Cancer worry

[gwenllian111]

I know this is stupid, but is there a relation between WG and higher cancer rates?

I'm worried about my unexplained neutropenia, and I lie awake at night wondering if I have (or going to develop) a form of bone marrow cancer.

Sorry for sounding so melodramatic. :sad:

[elephant]

Gwen, I was told when I got my kidney transplant that the medicines that we are on ( immunosuppressants) can cause cancer. I have know some patients who developed cancer from being on the medicines that we are on. It doesn't mean that it's going to happen to you or everyone who is on these meds....I have been on/off immunsuppressants for 30 years and no cancer. I too think about it, but then I forget it for a while. I think that many Rheumatiologist know this and want to get us off these meds in a timely manner. Some people like me will never get off these meds because of my kidney transplant...but I am happy to be alive.

[Jack]

I suppose the short answer is yes. :(

Bladder cancer and skin cancers are the ones I am most aware of, but there are others too. As mentioned above, it is a price I was willing to pay when faced with the certainties of untreated Wegener's, but I try to keep it as something that I will worry about if the time ever comes.

[DEE]

i understand what Jack is saying the drug ive just come off could have caused bladder and the one im going on could cause skin cancer but like he says i think of today, deal with tomorrow when it comes .
one day one week is fine by me
please take care of you dont worry about the what if's DEEx

[Sangye]

The risk is real. The best you can do is lower your risk of cancer in other known ways-- eat lots of veggies and fruit, take antioxidants, limit your exposure to radiation, electromagnetic fields, etc....

Gwen, have you seen a hematologist? They'd be the ones to know what's going on with your neutropenia.

[Brooke]

I worry about that too so you are not the only one! Just try to stay positive and think good thoughts! :thumbsup:Too much stress and worrying can make you sick too so that is why we all need to be strong! That is why I love this site because everybody offers great advice and will lift you up when feeling blue

[marta]

I actually went through the enclosed leaflet from the cyclophosphamide (another sleepless night) and the most reliable way to avoid bladder cancer is to drink lots of water, as we've all been told numerous times by our docs. The reason for this is that once metabolized it's split into two different elements, one of them being a carcinogen. The drinking of water is to prevent the carcinogen from staying in contact with your bladder walls long enough to cause problems, of the cancerous type.

Gwenn, I too have had some unexplained things with my bloodwork, and my rheumy said to me, this is a direct quote, "just because you have Wegener's doesn't mean you can't catch something else" - eeeek. They are worried about abnormal bone marrow function, or liver function, or spleen function, or just a vitamin B12 deficiency.... they're investigating further, but I'm ignoring it and letting the specialists figure it out. I continue to do everything I can right, and that's all I can do, that and chugging along.

[pberggren1]

Yes, it is worrisome to think that for most Weggies it will be infections that cause us the most trouble in the long run. I am living proof of that. Many sinus infections and a few lung infections to boot.

I trust in my specialist too but I always continue to question him on everything and if he doesn't call me back within 24 hours I go to the hospital and track him down and talk to him there. He is always pleased to see me and have a chat.

[elephant]

Phil, you crack me up....sounds like you have a wonderful Rheumatologist!

[pberggren1]

Phil, you crack me up....sounds like you have a wonderful Rheumatologist!

Actually he is not a Rheumatologist. He is in Internal Medicine and Nephrology.

[elephant]

Phil you are so lucky to have a caring doctor. I bet it takes a load of your mind knowing that you are in good hands.

[drz]

I suppose the short answer is yes. :(

Bladder cancer and skin cancers are the ones I am most aware of, but there are others too. As mentioned above, it is a price I was willing to pay when faced with the certainties of untreated Wegener's, but I try to keep it as something that I will worry about if the time ever comes.

I read somewhere than lymphoma is another one of increased risk from Cytoxan treatment.

[Sangye]

That's true, drz. Cellcept, too. I'm pretty sure all the immunosuppressants increase the risk of lymphoma.

In my case, my risk of cancer is sky-high. The factors for me are the huge amount of radiation I've had from x-rays (over 50) and CT scans (about 30), having had ctx and cellcept, and prior history of high exposure to carcinogens and radioactive materials. I don't dwell on it, though. I have it in the back of my mind and keep an eye out for warning signs, but I don't lose any sleep over it. I have enough to deal with-- things that are actually happening-- and don't want to waste energy on things that may never happen. I do eat lots of protective foods and use supplements for that as well. I'd do that even if my risk weren't this high.

If the Cancer dog gets in my house, it won't surprise me. But I'm not gonna stand at the window looking for it. :wink1:

[Brooke]

Good attitude Sangye :wink1:and I hope the cancer dog stays away from all of us! We all have enough going on right?!

