Wegs and lymphoma question

[newweg]

I just saw rhumy and all blood normal even though at end of flare up. He had me take pictures. Ulcers on septum got smaller. Increased MTX and prednisone. He now thinks ( as he thought before) I might have lymphoma! I am getting biopsy from ENT next month and blood work. Doc said sometimes Wegs and lymphoma start out looking the same. Mine started with sinus/eye and I have brain lesions..Anyone hear of this? All my ANA has been normal from the start but doc says that means little based on everything else...symptoms, septal ulcers. Getting biopsy this Thurs now!
THOUGHTS?

[Psyborg]

No idea newweg.. I hope they can figure out for certain what is up though. It stinks worse not knowing what you are dealing with.

[newweg]

Sure does, asked the doc which is better Wegs or lymphoma? He said toss up...both bad. Best choice is none (well, we all know that).

[HopeinTN]

Scary. I thought if blood work is normal that was good and not a sign of Lymphoma caused by meds. Hmmm...

[newweg]

No, he thinks he misdiagnosed me, might already HAVE lymphoma. Symptoms I have are same for early stages of lymphoma. We are checking, just in case. If lymphoma same meds just MUCH stronger! :ohmy: Everyday is an adventure!

[HopeinTN]

I hope it gets worked out and you can focus on getting better rather than having to worry all over again about what it is. Keep us posted.

[mishb]

For a few months, in 2011, I was diagnosed with Lymphocytic Leukemia or T Cell Lymphoma.
I was under the care of Oncology and Haematology and the medications were exactly the same - MTX and Pred

After about 4 months they found that I didn't have Lymphoma and that it was just the inflammation in my system that was causing false readings.

I hope all goes well with the biopsy
Take care

[Al]

I just saw rhumy and all blood normal even though at end of flare up. He had me take pictures. Ulcers on septum got smaller. Increased MTX and prednisone. He now thinks ( as he thought before) I might have lymphoma! I am getting biopsy from ENT next month and blood work. Doc said sometimes Wegs and lymphoma start out looking the same. Mine started with sinus/eye and I have brain lesions..Anyone hear of this? All my ANA has been normal from the start but doc says that means little based on everything else...symptoms, septal ulcers. Getting biopsy this Thurs now!
THOUGHTS?What kind of abiopsy are you getting, Susan? Thyroid? Marrow? What? Dunno. I suppose this is possible, but what if it isn't? I am curious about that biopsy.

Al

[newweg]

I have ulcers/lesions on my septum/deep in my nose...he is hoping to biopsy that.

[newweg]

What kind of abiopsy are you getting, Susan? Thyroid? Marrow? What? Dunno. I suppose this is possible, but what if it isn't? I am curious about that biopsy.

Al

Between biopsy and blood work they should know, they hope to do biopsy for wegs too! So if this biopsy goes well it should answer a lot. Before I started meds I did have golf ball size lumps halfway between shoulder and neck, not painful and only happened once, but lasted a day.

[newweg]

For a few months, in 2011, I was diagnosed with Lymphocytic Leukemia or T Cell Lymphoma.
I was under the care of Oncology and Haematology and the medications were exactly the same - MTX and Pred

After about 4 months they found that I didn't have Lymphoma and that it was just the inflammation in my system that was causing false readings.

I hope all goes well with the biopsy
Take care

Was this before or after wegs? Since I have brain involvement, he did say same meds but mtx would be increased substantially and another med added. There were some articles I read that brain lymphoma acts like vasculitis...you respond well especially to prednisone, then boom..meds stop working and you die quickly. Only during autopsy to they discover it was brain lymphoma and meds were not proper dose if not known and one more med is needed for 3 months..heavy duty stuff. So after all that reading, I hope they can get what they need from my nose. He said it is too double check since brain is involved and that is why he thought of it. This last flare made him concerned because my labs for ANA should have been abnormal.

