any cartlidge, absolutely none in my nose, it is an open cavity. I have glass jones tubes in the corners of each eye that go into my nose cavity for my tears to drain into. I irrigate daily to keep crusting out and keeping my nose clean so I can breath. Is it painful? Yes. teeth ache constantly, face throbs. So now I have to take Opana, which helped wonderfully, but it is so expensive, now I have to take Morphine 60er and Morphine 15ir for breakthrough pain. Keep in mind that your Father is being diagnosed 23 years after me, so a lot more is known about it. But as you see on this site, many different drs do many different things. So I would stay on top of the doctors and reasearch, get him feeling better soon if he can physically take it, and just keep close to every thing that is done to him. My first dr always asked me what I felt like was going on in my body. He took my feelings very seriously, because I was one of only 2 wegeners patients he had, and he was working with another dr from UAB and learning himself. I feel his intuition, study of the dz, listining to me about how I felt, all helped me live a very active life for many years. I am doing ok now. But lots has happened, and I am going thru personal issues that make me feel sad sometimes, so im fighting that as well as the dz! BLA!!!! Ill be thinking of yall and I want to check and see how your dad is doing. Try not to be afraid, and research, and being a nurse, you know, sometimes you have to give your opinion to your dr! I have many times....... :) Take care, and prayers will be coming from me to your Father and family.....

[Lilly]

I totally agree with u Phil. I do hope they are able to get things going quickly. All doctors are different, but with this dz being so aggressive, the sooner the beter!!

[LindseyRN]

Hi Lindsey, I am so sorry for the pain and fear your Dad and family are going through. I know the fear, I know the pain, I know the worry. I was diagnosed in 1990, I was 25. I am 48 and my wegeners started in my sinuses and lungs. All my lung tumors (I am told I had many) except one which I still have and has not changed in all these years, are all gone and left little dots of scar tissue in my lungs. Not much problems at all in my lungs all these years, and my Rheumatologist put me on Bactrim DS in 1992 because the disease was so unknown at that time, and studies done at UAB in Birmingham, Al. at that time, thought the use of the Bactrim DS helped keep the lungs from getting infections and other issues. I know of no other wegeners pt that has been on this treatment. But is seems to work for me. As you can tell from this site, every wegeners pt is sooo different. I think the main thing is to get the symptoms under control. Thats what they did for me. I was in terrible shape, could not walk, all my joints were inflamed, I had to crawl to get somewhere, like to the restroom. When my Mom took me took the ER, I was pretty close to being beyond help. They attacked the dz (once they realized what it was, which took about 3 days and 4 different specialists)with 80 mg of prednisone, crazy amounts of antiobiotics, and I dont know what else. I was like a new person in 2 wks, but far from better. still had to walk with a cane, had vasculitis in tips of fingers and toes, could not button a button. But I was feeling a lot better. And its been 23 years, several different ups and downs.....different meds, and just have kind of settled into always being on 5 mg prednisone, still am. But I have no nose, I have had 2 total nose reconstructions, wegeners eats cartlidge, so I have plastic holding up my nose. This pic is my "before wegeners" pic. But I do not look deformed at all, people never ask me what happened to my nose. But inside, I dont know if I can describe my nose. Basically, My EENT said yesterday, I do not have any cartlidge, absolutely none in my nose, it is an open cavity. I have glass jones tubes in the corners of each eye that go into my nose cavity for my tears to drain into. I irrigate daily to keep crusting out and keeping my nose clean so I can breath. Is it painful? Yes. teeth ache constantly, face throbs. So now I have to take Opana, which helped wonderfully, but it is so expensive, now I have to take Morphine 60er and Morphine 15ir for breakthrough pain. Keep in mind that your Father is being diagnosed 23 years after me, so a lot more is known about it. But as you see on this site, many different drs do many different things. So I would stay on top of the doctors and reasearch, get him feeling better soon if he can physically take it, and just keep close to every thing that is done to him. My first dr always asked me what I felt like was going on in my body. He took my feelings very seriously, because I was one of only 2 wegeners patients he had, and he was working with another dr from UAB and learning himself. I feel his intuition, study of the dz, listining to me about how I felt, all helped me live a very active life for many years. I am doing ok now. But lots has happened, and I am going thru personal issues that make me feel sad sometimes, so im fighting that as well as the dz! BLA!!!! Ill be thinking of yall and I want to check and see how your dad is doing. Try not to be afraid, and research, and being a nurse, you know, sometimes you have to give your opinion to your dr! I have many times....... :) Take care, and prayers will be coming from me to your Father and family.....