[elephant]

Well put Sangye, I have two young chidren to take care of and I want my energy spent on them.

[gwenllian111]

Sorry for the delay in replying. I'm back in hospital. My neutraphils dropped to 0.20 today, and my white blood count is just 1! I am waiting to be seen by a Haematologist and Immunologist tomorrow.

I asked if i could have cancer, and the answer is 'i don't know.'

My Rheumy (who had a cold, and so couldn't actually come near me!) has ordered a load of scans, mri, ct, of just about every bit of me. My spleen is enlarged too.

I wish i could be home with my family, but the truth is, i'm not coping at home i feel so ill and tired all the time.

My ESR is 2 and CRP 3, so very good news there.

Waiting for a bone marrow biopsy I suppose, and see what happens.

Thanks for all the brill replies xxxxx

[elephant]

.Gwen I will be praying and thinking of you. :hug3:Sorry you aren't feeling good. Keep us posted

[Sangye]

Gwen, I'm sorry to hear this. Stay strong--they'll figure out what's causing all this. Big hugs to you, friend. :hug2:

[marta]

Gwen, as if Wegs isn't enough to deal with mentally and physically. Take care and know that there is lots of positive energy heading your way right now.

Lots of love. :hug1:

[Doug]

marta ~ I try to find photos that do the same for me for my avatar. The current one suggests my upside down world, in a humorous way, yet it could read as an invitation to kiss my cat's @$$, not a very friendly thing.

Gwen, I join everyone hanging in there for you. It is difficult to be upbeatr, positive, happy when one's body seems bent on hurtuing you, yet focus on how you've come through it in past.

[Sangye]

Gwen, any updates? Got you on my mind, girl. :hug2:

[gwenllian111]

Sorry for the delay in replying guys.

Still in hospital, and no improvement in my bloods.

I'm going to have a Bone Marrow Biopsy on Monday, and then my RHeum is going talk things over with the Haem Consultant. It's quite annoying that I haven't started any GCSF injections or anything to boost my bone marrow, but the doctors are hoping my bloods will improve on their own.

I'm on 30mg pred. I had bloods sent to London to be analyzed to see if any antibodies were attacking my white cells, but it's come back negative.

My blood pressure keeps crashing, and my pulse rate goes high and my temp raises a bit. I'm on IV broad spec anti biotics, so I shouldn't get an infection while i'm in hospital anyway.

It's my daughters birthday on Tuesday, and it's unlikely i'll be home by then. I cant stand to think about it, i miss my children so much. :(

I wish I knew why I felt so ill. I've never heard of a blood cancer to just affect the white cells/neutraphils without it affecting hb, platelets etc too, so I don't know what's going on. x

[Sangye]

Thank you for letting us know what's going on. The meds that boost bone marrow production can be risky. The FDA has warnings on them that say they should only be used for anemia caused by chemo and should be stopped when chemo is stopped. Glad they're waiting for your consultation with Hem/Onc, but I sure wish they could see you sooner. (Same thing happens here on weekends)

I'm wondering what's going on with your autonomic nervous system, to be causing fluctuations in bp, pulse and temp. Also, have they checked your thyroid function recently? Wondering if you could be harboring a thyroid infection-- would also account for pulse and temp fluctuations.

I'm sad to hear you'll probably miss your daughter's birthday. Do you have lots of pictures of them with you? It always helps me when I'm inpatient to look at pics of my dogs. Warms my heart.

[gwenllian111]

I hadn't realised that there were warnings on GCSF injections. I have had them about 4 years ago, but since them, they've pretty much let my bloods sort themselves out. Except this not, i'm in a neutropenic pit that my body isn't sorting out.

I've never been so tired, or slept so much. I feel totally wiped out. For months now, i've been feeling ill, and it's just not getting any better.

Glad it's not just the UK has no medical care on the weekends LOL, it just doesn't make any sense!!

I don't have any pictures of my children here, nor do they come and visit me. Funnily enough, im on the 'infectious diseases ward' lol. What can I say?!!

I miss my children so much, it takes my breath away. I can't talk to my parents about them when they come and visit, because it makes me cry and want to go home so much. Got to keep it together. :(

[Sangye]

Gwen, ask your hubby or parents to bring you pics of them. You won't believe how much better it makes you feel to see them. It'll relax your mind.

Meanwhile, I'm gonna post some funny stuff for you to giggle about. Laughter is very good medicine. Take a big dose, okay?