[newweg]

It is called Angiotropic large Cell Lymphoma

[mishb]

Was this before or after wegs? Since I have brain involvement, he did say same meds but mtx would be increased substantially and another med added. There were some articles I read that brain lymphoma acts like vasculitis...you respond well especially to prednisone, then boom..meds stop working and you die quickly. Only during autopsy to they discover it was brain lymphoma and meds were not proper dose if not known and one more med is needed for 3 months..heavy duty stuff. So after all that reading, I hope they can get what they need from my nose. He said it is too double check since brain is involved and that is why he thought of it. This last flare made him concerned because my labs for ANA should have been abnormal.

I was already diagnosed with WG and had a nasal/sinus biopsy to confirm diagnosis.
The other was about 6 months later and was due to high white cell count and high lymphocytes. I am happy to say that they are all nearly at normal range limits now

[Victoria]

In response to wegs and lymphoma connection, my husband is the one with wegs. After a long hospitalization 2 years ago and diagnosis of fungal blastomycosis, through ct scan found his spleen was enlarged with mass. A bone marrow biopsy was done and determined he had "hairy cell leukemia". They often referred to it as lymphoma. Finally after 2 years of treatment for the blasto he took the chemo "cladribine" and is now in remission from that. Hope you get answers soon.

[newweg]

Doc mentioned leukemia to me too. So bizarre. I got a call from Dr. Merkel today. I was scheduled to see him mid July. He put me on cancellation list when I contacted him a few weeks ago. I now see him a week from tomorrow!! May 30th...YAHOO. So the next week or so should be interesting!

[Al]

Doc mentioned leukemia to me too. So bizarre. I got a call from Dr. Merkel today. I was scheduled to see him mid July. He put me on cancellation list when I contacted him a few weeks ago. I now see him a week from tomorrow!! May 30th...YAHOO. So the next week or so should be interesting!This is excellent, Susan! Let us know what he has to say.

Al

[newweg]

:smile::biggrin1::smile1::biggrin::):laugh::smile1 ::thumbup: Will do!

[newweg]

CNS fluid through lumbar puncture should give information, but no one ever mentioned it?

[Al]

CNS fluid through lumbar puncture should give information, but no one ever mentioned it?Yes, a spinal tap would give information, Susan, but what information? Do you suspect meningitis? Or various CNS cancers? Then the LP could tell you something interesting. I do not know that it could say much--or anything--useful about either WG or lymphoma. And there are significant risks involved, not to mention that the procedure is highly annoying. I wouldn't be too anxious to try it.

Al

[newweg]

Yes, a spinal tap would give information, Susan, but what information? Do you suspect meningitis? Or various CNS cancers? Then the LP could tell you something interesting. I do not know that it could say much--or anything--useful about either WG or lymphoma. And there are significant risks involved, not to mention that the procedure is highly annoying. I wouldn't be too anxious to try it.

Al


I has LP about 30 years ago so I agree, at this point I am more concerned about brain lesions which have been ignored mostly until now, the rhumy is hopeful the ENT can biopsy my septum..cant biopsy the brain..on brain stem. I want to find out if lymphoma but mostly need more attention to my brain! Merckel might have answers too.

[Al]

I has LP about 30 years ago so I agree, at this point I am more concerned about brain lesions which have been ignored mostly until now, the rhumy is hopeful the ENT can biopsy my septum..cant biopsy the brain..on brain stem. I want to find out if lymphoma but mostly need more attention to my brain! Merckel might have answers too.Susan, I think most or all of what you need to know can be learned by less invasive measures, like MRI and such, along with antibody tests (not only ANA, either) and, perhaps, some nerve conduction tests. Any full workup (Dr. Merkel can sort this out) would, of course, take into account the possibility of both vasculitis and lymphoma.

Al

[newweg]

Had it all, Al. The MRI (3) since December of my brain shows one large lesion on brain stem and "too many to count" elsewhere, but small. Blood work on everything..you name it, I had it. Maybe I do have both! They have been ignoring the brain and stating 'nothing we can do except watch it". Well, watch it do what? Grow? The location controls my breathing and heart beat! There is something not clicking with all this, ENT tomorrow, neurologist Friday and Dr.Merkel next Weds. I just want answers. I had my blood work, including tests for lymphoma and leukemia today so Dr. Merkel would have results. I even had nerve conducting tests. Waiting game...