Wow, Lilly. I'm sorry you have had to go through so much due to Wegener's. Twenty-three years is a long time to have to fight such a beast of a disease. I'm sure at times things have felt hopeless for you, but it sounds like you are a stronger person in many ways because of it too. After reading so many posts on this board, I believe this applies for everyone here as well. Thank you very much for sharing your story with me. I wish you so many more good, healthy days ahead. :hug1:


Collectively, the WG information and personal stories I am reading here are putting together pieces of a gigantic jigsaw puzzle for me. In turn, I am able to see things more clearly and have more peace of mind. I am still quite anxious about my Dad's lung nodule, but I do have hope that he will be okay and I am armed with more information because of all of you. You all are helping me help him and I am so grateful. Sharing all that my Dad and my family are going through has also been therapeutic for me as well. I promise to keep updating all my new friends here as my Dad's treatment progresses.

[annekat]

Not much problems at all in my lungs all these years, and my Rheumatologist put me on Bactrim DS in 1992 because the disease was so unknown at that time, and studies done at UAB in Birmingham, Al. at that time, thought the use of the Bactrim DS helped keep the lungs from getting infections and other issues. I know of no other wegeners pt that has been on this treatment. But is seems to work for me.
Actually, Lilly, a lot of us are on Bactrim DS (or generic or other brand names for the drug), including me, for the same reason that your docs put you on it back in those days. So, your docs were smart. It is also said by some that Bactrim DS helps to keep people in remission. Of course, they should have also had you on an immunosuppressant such as Cytoxan as well as that and the prednisone. It isn't clear from your post here, but I seem to recall that you may have been on CTX, too. I don't remember.

[Lilly]

Hi Anne, oh yes! I can't believe I forgot!! I WAS on cytoxan for a few months at first, then weaned off. And I now recall y'all telling me about some if y'all being on Bactrim......my memory is not very good. I have to write EVERYTHING down. I have a calendar that's like a thin spiral notebook. I write everything in it, it like an appt book plus journal all in one! Lol.
Y'all keep me straight on here! Thanks Anne! Talk to y'all soon....:)

[annekat]

Hi Anne, oh yes! I can't believe I forgot!! I WAS on cytoxan for a few months at first, then weaned off. And I now recall y'all telling me about some if y'all being on Bactrim......my memory is not very good. I have to write EVERYTHING down. I have a calendar that's like a thin spiral notebook. I write everything in it, it like an appt book plus journal all in one! Lol.
Y'all keep me straight on here! Thanks Anne! Talk to y'all soon....:) Lilly, you are excused for not remembering everything all the time, after all, you are a Weggie! We all keep each other straight on here, or try to.

I love your new avatar! You are cute! And I love your "y'all". I have some cousins in Georgia, who of course say "y'all". I think if I went and visited them, I'd be saying "y'all" within a week!

[LindseyRN]

Just a quick update. My Dad's PET scan is scheduled for Tuesday morning 2/18 and then he will follow up with his pulmonologist on Monday 2/24 for the results.


He is still feeling pretty good he says. I can hear him sniffling when I talk to him on the phone though and he admits his sinuses are continuing to drain. He says his sinuses symptoms are worse if he goes outside into the cold air. Is this true for anyone else? I'm curious about it.


He is hardly coughing anymore. We had a 30-minute phone conversation the other day and I made it a point to listen for a cough the entire length of the call. He did not cough one time. I am really glad about that. He also says his headaches are getting fewer and far between.