[Sangye]

http://icanhascheezburger.files.wordpress.com/2010/09/2a7243c9-3cc4-407e-8b1e-c2a41600b3f6.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(http://icanhascheezburger.com/)

[Sangye]

http://ihasahotdog.files.wordpress.com/2010/09/53c4179f-6495-4820-b8bb-83aa2edbf7ef.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(http://ihasahotdog.com/)

[Sangye]

http://ihasahotdog.files.wordpress.com/2010/09/721eb089-85f9-41be-b48e-d7e7c75532d8.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(http://ihasahotdog.com/)

[gwenllian111]

LOL!!!!! xxx

[elephant]

Sangye they were all so funny, Gwen hope your not rolling on the floor laughing.:flapper:

[Sangye]

Gwen hope your not rolling on the floor laughing.:flapper:
Yeah, 'cause it's yucky down there. Put a sheet down first if you're gonna do it. LOL

[Sangye]

More for you today!

http://actinglikeanimals.files.wordpress.com/2010/09/crowstealfood.gif (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

[Sangye]

http://actinglikeanimals.files.wordpress.com/2010/07/5dc8cca7-7df8-417f-8ff6-cbc7c36a3c1f.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

Hang in there!

[elephant]

Those are great Sangye!

[gwenllian111]

Yes they are. :)

I was trying to convince my husband, Craig, to have a kitten for my daughters 4th birthday on tuesday. He says no though. I was hoping seeing as I am in hospital he might soften, but no luck so far lol!

Bone marrow biopsy tomorrow. Answers at last.

Night guys xxx

[JanW]

Good luck!

[elephant]

Gwen, I had a bone narrow biopsy when I was 15, that's when I spent two months in a childrens hospital....they were trying to figure out what was wrong with me. It isn't that bad. You will do fine. :hug2::hug1:

[Sangye]

I hope it goes well, Gwen. Take good care--

[marta]

Take care Gwen. I too hope it all goes without pain, and with good answers....exactly the kind you want to hear. Oh and really use the moment for the 'kitty plea' - put on the post surgery voice and who knows. :thumbup:
Nothing but the best tomorrow!!!!!

[Sangye]

LOL-- the post-surgery voice! "Oh, I'm so vewwy weak. Bring me a kitteh. No, no water for meh. Only a kitteh can help meh....(cough, cough, cough)" :laugh:

[Doug]

Seriously! Sangye's advice is gold.

[misskay]

lmao sangye... that's how I ended up with my three furry children.

[Sangye]

http://ihasahotdog.files.wordpress.com/2010/09/129188605212981850.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(http://ihasahotdog.com/)

[gwenllian111]

Just to update you guys, I came home from hospital yesterday. Terrible treatment, the Rheum doctors didn't even bother doing a ward round, so in the end, I discharged myself.

Haematology weren't bothered and said I was ok to go home, but I can honestly say I don't remember ever feeling quite so ill.

[Brooke]

Hi Gwenllian - I am sorry you were not treated properly, what is a ward round?
Is there someplace else you can go? Hope you get better soon.

[Jack]

You can't let them treat you like that! What was the explanation for not seeing you?

[elephant]

Gwen, need to go back in there with Phil..he'll take care of them.:flapper:

[Sangye]

Did they do the bone marrow biopsy, Gwen? I'm so sorry this happened. Can you talk to your regular rheumy? Please insist on them helping you. Something isn't right.

[marta]

I'm sorry you're feeling so bad and that the visit ended up in a not great place. I hope you regain some strength at home and go out and keep pushing for things to get done. I just finished telling my mom how you have to be your own best advocate when it comes to health care. So go out there and be as squeaky a wheel as possible... everyone wants to fix the squeaky wheel. Get squeaky, get strong, get healthy! Most important, get healthy!!

[drz]

You can't let them treat you like that! What was the explanation for not seeing you?

That is why you generally need a personal advocate when you are in the hospital. it seems necessary to be sure you get right treatment and to ensure you understand what treatment you are getting. I had a family member who did a great job being my advocate cause I was in no shape to understand everything when i started my in patient care months ago. She kept doctors on their toes and made sure they knew all the pertinent info before consenting to any treatment. She also stayed in contact with them and made sure things were done in timely and correct manner.

[gwenllian111]

Hi!

A ward round, is where the doctors come and review you once in the morning, and make a plan for the day (ie. scans, tests etc if any at all). But on Monday, the Rheum doctors were all busy doing clinics at another hospital.

So, I discharged myself. I may as well be at home in my own bed, if nothing is happening in hospital.

BUT, i felt so ill, that yesterday, I was readmitted. This time, i've had a bone marrow biopsy (waiting for results this morning), scan, and waiting for a general surgeon to review to help explain adbo pain.

My dad has been a trooper demanding answers from doctors, and to be fair to him, it has worked this time. x

[Jack]

It is seldom a good idea to discharge yourself, believe me the hospital wants to free up your bed as quickly as possible (in the UK at least) and they won't keep you unless they think it is in your best interest. I do know the frustration with the seemingly inevitable delays and I have considered this course of action myself. The trouble is that it usually results in even more delays while you are readmitted and the whole process starts again. There is also the danger involved in being at home when you are in poor shape and things can go wrong very quickly. Even if nothing much seems to be happening, hospital is probably the best place to be.