[newweg]

Had it all, Al. The MRI (3) since December of my brain shows one large lesion on brain stem and "too many to count" elsewhere, but small. Blood work on everything..you name it, I had it. Maybe I do have both! They have been ignoring the brain and stating 'nothing we can do except watch it". Well, watch it do what? Grow? The location controls my breathing and heart beat! There is something not clicking with all this, ENT tomorrow, neurologist Friday and Dr.Merkel next Weds. I just want answers. I had my blood work, including tests for lymphoma and leukemia today so Dr. Merkel would have results. I even had nerve conducting tests. Waiting game...

Saw ENT today, ulcer in nose responded so well to steroids, too small to biopsy, he suggested a neurosurgeon for a brain biopsy!! Hmmmm, not going there! Not now. I am having sinus surgery next Friday with hopes of cleaning out whatever is causing problem (lots of congestion on and off) and possibly finding something to biopsy. ENT is also confused, only one side of face seriously affected and responds so well to prednisone. Still waiting for lymphoma test, see neurologist tomorrow and pre-admission testing. Tues CT sinuses and Merkel Weds, surgery Friday. With all this...maybe an answer? Soon! My gut says it is all from the brain lesions. Hoping Merkel will send me in direction to answers. A friend of mine was treated for 5 years for Addisons disease, celiac disease and a few more, young guy. When he could no longer walk and made it to Mayo clinic (they don't take my ins) he was diagnosed with Poets Disease, a small malignant tumor was inside his femur and making his whole body go wacko. One tiny tumor fixed with radiation and chemo...better, not great because he still has the other diseases they think came from this malignancy. Maybe they will find a tiny tiny malignant tumor in my sinus they can pop out that is doing all this...Busy week. ENT called me steroid dependent, meaning, that I respond so well, but we slowly are increasing doses.

[pberggren1]

Why a brain biopsy? Is this ulcer close to the brain?

[Al]

Why a brain biopsy? Is this ulcer close to the brain?I'm sure it is because of the lesions, Phil. But I doubt a biopsy would show much more than the MRI, and with a significant risk potential--especially working around the brain stem.

Al

[newweg]

Why a brain biopsy? Is this ulcer close to the brain?

Ulcer is on the septum inside my nose. I have lesions in my brain. A brain biopsy is similiar to any other, they take the bad tissue, in this case a part of lesion from my brain and test it for wegs or lymphoma..like I said..not ready for ANYONE to go in there. So I will wait out the rest of what is happening and see if I get answers.

[newweg]

I'm sure it is because of the lesions, Phil. But I doubt a biopsy would show much more than the MRI, and with a significant risk potential--especially working around the brain stem.

Al
MRI of brain shows lesions but not what kind. NO ONE is going near my brain stem, the doc was talking about the other smaller lesions near the top of my head..I think I rather take my chances at this point with the powers that be....not a doctor poking in my brain!

[pberggren1]

I would not see the purpose in a biopsy of the lesions on your brain. They know you have Wegs so they don't need to prove it. Maybe they think it is cancer?

[newweg]

I would not see the purpose in a biopsy of the lesions on your brain. They know you have Wegs so they don't need to prove it. Maybe they think it is cancer?

Neuorologist said biopsy impossible for brain, problem is they are treating wegs and brain separate and 'watching brain'. I was nice but would not leave without answers and came with many questions. My doc brought in Head of Neuorology and after an hour he did answer me. Like pulling teeth. He told me he learned more about wegs from me tody. I am on right track.