My Dad's next appointment with his rheumatologist is Friday 2/21. I'm sure at this appointment she will be increasing his prednisone from the 20mg/day dose he is taking now and start him on Rituximab. I am still working on getting him up to Cleveland Clinic, but he is insistent that we wait and see what the pulmonologist says about his lung nodule first. I'm hoping that since he is no longer with a cough, maybe his lung issue is beginning to clear up. I am hoping and praying for this so much.


I hope you all are feeling well and staying warm and dry today. We are getting a lot of winter weather here in the Southeast...at least a lot for us! I can't wait for warm weather to get here, but for right now, yay for the snow day! :biggrin1:

[Dirty Don]

Don't know what a 'snow day' is anymore...BUT, your dad seems to be on the right track. I'm hoping the nodule is a leftover from WG damage and not what you think. I have a couple small ones left from the first onslaught of WG...may be just that. Glad for your dad...keep it up!

[windchime]

Glad to hear that he has things scheduled and they seem to moving right along. Good luck with the PET scan. I found and old CT Scan of mine that also showed spiculated borders. It turned out to be WG's. I too had a PET scan after that. All was well it was only WG's. Keep us posted please and enjoy your snow day.

[MikeG-2012]

He is still feeling pretty good he says. I can hear him sniffling when I talk to him on the phone though and he admits his sinuses are continuing to drain. He says his sinuses symptoms are worse if he goes outside into the cold air. Is this true for anyone else? I'm curious about it.

I've come in from the cold and blew out an obscene amount of crud, so I guess my answer is yes, the cold does have an effect. Seem plausible that the cold does reduce inflammation, and that cold air would make sinuses feel different after being out in the cold for a while.

If he hasn't already, you should get him on a frequent nasal flushing routine. Go with the squeeze bottle type of rinsing devices, as they work 1000 times better than the trickling through netti-pots. Go to your local pharmacy and look for NeilMed product--that is the most common brand out there. Without my nasal rinsing regimen, I would be in serious trouble with the damage the disease has done to my sinuses. Was just at the ENT today, and he said the lining is continuing to improve at each visit, so I am to keep up my same rinsing activities.

[MEustace]

Hi Lindsey -
I just joined this site a few weeks ago almost for the same reasons for my mother. The only difference is that she's having a "flare" as she was diagnosed 20+ years ago with this.
Keep yourself armed with the knowledge of what you learn from this site and other places of information.
My mother is currently in the hospital and the plan is to start the Ritux soon after they make sure there is no other infection.
Have your dad keep a notebook himself so he can take hold of his symptoms and medications and always have handy.
Good luck! I'm with you in spirit!

[LindseyRN]

Hello everyone. I hope you all are doing well. We had snow and an ice storm here last week that kept most of the state homebound for three days and today the high temperature was 76°! Tomorrow it's supposed to reach 82. Weather in the South is nuts, y'all! :razz:


I've been kinda MIA for a week with nothing much to report. I wish I had good news to share, but all that has happened is my Dad went for his PET scan yesterday. I called him from work after and he was so emotional. My strong, robust Dad was so frightened and kept choking up while telling me about it. I wish I could take all this away from him and put it in me. My family is really struggling with the what-ifs. I'm sure the prednisone Dad has been taking isn't helping his emotional state either. My heart really aches seeing him this way.


Physically, he says he feels good. His only complaint has been his sinus issues and that had gotten better until it turned warm this week. I've noticed weather changes really affect his sinusitis. I mean, why would it not? Change in weather has always affected my sinuses. He hasn't had much of a cough at all in 10-12 days and his headaches are fewer and far between.


I'm going to my Dad's rheumatologist appointment with him on Friday and I am going armed with a list of questions for her. One of the things I would really like us to discuss besides his treatment plan is if it would be beneficial for my Dad to start taking something that would help his labile moods while on prednisone. Also, maybe something that he could take occasionally to help him sleep. (I have already discussed this with him by the way.) My Dad is not due to go back to his PCP until mid-May and says with all his recent specialists visits, he refuses to move his PCP appointment to any sooner. Do you think these questions are appropriate for his rheumatologist?