[elephant]

Gwen, glad your dad is being your health advocate. Let us know how you are doing.

[Doug]

That is why you generally need a personal advocate when you are in the hospital. it seems necessary to be sure you get right treatment and to ensure you understand what treatment you are getting. I had a family member who did a great job being my advocate cause I was in no shape to understand everything when i started my in patient care months ago. She kept doctors on their toes and made sure they knew all the pertinent info before consenting to any treatment. She also stayed in contact with them and made sure things were done in timely and correct manner.

drz is dead on. I wrote a similar response, coincidentally, somewhere else on the forum just moments ago. Having an advocate who follows up on you care is vital when you are too sick to handle this yourself. It's a big enough thing to get you mind around the fact that you have a potentially killing disease, let alone that it is a life-long one, let alone learn "doctor-ese" in an instant! Someone else recommended recording doctor comments (with permission, of course!) during encounters, for future reference when one better understood the issues and jargon. Another person recommended getting everything down in a notebook at the time, for future reference. I wish I could give names: Those both are excellent recommendations, too!

[drz]

drz is dead on. I wrote a similar response, coincidentally, somewhere else on the forum just moments ago. Having an advocate who follows up on you care is vital when you are too sick to handle this yourself. It's a big enough thing to get you mind around the fact that you have a potentially killing disease, let alone that it is a life-long one, let alone learn "doctor-ese" in an instant! Someone else recommended recording doctor comments (with permission, of course!) during encounters, for future reference when one better understood the issues and jargon. Another person recommended getting everything down in a notebook at the time, for future reference. I wish I could give names: Those both are excellent recommendations, too!

Recording all pertinent treatment info in a note book is a great idea. My daughter kept several such note books over my inpatient treatment and it was amazing to me how often she had to inform doctors about pertinent info on my treatment that they hadn't looked up or considered when making their recommendations. Many times I have had to have doctors talk with her to get pertinent info about past treatment history. It seems few doctors today take time to actually read your charts or remember the important info. Sometimes it doesn't even get recorded. That is why you need to have this info available when needed when discussing your treatment options. It helps to keep copies of your actual lab results too.

[marta]

Recording all pertinent treatment info in a note book is a great idea. My daughter kept several such note books over my inpatient treatment and it was amazing to me how often she had to inform doctors about pertinent info on my treatment that they hadn't looked up or considered when making their recommendations. Many times I have had to have doctors talk with her to get pertinent info about past treatment history. It seems few doctors today take time to actually read your charts or remember the important info. Sometimes it doesn't even get recorded. That is why you need to have this info available when needed when discussing your treatment options. It helps to keep copies of your actual lab results too.

I just got permission to get my lab results about a month and a half ago and it's paid off twice already. Once my rheumy didn't get the last results before my visit and luckily I had them with me, and it happened a second time on a visit with my GP and again I had all of my previous results on hand and she could talk about what was going on. What a total geek I am, but I felt totally 'on it' when they didn't have the results and I did (even though I still don't know how to read all of them, but I'm learning - sloooowly)

[marta]

How did the bone marrow biopsy go Gwenllian? Hope it was smooth and you get the right answers tomorrow. Take care and rest lots.

[gwenllian111]

You are all absolutely right about having a health care advocate. My dad has been my saviour. He organised an urgent meeting with my Rheumy, Haematologist and Immunologist. Things got done very quickly from there on, my father was not pleased with how lapse treatment had become.

Anyway, had the bone marrow biopsy a few days ago. It is the WG antibodies killing off the white cells in the bone marrow, hence the low blood count. I'm home now, on G CSF injections to stimulate the bone marrow. Fingers crossed it works. In the meantime, any sign of a temp and i'm back in hospital.

Feel so ill and tired all the time, it's hard to pick yourself up for the kids when you feel so unwell. x

[Jack]

It never occurred to me that Wegener's could attack bone marrow. Inventive isn't it?

[gwenllian111]

It never occurred to me that Wegener's could attack bone marrow. Inventive isn't it?


Nothing suprises me with WG anymore.

[Sangye]

Oh man... Gwen, what is the treatment plan? More ritux? I've never heard of bone marrow involvement, either. That Wegs dog learns new tricks every day. :sad:

[DEE]

Glad their getting things sorted , take care of you DEEx :hug1::hug2::hug3:

[elephant]

:hug3:I too have never heard of WG doing that. Like Dee stated ..above statement!