[Al]

Neuorologist said biopsy impossible for brain, problem is they are treating wegs and brain separate and 'watching brain'. I was nice but would not leave without answers and came with many questions. My doc brought in Head of Neuorology and after an hour he did answer me. Like pulling teeth. He told me he learned more about wegs from me tody. I am on right track.Good for you, Susan--the master educator! I hope you are charging for the consultation....

Al

[newweg]

Good for you, Susan--the master educator! I hope you are charging for the consultation....

Al

LOL and I don't take insurance!

[Al]

LOL and I don't take insurance!Or--wait for it--Medic-aid?

Al

[newweg]

Or--wait for it--Medic-aid?

Al

Very clever Al.

:thumbsup::biggrin1:

[newweg]

Met with Dr. Meckel today...love him. I go back in a month. He does not want to 'steal' me from Jefferson, but finds my cse 'interesting. He is not convinced I have wegs and not convinced I do not! I hae been on stroids so long, he thinks something else is going on or going on in additon to wegs. The brain lesion he is ignoring until he feels I have a complete diagnosis. He hopes the brain lesion is there for another reason and feels I would have been happier if we never found it, thinks I will hve it like it is for many years with no issues. I am a half weg but something is cofusing him with my symptoms and he origninally was leaning towards me not having sinus surgery Friday but after examining me, especially my nose, thinks I should proceed. He asked me many time if I did cocaine, snorted it, never did any illegal drugs and never snorted anything. All docs ask me that 5 diffferent ways. He said the inside of my nose looks like I am a coaine snorter! After that, let them look around and see what they find in the sinuses. He doubsts lymphoma but something else. He wants all medical records, reports from past 18 months and all doc notes, OR report on upcoming surgery and all biopsy results, even though he feels biopsy will show nothing do to my steroids, and I lost 5 lbs ths week!! If no great info comes from surgery and after seeing pictures of me off steroids and in a flare up, he wants to take me off steroid, let me get sick...steroids are hiding, masking the problem It does not sound like fun but good point. The pictures of me off steroids do not look like me, he was taken back and feels if off them he will see me at my worst and be able to order proper test and get to the bottom of it all...that is the plan!! So Friay surgery then wait and see..he did not say it but seemed less than impressed with how my case has been handled. I might be moving my docs from Jeffferson to HUP. He likes challenges and considers me a big one.:rolleyes1:

[Al]

Very good, Susan. I am sure that, as far as challenges go, you are indeed a "big one". But let's go no further down that road....

Doctors will not generally bad-mouth their colleagues. Not to patients, at any rate, even when they thing the other guy is a truly sorry specimen. But the good thing is that he is interested in your case. If you were to decide, on your own, to take your business to HUP (i.e., without his encouragement to transfer your allegiances), it sounds like you have got your doctor.

Al

[newweg]

I am ready to follow him and anyone he recommends. He spoke to me for 1.5 hours and was totally focused on the details. He likes challenges and a big one he just met. So perfect match.:thumbsup:

[pberggren1]

So do we call you halfweg or newweg then?......lol.

So glad you got to see Peter.

[newweg]

Right now I am a NewHalfWeg...more info to follow and hope to have a whole name!:thumbsup::confused1::laugh:

[Al]

Goes to show you, Susan (NewHalfWeg?): A good doctor can make all the difference--and that ain't rocket science, but just a little rapport with the patients. I am glad you have made this contact.

As I say, good doctoring shouldn't be so hard. Earlier today, I attending a "portrait unveiling" of a beloved doctor who had been Director of the Lipids Research Clinic at the University of Washington. (I had known Bob not as a doctor but a family friend and an amateur musician. Also, his daughter--now a dermatologist--went to the same high school as my kids.) On a personal note: Bob fell ill while attending to patients. This was about the time I was in the hospital. Turns out he had an undiscovered distant cousin to WG, along with hairy cell leukemia. I made it out of the hospital; Bob, with the world's best surrounding him, did not.)