Thank you so very much for being educators and a "sounding board" for me. ((( great big hugs )))

[MEustace]

I would say that ANY questions are better than none at all. Perhaps an exercise regimen would assist with alleviating a stressful situation plus probably stressful thoughts on all of this. If your Dad can talk with someone that would also be helpful too - I think it's better for the person going thru this stuff to be able to associate with others going through the same events/symptoms.
All the best - keep your strength about you -

[Dirty Don]

A good comfortable workout/physical regimen has helped me a lot...also helped keep me from falling into the WG abyss many times. Also, I use Lexapro regularly (serotonin loss) and keep Xanax at my hip...helps with both worrying and sleep and no side effects. Best to you & your dad...his reactions at this time are very understood...at our ages, mortality is also an issue at times and it needs balancing...sighs...

[Lilly]

Gosh, it sounds like things are moving along rather well....He has come a long way! And you are doing a fantastic job of taking care of his appointments and other issues he needs help with. It is so difficult to see someone you love being afraid, and especially your normally strong robust Dad, breaking down a little while talking with you. My Mom says the same thing about me that you said about him. She wishes she could take it from me, she would take it on herself. That breaks my heart, but its Love, and I am fortunate to have a Mother and family I do. Your Dad is so lucky to have you and your family. Going into the Dr. office with Notes is the BEST thing you can do! Also write down the answers he gives you (like you were not planning on doing that!!!) I think it is TOTALLY appropriate questions to ask regarding the medication to help him. I know it may be difficult to your Dad to have to take more medication, but if it is for the best for him, he really needs to if the Dr. agrees......Getting enough sleep is so important, and that darn prednisone will keep your eyes propped open ALL NIGHT!! So just a little something to help him sleep, and something to keep him from being down and depressed are 2 things that I think are good for his health as he is fighting this disease! I wish you and your Dad all the best, and cant wait to see what the Rheumatologist says. I think you are doing SUCH a GREAT job with your Dad! That is something else that is healing,......your Love and Caring. Keep on letting us be a "sounding board" for you! YOU need support too, and thats what we are here for! ((HUGS)) :)

[Lilly]

Hi Mike, I use the NeilMed bottle too, have for years, but I was wondering how much damage your sinuses have? Like, do you still have a septum? Do u have lots of crusting and have to really clean your nose a lot? You may have posted this info before, but I havent seen it, and was wondering. My sinuses are the main target of this dz.

[MikeG-2012]

Hi Mike, I use the NeilMed bottle too, have for years, but I was wondering how much damage your sinuses have? Like, do you still have a septum? Do u have lots of crusting and have to really clean your nose a lot? You may have posted this info before, but I haven't seen it, and was wondering. My sinuses are the main target of this dz.

The lining of my right sinus is completely destroyed. My most recent flare was all sinus, nothing else. My migraine headaches were from my sinuses, which my ENT described as "looking like a kids scraped knee when he fell off his bike." I do have a perforation in my septum, small, but there. My left side isn't as bad as the right but the lining is still damaged. Both are slowly starting to recover, but still take a good cleaning by the ENT every two weeks to keep the crusts under control.

I've moved form the bottles to a Waterpik and run 3 liters of saline through my sinuses twice a day with it. That is the single best thing I've done in the past two years is running the oodles of saline through. ENT can't believe that I have kept that rinsing regiment.

[LindseyRN]

Ugh...so my Dad's rheumatologist appointment yesterday didn't go as well as we had hoped. She was not happy that the ENT did not do a sinus biopsy. She said she had talked to the ENT prior to my Dad's appointment, told him that the sinus CT showed sinus wall thinning and inflammation, and she wanted a biopsy to possibly confirm Wegener's. She read aloud the ENT's office note that basically said: patient's oral lesions have cleared, there is still some inflammation in left nasal passage, overall patient presents a good deal better than last visit, recommend continuation with pulmonary nodule evaluation, do not see a need for sinus biopsy at this time. I could hear the anger in her voice as she read this and she said he would certainly be receiving a call from her.


The rheumatologist went on to talk about how neither of my Dad's CTs mentioned having granulomas present in the reports and she would like to have a more solid foundation for Dad's Wegener's diagnosis before she blasts him with Rituxan. She said he could have a chronic allergy sinusitis that she does not want to treat with potentially harmful medications and needs a sinus biopsy. She also said since my Dad is feeling a lot better (his words, by the way) she does not feel the need to rush and if she did, she would be admitting him to the hospital to watch him closely. Without vital organ involvement, she thinks this would be unnecessary.