[gwenllian111]

Oh man... Gwen, what is the treatment plan? More ritux? I've never heard of bone marrow involvement, either. That Wegs dog learns new tricks every day. :sad:

No treatment plan really. Back on pred, and when i get an infection I just go back into hospital for IV broad spectrum anti biotics.

x

[jola57]

Just think it attacks anything to do with blood vessels so, bone marrow, central nervous system, you name it it attacks it

[Brooke]

Sorry to hear Gwen, I have not heard of Wegs doing that either!

[Doug]

WG is systemic. Well, perhaps the fact we haven't heard of WG vs. bone marrow so far is that to this point the Prednisone+Cytoxan mix so wiped out the bone marrow in the process of taming the WG, that the connection wasn't made. I was on Procrit injections for several months trying to jump kick my white blood cells and red blood cells once Prednisone+Cytoxan did their deed.

Didn't you have the slower, less aggressive treatment, Gwen? [OFF TOPIC: What a beautiful dog in your avatar, Gwen! Reminds me of a spaniel my grandmother had when I was a baby through about 12. Very protective of me when I was a baby, and a good buddy while I grew up!]

[gwenllian111]

That's Ben, my border collie. He was a faithful old boy, truly wonderful. But unfortunately, his nerves got the better of him and he bit my neighbour out of fear (she jumped over into our garden, and he was protecting his puppies). We made the terrible decision to have him put to sleep. I hope that when i pass into the next world, that i'll be with him again and that he forgives my husband and I for making that awful decision over him.

Neutropenia is back again. I can just tell when my bloods drop, because my bones ache and I just feel ill. Luckily, I can inject myself at home with GCSF when I need to, which hopefully will mean less hospital admissions. I have to be careful though, because the injections work too well and my WBC goes up to over 30 or 40 which is way too high!!

I had cyclo a few years ago, but I reacted badly too it but apparently the bone marrow biop showed an auto immune reaction - where the antibodies kill off the neutrophils when they are 'babies' so unfortunately they are never released into the blood stream. WG also depleats the red cells, haemaglobin and platelets to some extent too.

[elephant]

Gwen, don't beat yourself up about your dog, the thought of your dog possibly biting someone else probably overwhelmed you. I hope you have forgiven yourself and I know in your heart this hurts. Sorry that your Neutropenic again. Take care of yourself. Thanks for the update.

[Doug]

Aw, that's awful about Ben, Gwen. I know how heart-breaking the loss of a pet can be, and to have it happen that way is tragic plus the sadness you feel. Laws vary from jurisdiction to jurisdiction, but I imagine you did what was expected to be done when a pet bites a human. Still tragic. And sad.

[mishb]

I had to re visit this post.
I saw my rheumy today and an immunologist she brought in to speak to me.
They are worried about my spleen and also bone marrow.

My recent blood test was last Wednesday and it shows little or no improvement in my ESR and CRP levels. My Liver and Kidneys are fine, WBC's are up and my lymphocytes are up.

My WBC's have always been up but the lymphocytes from my very first positive WG blood test in Sept 2010 were normal and then they went higher. They increased my MTX 6 weeks ago and the bloods from last week have shown the lymphocytes even higher than the one 6 weeks prior. They said that they don't want to increase the MTX again in case this is the reason for it going higher.....ever heard of this happening?

Now they have booked me in for some weird and wonderful blood tests (ANA, ANCA, flow cytometry, Lymphocyte T & B Cells panel, EPP, LDH, P2MG and Fes studies) and a bone marrow biopsy and a bone density scan....Goodness haven't heard of many of these.

My clinical notes show as Positive ANA, cANCA vasculitis (Wegeners).

Why is it that I feel so well......probably 98% on what I did this time last year or 2009. No joint pain (thankyou Pred) and I can now breathe through my nose for about 3 hours a day. I know it is the medication and I, for one, am happy to be on them.

However, should I be starting to worry, I have only read on here about the WBC being low or the lympocytes being low....and mine are higher than normal and rising?

Thanks for hearing me out

[Sangye]

Michelle, it's impossible to tell what's going on without further testing. I'm glad they aren't ignoring it.

I'm sorry you have to have a bone marrow biopsy--that's a bit painful for a day or so. I know several kids with cancer who have to have them done every 3 months for years, even when they're in remission because their cancer is a type that easily returns. They take acetominophen and are usually running around by the next day.

[mishb]

Thankyou.

My grandmother had lymphoid leukemia and I was her primary carer, so I know most of it .... but still I'm hoping that my blood just lies (as mentioned in another post)
.......My blood is a liar :unsure:

[Sangye]

I hope so, too. It happens all the time.

[Jules]

So can anyone tell me, when the docs say you must cover up in the sun due to the drugs causing a high cancer risk . . . do they mean cover up clothes wise, or would using a very high factor sun screen be ok? Summer hols are looming and two weeks in Portugal will be very compromised if its the former! Although with all this pred weight I'm sure other holiday makers would thank me to cover up completely! :laugh: Should have asked at time, but was one of those recent consultations where the docs mouth was working at 100mph but the patients ears were on mute!!!!