Bob was an unusual doctor, at attested to by the speakers at today's event. For one thing, he was famous for giving his mobile phone number to his patients (and taking the calls at home), and for making house calls--even on weekends. (There was much ooh-ing and aah-ing about this among the assembled guests, most of whom were his medical colleagues.) Unepectedly, perhaps, Bob considered himself a servant. And that is, I think, along with the obligatory intelligence and even some arrogance, critical for real healing.

Let us know, Susan, what Dr. Merkel comes up with for you!

Al

[mishb]

Good on you, Susan, for challenging the medical profession :thumbup:

Seriously though, I am so glad you finally got to see someone, who not only takes an interest, but actually cares.

[newweg]

Me too! Thank you.

[newweg]

Had surgery on sinuses and feeling good thanks to lots of meds! ENT spend 3 hours in surgery, I was in recovery 3 also. Not only did he take more than 5 biopsies (hope the prednisone does not hide anything in reults) but he corrected my deiviated septum that reduced the opening of my right nasal passage. Cleaned out a lot of atuff, not sure what that means but all sinus cavities had 'stuff'. Interesting finding! I had numerous right sided only anatomical deviations in my sinuses, all right side...right side is always worse which is what confuses docs! Who would have thought? No idea what it all means yet, but happy I had surgery...nite all, sleepy time.

[drz]

Sounds promising for better health in future. Hope it turns out real well for you. Glad it is over! Wish you a speedy recovery!


Had surgery on sinuses and feeling good thanks to lots of meds! ENT spend 3 hours in surgery, I was in recovery 3 also. Not only did he take more than 5 biopsies (hope the prednisone does not hide anything in reults) but he corrected my deiviated septum that reduced the opening of my right nasal passage. Cleaned out a lot of atuff, not sure what that means but all sinus cavities had 'stuff'. Interesting finding! I had numerous right sided only anatomical deviations in my sinuses, all right side...right side is always worse which is what confuses docs! Who would have thought? No idea what it all means yet, but happy I had surgery...nite all, sleepy time.

[Al]

Susan, I'm glad this step is behind you. The tale will be told in the biopsies. At least, you will be closer to a credible story. Please let us know when you find this out.

Al

[Dryhill]

Susan, I hope this means you can soon start having better health. Interesting about the right side of the sinuses always being worse, nobody told me this fact when they showed me the X-rays of my right sinus.

Jim

[newweg]

Jim,
Did you have symptons more on one side?
Susan

[Dryhill]

Jim,
Did you have symptons more on one side?
Susan

Yes on the right side. The left side did, and still does cause some problems but the damage is mostly on the right hand side.

Jim

[mishb]

Its the right side of my sinuses as well.....totally stuffed (pun intended)
The left side is fine

[newweg]

Both of you, did biopsy show wegs? I am concerned because been on steroids 1.5 years!! ANA negative.

[Palmyra]

Hi Susan..

A biopsy of the sinus is tricky as it is mostly of cartilage. Even Weg specialists do not go there for biopsy to confirm Weg with much frequency. There are so many different tissue presentations in the sinus (connective, cartilage, bone, soft) and inflammation is sooo very common there. I am so much more stupid than I think I am, but lymphomas typically present...I think, in lymphatic tissue? (such as those swollen cervical lymphatic nodes that happened to you previously).

Best of luck to you regarding further testing/differential diagnosis, and please keep us posted regarding your results!

Jane

[newweg]

I will, I go back to ENT Weds for 1st follow up and am very uptight.

[Al]

Susan, I understand your being nervous about what the ENT has to say. But I submit that there is a different way to consider things: That could be the start of some sort of answer to what your condition really is. There is, I think, some potential comfort in this, especially if you go in there charging!

Al

[mishb]

Susan, from what I have been told, they took a few biopsy samples from the affected right side and only one from the left side.
In all samples they only found one very small granuloma but I guess it was enough because treatment started after that time.
But do remember, even if nothing is found, it doesn't mean you absolutely don't have WG.
Or it could be MPA, is this also an option on the table?
I do hope that it isn't lymphoma though
......... I feel just a little crazy now wishing it is one thing over another, that is just as bad as the other but also treatable by the same medication.