His rheumatologist also talked about Dad's lung nodule that is a priority right now. She said (as the pulmonologist also told us) that it does not look like Wegener's, because it is a solitary pulmonary nodule and with Wegener's lung nodules are present as multiple and bilateral. She does not want to start Dad on Rituxan that could interfere with his lung treatment if the nodule is a malignancy.


So what little progress we did make...


She is keeping Dad on prednisone 20mg daily and started him on Methotrexate 2.5mg and he is to take four tablets once a week. She said it takes about 6-8 weeks to build up levels and begin taking effect, but she feels this is the safest path to take right now until we get more information regarding Dad's sinuses and, more importantly, his lung nodule. She also (per our request) prescribed an SSRI to hopefully help with how emotional he has been. Although she is NOT warm and fuzzy, I could tell in her eyes she was frustrated FOR my Dad (and maybe even apologetic? I don't know...). She even made an attempt to get his PET scan results during the visit, so she could at least go on something for him, but the office had closed at noon.


Big sigh...:crying:


So that is where we are. We will all be going with Dad to his pulmonologist appointment on Monday to get his PET scan results and plan the next steps for him regarding his lung nodule. I am so dreading this appointment. I feel like this far it has been nothing but uncertainty and bad news. I prayed yesterday for us to hear something good—anything positive at all—but it didn't happen. At least we were able to go and have big barbecue lunch after. Barbecue always makes him smile.


Thank you all again for continuing to "listen."

[annekat]

The ENT sounds arrogant and difficult. It would not be that hard to just do a sinus biopsy. Mine was done on the spot and didn't take long. We know they are not always conclusive, but you need to get a dx. Mine WAS conclusive. It is easier than a lung biopsy. The lessening of inflammation in the nose could be because of the pred your dad has been taking. I don't think it means he doesn't have Wegs. I hope your rheumy can get him to do it or find another ENT who will. Just my two cents worth.

[LindseyRN]

The ENT sounds arrogant and difficult. It would not be that hard to just do a sinus biopsy. Mine was done on the spot and didn't take long. We know they are not always conclusive, but you need to get a dx. Mine WAS conclusive. It is easier than a lung biopsy. The lessening of inflammation in the nose could be because of the pred your dad has been taking. I don't think it means he doesn't have Wegs. I hope your rheumy can get him to do it or find another ENT who will. Just my two cents worth.

We agree and this is the plan. I have a good feeling his rheumatologist will make it happen.

[Alysia]

[A solitary lung lesion in Wegener's granulomatosis... [Ryumachi. 2003] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/12692988)

[LindseyRN]

[A solitary lung lesion in Wegener's granulomatosis... [Ryumachi. 2003] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/12692988)

:wub: Thank you you for this! I will take (and hold on tightly to) all the hope I can get my eyes on right now.

[pberggren1]

Seeing as the Rhuemy put your dad on MTX it sounds like she is fairly certain he has Wegs.

[LindseyRN]

Seeing as the Rhuemy put your dad on MTX it sounds like she is fairly certain he has Wegs.

In all honesty, I think she is still floundering a little. I think she looks into my eyes and sees sort of a desperation to get him feeling better. Yesterday she even said the reason she prescribed the prednisone and antibiotic during his last visit is because she saw how upsetting my Dad's condition was to my sister and me and wanted to start at least minimal treatment even if we don't have a positive biopsy of the sinuses or lung. I have a feeling her prescribing the MTX is for the same reason: it's generally safe and will pacify us until she can confidently make a WG diagnosis. :unsure:

That may read harsher than I intend. We really do have confidence in her ability to treat him.