[mishb]

Saw haemtology and oncology today. Last weeks blood results show my WBC and lympochytes are up even higher than they were from last fortnights bloods and we didn't even increase the MTX.
The specialist said that the results show I have leukemia but he finds it strange that I don't have any symptoms.
Any sudden weight loss - "yeah...very funny", Loss of Appetite - "are you serious", Night sweats - "No", Fevers - "No", enlarged glands - "umm No..I don't go around feeling them".
He said it didn't make any sense - oh well thats me for you.
More bloods drawn with the same panel as before (minus the ANA and ANCA) but including Hep B, Hep C, and HIV .....what the
Still have to stick with... my blood lies.... and I reckon it is just the inflammation from WG.

On another note, they said I would probably be on some sort of maintenance dose of MTX for the rest of my life and that it is the same medication they use for blood cancers anyway.
Yay for me

[Sangye]

Michelle, if that were me I'd get another opinion asap. Are you near a major teaching hospital?

I also question the "mtx for life" decision. What's that based on? It's an outdated approach.

[JanW]

What Sangye said.

Mtx for life is definitely and outdated approach. Me and vdub on this very forum are in remission and reducing now, having not been on it for years and years or anything (in my case less than 18 months).

[elephant]

I agree with the above! Get a third opionin!

[Sangye]

Michelle, it also occurred to me that the mtx dose used to treat cancer is much higher than a maintenance dose for Wegs. Full-blown chemo is a totally different thing.

[vdub]

What would be considered a maintenance dose? I can't remember what it was like to be on 15mg/wk (6 tabs), but I don't think it was too bad. I think my original rheumy would have left me at that level for a long time, but he wasn't a specialist.

Interesting that you bring up the bone marrow test today. I spent an hour at an appointment with my Dad this morning. He's 89 now and has to have a bone marrow in about a week. The doc said that he would have a local anastesia, the needle would be put in an go through the bone to the bone marrow, then a small amount of marrow extracted. The only part that is supposed to have any pain is when the bone marrow is extracted. He said 3 or 4 seconds of moderate pain. Then he pulls the needle out just beyond the bone, gets another poke at the bone to get a "plug", then done deal. He didn't mention any pain after the procedure, but I would think there would have to be some discomfort.

I had to have a spinal tap about 4 months ago. Try having a 4" needle poke through your back, through your vertebrate, and into your spinal cord. I had to stay in a tight fetal position for about 20 minutes. It was almost as bad as listening to Spinal Tap music for 20 minutes, but not quite.

I sure hope I'm in remission Jan.... Today was not so good and this should have been a good day given my previous track record. I sure am getting tired of pain.... Now where did I put that codeine? :-)

[mishb]

Thanks everyone.

I have been given a name of a number one Oncology Professor and he works at the hospital I go too, but would like to hold off on bringing his name up for the time being.
I go to one of the largest, busiest hospitals in Australia and people get recommended there from all parts of the world. They are actually Melbourne's biggest trauma centre and also heart and transplant hiospital and a teaching hospital. They have a large vascullitis clinic on Mondays and Fridays, so I think I'm in the right spot.....nothing like your Mayo or Cleveland though, I'm sure.

The specialist did say that if I had any of the symptoms of Leukemia then I would remain on the same meds but that the dosage would be so much higher than what I currently take and thats when he said that once they get me into remission (from the blood cancer as he liked to call it) then I would be on maintance MTX probably for the rest of my life.
He wasn't talking about the Wegs.

I see my rheumy on Monday and will find out what she has to say about it all. Hopefully the next lot of blood results are in by then.
Then on Wednesday - a bone density scan, and then the week after - ENT ...... oh the joys

I feel fine, so basically, I feel I am on the correct treatment and that is the treatment for WG...... and I will worry about other stuff, if and when it happens.

So until then ....

[mishb]

Wow, I saw Rheumatology this morning and they have hit me for a six (so to speak - cricket terminology).

Apparantly I have them stumped. They have all the info from Oncology and as far as they are now concerned ......wait for it...........
.... I don't have Wegeners. :predrage:
I have all of the symptoms of Wegeners but I am too healthy to have it............. what the
They wouldn't have said that this time last year (or the year before), I could hardly walk with the RA, my hands felt like they had been smashed in a car door (repeatedly),
my nose/sinuses totally blocked or bleeding, deaf in right ear, scleritis in both eyes....seems like WG symptoms to me..... then I started on medication and eveything basically went away, overnight.