Therefore I wish for a great outcome for you and good health

[newweg]

what is mpa?

[Al]

what is mpa?Microscopic PolyAngiitis--an evil twin to WG. It is also an "ANCA Associated Vasculitis", but with subtle differences. Most often (but not exclusively), it is associated with P-ANCA (WG with C-ANCA); upper airway involvement is usually limited or non-existent, and granulomas are rare. But it almost always has both lung and kidney involvement.

For what it is worth, MPA does not sound like your condition, Susan.

Al

[newweg]

think I a beyond upset at this point.

[mishb]

think I a beyond upset at this point.

I'm sorry, I/we didn't mean to upset you. I'm sure things will be fine. :hug3:

At least you have all of the options out on the table now and they can't hit you for a six

[newweg]

I think I slept 6-8 hours since I woke up from surgery on Friday. I heard possible sinus malignancy. If no reports or information from ENT today, I will surely lose my mind. Besides my semi diagnosed condition a concern...Nothing like being a 'bit' dependent from after surgery, no lifting, no bending head for a week to see what friends and family are about. I am making my circle smaller and smaller. My oldest who is married with 3 kids took me to hospital and home and made it quite apparent I was a real inconvenience in her life. She dumped me off Friday night and I never heard from her all weekend, either did my 15 or 16 year old, who are quite frightened by the unknowns. Monday mornng I received a text from oldest stating she hoped I had a restful weekend. I did not repsond. She called about 6 hours later and said I sound exhausted, told her I am I have not slept. She rambled for 10 minutes about blood work and tests and I was quite confused. She just left a rhumy herself with a list of blood work to be taken including wegeners. Now remember, not one question about me, just I sound exhausted. I ask are you ok? She will find out, because of me she feels she needs to be tested for everything........WTF??????? Excuse me but I will stop there. Thank God for the few girlfriends I have. One is picking me up soon for my ENT appointment.

[newweg]

Was at ENT..cleaned out a lot, septum fixed..biopsies negative but said continue treatment prednisone could give false negative...back to square one..but glad got sinuses fixed and septum.

[Sangye]

Yikes, newweg I just read this entire thread to catch up. The worst thing is not knowing. I hope you get answers soon.

[Al]

I think I slept 6-8 hours since I woke up from surgery on Friday. I heard possible sinus malignancy. If no reports or information from ENT today, I will surely lose my mind. Besides my semi diagnosed condition a concern...Nothing like being a 'bit' dependent from after surgery, no lifting, no bending head for a week to see what friends and family are about. I am making my circle smaller and smaller. My oldest who is married with 3 kids took me to hospital and home and made it quite apparent I was a real inconvenience in her life. She dumped me off Friday night and I never heard from her all weekend, either did my 15 or 16 year old, who are quite frightened by the unknowns. Monday mornng I received a text from oldest stating she hoped I had a restful weekend. I did not repsond. She called about 6 hours later and said I sound exhausted, told her I am I have not slept. She rambled for 10 minutes about blood work and tests and I was quite confused. She just left a rhumy herself with a list of blood work to be taken including wegeners. Now remember, not one question about me, just I sound exhausted. I ask are you ok? She will find out, because of me she feels she needs to be tested for everything........WTF??????? Excuse me but I will stop there. Thank God for the few girlfriends I have. One is picking me up soon for my ENT appointment.Clearly, Susan, you need to get some quality (and quantity) sleep, just so that you can get a clear picture of your situation. (When I say "clear", it is with rolled eyes, because there is not much about your situation that is really clear--not yet, anyway. But you can perhaps get a less fuzzy view of the confusion, and at least be able to cope with everyone else's confusion. The smaller and smaller circle does not help so much.) You know, it may be that you have invented a new syndrome. (Isn't that, er, terrific...?) The docs seem as unsure about things as anyone. (Square one, my sorry keister!) Rest now; let us take over hanging on tenterhooks for a while, waiting to hear the next exciting development.

Al