[windchime]

In all honesty, I think she is still floundering a little. I think she looks into my eyes and sees sort of a desperation to get him feeling better. Yesterday she even said the reason she prescribed the prednisone and antibiotic during his last visit is because she saw how upsetting my Dad's condition was to my sister and me and wanted to start at least minimal treatment even if we don't have a positive biopsy of the sinuses or lung. I have a feeling her prescribing the MTX is for the same reason: it's generally safe and will pacify us until she can confidently make a WG diagnosis. :unsure:

That may read harsher than I intend. We really do have confidence in her ability to treat him.

As my rheumy recently told me, "the issue is the tissue." They want a positive biopsy, but unfortunately that doesn't always happen. My lung nodules have always presented one a time. Current is single nodule in the upper right lung. So I don't get why they are hanging onto the bilateral nodules thing. Sorry things didn't turn out the way you wanted them to. Hopefully you will have more answers on Monday and they will be positive. Try and have a restful weekend. :hug2:

[annekat]

I have heard of people going ahead with treatment even without a positive biopsy. It sounds like your rheumy is doing OK with the info she has and still intent on getting the full picture. True, if your dad turns out not to have WG, the MTX won't have hurt him. If he does have it, you should see some improvement in a few weeks, I would think.

[Alysia]

I never had positive biopsy. but I def have WG.

[marylz]

Same here Alysia. Sometimes the symptoms are overwhelmingly WGs and a biopsy is inadvisable.

[LindseyRN]

An update for everyone:

We just returned from my Dad's pulmonologist appt. a little bit ago. We are mostly happy with the news. It's the best case of a worst case scenario. The doctor said the 1.5cm nodule did light up on the PET scan, but just to be sure of what kind of nodule it is, he wants to biopsy it next Monday. The PET scan report said the small nodule is highly suspicious of malignancy but neither infection nor inflammation can be completely ruled out. The doctor said even if the biopsy comes back negative, he still wants to remove his left upper lobe to be cautious. The good news is that Dad's surgery can be done laparoscopically (VATS) and will be curative, because it was caught early and he has no other nodules or enlarged lymph nodes anywhere in his body. The pulmonologist said this is great news and my Dad will be fine. We hate that he has to go through all this, but once it's all over, he should be okay.

We are assuming further WG treatment will be on hold until after his biopsy and subsequent surgery. I called and left a detailed message with his rheumatologist's nurse.

I will post his PET scan results tonight so I can get any opinions you all my have on that.

[pberggren1]

I would think that the mtx would be on hold now til after the surgery. What did the pulmy feel about that?

[LindseyRN]

I would think that the mtx would be on hold now til after the surgery. What did the pulmy feel about that?

He didn't mention it. I called and left a message with the rheumatologist's nurse today regarding the plan for biopsy next Monday and surgery most likely week after next. I figured the thoracic surgeon would make the call on which meds he needs to stop. I do want to get all that straight ASAP so there won't be any delay with removing the nodule.

[LindseyRN]

Below is the significant part of my Dad's PET scan results. Basically, the entire report up to this portion states everything is normal and unremarkable.

PET portion of the study: The biodistribution of the radiotracer is unremarkable. Focal hypermetabolic activity is noted throughout the left upper lobe mass with maximal SUV uptake of 6.3. This is highly concerning for neoplastic change and not due to granulation or inflammatory tissue. Recommend biopsy. No abnormal focal high hypermetabolic activity elsewhere in the lung parenchyma, mediastinum, osseous structures, liver, adrenal glands, or retroperitoneum.

Impression: Abnormal PET CT with focal hypermetabolic activity throughout the oval spiculated 2.0 x 1.3 cm left apical lung nodule. No evidence of locoregional or distant metastatic disease. This is concerning for primary lung neoplasm. Recommend biopsy. Remotely, this may indicate focal inflammatory or infectious process.

So the radiologist says "...and not due to granulation or inflammatory tissue," but then closes his report with "...this may indicate focal inflammatory or infectious process." So which is it? The pulmonologist said it would be removed despite the biopsy result, so I guess it doesn't matter...but what if it is only inflammation or infection? A lobectomy is too a big surgery for uncertainty in my opinion...:unsure:

[Alysia]

I would think that the mtx would be on hold now til after the surgery. What did the pulmy feel about that?

as far as I know, it is also better to be without pred if possible. I was told so.