They now feel I have an Autoimmune disease called Mixed Connective Tissue Disease ... with Positive C ANCA, ANA and with only one small granuloma found during a nasal biopsy.
My main bloods show T Cell CD4+ ...whatever all of this means.:unsure:

I think I have them all fighting over me now .... stupid body.....ENT still say Wegeners, Immunology and Rheumatology say Mixed Connective blah blah and Oncology/Haematology say a blood cancer.

Rheumy wants to increase the MTX by another 5mg to 20 but to start tapering the pred and hold at 5mg currently at 7.5.
They then decided not to increase the MTX until I have another lot of bloods in 4 weeks.

.... I can honestly say I'm a bit afraid to go off any medication for fear it will all come back with a vengeance again.

I'm not sure I'm on a roller coaster anymore - maybe a round-a-bout is a better term for this last lot of information.

Oh well, it could have been way worse news

[pberggren1]

All I can say is WOW!

This seems so confusing and almost unbelievable. I have never heard of this other disease before.

[vdub]

That would be so frustrating.... I understand your reluctance to go off any drugs.....

[Sangye]

Michelle, have you gotten an opinion from a Wegs specialist? In 2009 I was having a flare but no one had figured it out yet. I began coughing up blood and was admitted to the pulmonary unit at JHU. For some bizarre technical reason, the JHU Wegs docs can't treat their own patients when they're admitted, so various pulmys and regular rheumys treated me during the week I was there, while they relayed info to Dr Seo and supposedly took his advice. None of them could agree on whether it was a Wegs flare or not. Even though I was extremely weak and coughing up blood, my labs were normal and I "looked too good for it to be Wegs." I was discharged with a dx of viral bronchitis. When Dr Seo found out I got a call early the next morning asking me to come see him. It was Wegs and my lungs were bleeding. He had known it but the doctors weren't relaying info back and forth properly. These were excellent doctors but they just didn't know Wegs.

Take home message: Don't let anyone but a Wegs specialist tell you it's not Wegs.

[Brooke]

Wow, how very frustrating this must be for you! I hope the best for you and hope the doctors can get this figured out! Talk about stress!

[vdub]

Take home message: Don't let anyone but a Wegs specialist tell you it's not Wegs.
Heard it twice on two seperate visits to rheumy1.... "I'm not sure you have Wegener's." I was really glad to the get the spcialist's dx even thou it was several months later.

[mishb]

As mentioned I go to a very large hospital in the Melbourne CBD. The rheumy mentioned once that I am one of 100's that they treat each year and that I am in good hands and they will take care of me.
I do trust all of the different specialists I see there and they have been fantastic. I guess our large hospitals though are not really the class of your Mayo or CC.
They have never said (Since Sept last year) that I don't have Wegener's, it is only now after my very weird blood tests that they are saying, oh, you might actually have something else.

After reading up about the Mixed Connective Tissue Disease, it is still vasculitis related and everything seems to be nearly the same as WG but is a three in one
.........so I guess they could also be correct. Maybe others out there also have some of this wonderful three in one.
I read that it was also called MCTD or Sharp's Syndrome. My husband said that MCTD sounds like myxomatosis (when you say all of the letter fast)
and that puts more theory into the Rabbits being the culprit.....as per a much loved other thread. Yes, I too had rabbits for many many years.

I see ENT in two weeks and they still think it is WG so I will just keep on keeping on until then, and hopefully all the pieces of this wonderful puzzle will one day come together.

[vdub]

oh, you might actually have something else
I think there is a very thin line between a lot of the different auto-immune/vasculitis diseases. Sarcoidosis comes to mind as one of those very close to Wegener's. I guess the differenece between the two would be that Wegener's develops the granuloma whereas, sarcoidosis develops some other clump, but I'm way beyond my actual knowledge here.

This is the def from Wiki -- "MCTD combines features of scleroderma, myositis, systemic lupus erythematosus, and rheumatoid arthritis (with some sources adding polymyositis, dermatomyositis, and inclusion body myositis) and is thus considered an overlap syndrome."

My mother-in-law had an auto-immune disease known as CREST -- 5 diseases (Calcinosis, Raynaud's, Esophageal dysfunction, Sclerodactyly, and Telangiectasia).

Would the treatment for MCTD be about the same as for Wegener's? I hope they can nail down what you have. It's always a relief to just know what you have.

[mishb]

Thanks vdub,

I read those also. The mayo website has some good info.
The treatment as they told me on my rheumy visit and also on reading the website both say pred and mtx, ctx etc.
I was also surprised that positive ANCA and ANA were also involved.

I only had one small granuloma found in a nasal biopsy and I also read on one of the sites that small granulomas can be present.
This combined with my RA and also blue fingers and toes during cold days all points to either one of these.