[LindseyRN]

as far as I know, it is also better to be without pred if possible. I was told so.

Yes, I would think so too. Prednisone decreases healing time, increases risk for infection, etc. I'll make sure the surgeon looks over his current medications thoroughly.

[LindseyRN]

I'm not 100% convinced my Dad's nodule is a malignancy despite the PET scan. I'm neither in denial nor naïve. I just still feel like it could be Wegener's. Does that sound crazy?

[windchime]

I'm not 100% convinced my Dad's nodule is a malignancy despite the PET scan. I'm neither in denial nor naïve. I just still feel like it could be Wegener's. Does that sound crazy?

Not at all Lindsey. There are many here that have been misdiagnosed for years. In addition, he did have a positive ANCA and biopsy for granulomas if I remember correctly. You're just being realistic. Keep the faith and get some rest too.

[LindseyRN]

Not at all Lindsey. There are many here that have been misdiagnosed for years. In addition, he did have a positive ANCA and biopsy for granulomas if I remember correctly. You're just being realistic. Keep the faith and get some rest too.

Thanks for the vote of confidence, Cindy. I've read numerous sources that say many lung malignancies are found on chest x-ray or chest CT incidentally (as in my Dad's workup for Wegener's), so I well understand that he could be a member of this group. It just seems so...coincidental, I don't know. The strawberry gum lesions, the constant sinusitis, sinus headaches, his dry cough (which has been nearly absent for over 2 weeks now), and the lung nodule that is typical of Wegener's are all fairly textbook WG.

My Dad did have a positive ANCA, but the only biopsy he has had was from his gums. The pathology report from his gum biopsy basically said "suspicious for Wegener's." The rheumatologist is not satisfied with this report, because the terms granuloma or granulomatous was not used to described the tissue.:unsure:

As I have mentioned before, the pulmonologist is just so sure that it's a cancer tumor and he likely feels "backed up" by the PET scan. I'm glad the nodule can be biopsied (during our first visit he said it's too small). I will feel better about the lobectomy if the pathology results a positive though and it would surely squash my doubts flat.

[LindseyRN]

I've come in from the cold and blew out an obscene amount of crud, so I guess my answer is yes, the cold does have an effect. Seem plausible that the cold does reduce inflammation, and that cold air would make sinuses feel different after being out in the cold for a while.

If he hasn't already, you should get him on a frequent nasal flushing routine. Go with the squeeze bottle type of rinsing devices, as they work 1000 times better than the trickling through netti-pots. Go to your local pharmacy and look for NeilMed product--that is the most common brand out there. Without my nasal rinsing regimen, I would be in serious trouble with the damage the disease has done to my sinuses. Was just at the ENT today, and he said the lining is continuing to improve at each visit, so I am to keep up my same rinsing activities.

Mike, I just wanted to update you—my Dad started doing the squeeze bottle sinus rinses last week. He rinses first thing in the morning and at bedtime and this is making a BIG difference for him! Dad and I thank you for your advice!:biggrin1:

[MikeG-2012]

Mike, I just wanted to update you—my Dad started doing the squeeze bottle sinus rinses last week. He rinses first thing in the morning and at bedtime and this is making a BIG difference for him! Dad and I thank you for your advice!:biggrin1:

(insert evil laugh here) "I've converted another one!"

In all seriousness, YOU MADE MY DAY!! I am SO GLAD that he is doing it and that he is noticing the difference. If it is helping and he thinks that doing it more often would benefit him, my ENT tells me that I cannot over-rinse.

If he wants to save some cash from buying packets of saline mix, use 1 teaspoon salt (pickling and/or canning) and 1/4 teaspoon baking soda per liter of water.

Tell him I'm proud! (-8

[annekat]

Lindsey, my pulmonologist also doubted that I had Wegs. There was no large nodule involved, just a lot of smaller lesions. He was proved wrong by a nasal biopsy. Sometimes they are just stubborn. I know of at least one person on here who had a large lung mass thought to be cancerous which turned out not to be. I think it turned out to be a rare, non-cancerous tumor. However she DID, and does, have WG. I would not give up if you think your dad may have it. As far as whether the mass should be removed, and under what circumstances, that is beyond me to judge. Best of luck, and continue to be persistent and proactive for your dad. Get a second opinion if you can and feel you need to. Although I guess you still have a biopsy to get results from. If your rheumy continues to doubt it's Wegs, maybe try a different one. I would think a biopsy of the gums would not necessarily be conclusive either way, and just the language that was used by the pathologist should not be a reason to write off the possibility. Some of us on here have really had to push to get a diagnosis.