I don't envy the doctors at all trying to figure this out....I guess I have a little of everything

Oh, lucky me :confused1:

[Sangye]

AI diseases often sprout other AI diseases. My hypothesis is that you have Wegs that's in remission and also may have MCTD. I don't see how your prior sinus, ear and eye problems could be discounted, especially when they responded so well to treatment. People with Wegs in remission can look and feel perfectly healthy.

[mishb]

Thanks Sangye,

Yes, I think you are absolutely correct and is more than likely the reasonings that my ENT is going for.

I felt (and I told them) that I was in some sort of remission (not those exact words), because the symptoms disappeared, not totally but at least 95%..... but, I would hate to think where I would be at without medication.

Oh well, I've always been the odd one out in my large family .....don't drink, don't smoke, don't swear, don't eat bad food (basically was the goody two shoes)......and I'm the one that gets to have a lovely little line up of conditions......... I still feel fine, so I will take it one day at a time, One step at a time etc etc.

And as always, I will ....

[Sangye]

LOL You have a good attitude, Michelle. I'm sure they'll figure out what to do at some point. Meanwhile, it's great that you're feeling so well!

[mishb]

Hopefully this is the last time I have to post on this particular thread.

Had my Oncology appointment today and received some fantastic news.

Latest blood results show, I do not (yes, I will say it again....do not) have Lymphocytic Leukemia or any other blood cancer that they can see.

They think that the reason for this is that the MTX that I am taking has actually put the cancer in to remission before it fully got a hold OR that I never had it in the first place and it was the inflammation in my sinus, knees, hands, wrists etc that were giving a false reading to them.

Saw ENT last week and the bad news is that YES I definately do have WG and I definately do have RA and I almost positively also have MCTD.

Wow go me.......5 AI's all in the one little package .....ME

I was told to keep on doing what ever it is I'm doing to stay feeling 98% good and I don't have to see ENT, Rheumy or Oncology for another 3 months unless my blood tests every 3 weeks show anything sinister. ENT told me that I'm the most wellest (is that a real word) looking sick person he has on his books ...and I plan to stay that way.

So..... as always

Keep Smiling
Michelle

[vdub]

Terrific news! Always nice hear of some good reports. Kind of crappy on the other auto-immune stuff, tho. Someone this forum once said "just because you have Weg's doesn't mean you can't get another bad disease". There's a sad truth to that, but fortunately your cancer has gone into hiding..... :-)

[Sangye]

That's great to hear, Michelle!

[marys4373]

I just had a bone marrow done and I am waiting for the results. I have yet to be diagnosed with GPA as I am waiting to see Dr. Specks at Mayo who is a specialist in GPA. I am my own advocate, you have to be or have someone to do it for you. My primary physician helps to coordination everything and I guess you could say she is my advocate also. As someone else said the Drs. are busy and do not take the time to read the notes. I am very lucky to be able to see my labs and Dr. notes. I even sat down with my rheumatologist for two hours reviewing all my medical records. Does anyone keep a note book and write down how they are feeling each day? I feel I have become obsessed with my medical conditions, it is no way to live. How do you overcome that?

[Dirty Don]

I think part of our obsession is the fact that WG, if it doesn't kill us, most certainly gets our 'healthy' attention! I am all too aware at times. I kept a journal for about a year and 3/4s...it has now faded with good news and redundancy...but it served its purpose in keeping my emotions and thoughts controlled and reasonably intact! Best of luck!

[vdub]

Sangye is a big advocate of journals as are some others. I kept one for a long time and then quit and then regretted quitting. I started again about 2 months ago. I always have my little nexus tablet with me and I found an app that is really good for the journal. Plus, since it's on the tablet and typing with the virtual keyboard, I keep it short. I put in my BP and how I generally feel and if I changed any meds. I also put in how much I sleep since that is a pretty good gauge of my fatigue level. I think the key is "just the facts, mamm, just the facts". Keep it short.

I got my thyroid out about a week ago. It was useless to me due to the loss of my pit from wegs. Removing the thyroid was pretty much to avoid potential cancer. The thyroid had nodules on it and was 3.5x bigger than normal. So, out it came -- no more worries about thyroid cancer.

[marys4373]

I think I will start a journal, what app did you use, vdub? If I keep a journal at least I can reference it when asked, "when" questions. I think keeping track of my emotions will look like my blood labs, up and down. How true dirty dan, your health does wake you up and realize you really need to make healthy choices for your well being. Wow, vdub your thyroid was big! Glad you have no more worries about thyroid cancer. (more meds for life) This is a wonderful site.

[pberggren1]

I am posting the following message from vdub. He cannot access this thread right now.

He says:

“I use an app called Diaro. It’s free. There are others that would be just as good, but this one does the job for me. I put my blood pressure on the top line and notes below. It automatically, records where I am from the gps in my tablet.”