[LindseyRN]

Lindsey, my pulmonologist also doubted that I had Wegs. There was no large nodule involved, just a lot of smaller lesions. He was proved wrong by a nasal biopsy. Sometimes they are just stubborn. I know of at least one person on here who had a large lung mass thought to be cancerous which turned out not to be. I think it turned out to be a rare, non-cancerous tumor. However she DID, and does, have WG. I would not give up if you think your dad may have it. As far as whether the mass should be removed, and under what circumstances, that is beyond me to judge. Best of luck, and continue to be persistent and proactive for your dad. Get a second opinion if you can and feel you need to. Although I guess you still have a biopsy to get results from. If your rheumy continues to doubt it's Wegs, maybe try a different one. I would think a biopsy of the gums would not necessarily be conclusive either way, and just the language that was used by the pathologist should not be a reason to write off the possibility. Some of us on here have really had to push to get a diagnosis.

Thank you, Anne. I don't think my Dad's pulmonologist necessarily doubts he has Wegener's, he is just certain the nodule in his lung is not Wegener's-related. Maybe a little too certain? By that, I mean that before the radiologist told him a biopsy could be done, the pulmonologist told us during appointment #1 that he was ordering a PET scan and a lobectomy was sure to follow. I thought it was a tad early to make that decision. Now that the plan is for biopsy, the pulmonologist says that despite the pathology report, he thinks the lobe should still be removed.:confused1:

Today the rheumatologist said she is not concerned with getting a sinus biopsy until after the results of the nodule biopsy come back from pathology and micro. My Dad is relieved about that. He knows this is not something his ENT will be able treat, so he'd love to be able to mark that doc off his list! His (our) goal is to get his WG treatment progressing as soon as possible when we get his lung issue dealt with. He says he's willing to go to Cleveland if I thought it best, but doesn't want to go with the uncertainty of his lung nodule. Until then we must take it day by day.

[annekat]

I see that it is very complicated, Lindsey. Since I didn't have a nodule like that, I am not much of one to judge. If the biopsy should show that the nodule is WG related, then a sinus biopsy wouldn't be necessary, but I understand there is much doubt that this is the case. If no WG lung involvement is suspected in other parts of the lungs, and the nodule is not WG related, then it would be pretty hard to get a biopsy showing WG there, and I guess the sinus would be the only option. I'll report that my sinus biopsy was very easy, though not entirely comfortable, but done on the spot without any big to do, and it showed I had WG. My ENT did it but then referred me to someone else for treatment. ENTs are an important part of the team whether they are the ones treating it or not. I sure hope the lung nodule isn't cancerous and tend to support your feeling that the pulmy is jumping to a conclusion. But having it taken out, though stressful, is likely to be OK in the long run, I guess. I'm sorry you and your dad are going through this. I just hope it can be determined soon whether he has WG or not; I don't remember if he has already started treatment just in case, as some do, but I'd hate to see it delayed too long if he indeed has it. Not that I'm hoping he does. Best to you both in getting through this, yes, day by day.

[Rose]

Certainly not to me. With other WG indicators present I think it is highly likely that you are correct though unfortunately they have to find out for sure. A lobectomy is major surgery but this must be the only option available to them. I will bee very surprised if it does turn out to be cancer as many of us have had that initial diagnosis. I was lucky in that a kidney biopsy confirmed the diagnosis of WG after a fine needle biopsy of the lung was inconclusive. Also a spirculated lesion seen 5 years later and reported as primary neoplasm in the lung was diagnosed later as scar tissue by senior Radiiologists who were able to compare past x-rays and scans. So there is hope.

Rose

[pberggren1]

Now convert him to the Waterpik Mike.