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View Full Version : Some nuggets from yesterday's checkup at Cleveland Clinic



Pete
10-18-2014, 02:30 AM
I had a good checkup with Dr. Villa Forte yesterday. Spent about 40 minutes with her and got everything on my mind addressed (lists help!).:biggrin1:

I asked her how she would differentiate between kidney involvement and bladder cancer (I was on ctx for 16 months). She said the tests are essentially the same, but in the microscopy of the urinalysis, there will be other types of cells in the urine which are indicative of cancer. That would lead to a cystocopy (no fun, but not as scary as I thought it was going to be when I had my first one 2.5 years ago) and other tests to confirm the diagnosis.

We chatted about the impact of Dr. Hoffman's upcoming retirement on her. She's happy about it because she will pick up a number of new (to her) patients - all of whom have some type of vasculitis. She now only sees vasculitis patients - 12 a day, 5 days a week. She is taking new patients.:thumbup:

I'm holding the pred taper at 3 mg/month for the next three months while reducing mtx to 15 mg/wk (6 pills). Hope the minor side effect of light fatigue on the day after I take mtx goes away. If I have no symptoms during the next three months, I expect to either resume the pred taper or come off mtx (15 mg/wk is the minimum dose). If I had my druthers, I'd come off mtx as I have never had any issues with pred other than weight gain and occasional sleeplessness at higher doses (> 40 mg/day. (I'd also like to resume having a nice glass of wine or a cold real beer a bit more frequently than once every month or six weeks.)

At any rate, I'm grateful for the current state of my health and the excellent care I get from Dr. Villa Forte and my local PCP.

gilders
10-18-2014, 02:36 AM
At any rate, I'm grateful for the current state of my health and the excellent care I get from Dr. Villa Forte and my local PCP.

That's great to hear Pete. Satisfaction with current health and satisfaction with your care is 90% of the battle won.
I hope it continues.

vdub
10-20-2014, 05:56 AM
Good deal, Pete! Hope you can get off some of that stuff.

NikkiNicole
10-20-2014, 06:13 AM
I will continue to send good thoughts your way that you might be able to get off the MTX!

mishb
10-20-2014, 07:44 AM
Great report Pete.

Best of wishes for an easy med reduction

Jaha
10-20-2014, 09:59 AM
Pete,
That's really good news, keep up the good work!:thumbsup:

daystarr8
10-25-2014, 04:13 PM
I had a good checkup with Dr. Villa Forte yesterday. Spent about 40 minutes with her and got everything on my mind addressed (lists help!).:biggrin1:

I asked her how she would differentiate between kidney involvement and bladder cancer (I was on ctx for 16 months). She said the tests are essentially the same, but in the microscopy of the urinalysis, there will be other types of cells in the urine which are indicative of cancer. That would lead to a cystocopy (no fun, but not as scary as I thought it was going to be when I had my first one 2.5 years ago) and other tests to confirm the diagnosis.

We chatted about the impact of Dr. Hoffman's upcoming retirement on her. She's happy about it because she will pick up a number of new (to her) patients - all of whom have some type of vasculitis. She now only sees vasculitis patients - 12 a day, 5 days a week. She is taking new patients.:thumbup:

I'm holding the pred taper at 3 mg/month for the next three months while reducing mtx to 15 mg/wk (6 pills). Hope the minor side effect of light fatigue on the day after I take mtx goes away. If I have no symptoms during the next three months, I expect to either resume the pred taper or come off mtx (15 mg/wk is the minimum dose). If I had my druthers, I'd come off mtx as I have never had any issues with pred other than weight gain and occasional sleeplessness at higher doses (> 40 mg/day. (I'd also like to resume having a nice glass of wine or a cold real beer a bit more frequently than once every month or six weeks.)

At any rate, I'm grateful for the current state of my health and the excellent care I get from Dr. Villa Forte and my local PCP.

I'm so happy for you. I'm about to start treatment after stage 4 bladder cancer from cytoxin. So I'm super nervous!!!

Pete
10-26-2014, 12:17 AM
Daystarr8, I hope your treatment goes well and that you are able to beat this cancer.

Debbie C
10-26-2014, 12:00 PM
I'm so happy for you. I'm about to start treatment after stage 4 bladder cancer from cytoxin. So I'm super nervous!!!

How long were you are cytoxin ? It's scary what the drugs they give us to cure one thing gives us something else. I prayer all goes well for you in your treatments and that you will get through all of it just fine. Keep us posted

daystarr8
10-28-2014, 11:36 AM
How long were you are cytoxin ? It's scary what the drugs they give us to cure one thing gives us something else. I prayer all goes well for you in your treatments and that you will get through all of it just fine. Keep us posted

I beat cancer 11 years ago. I had 2two 5 year periods of cytoxan and I think one 3 year so a lot of it. Back then there wasn't much else and methotrexate came into play more so during my remission times. I'm done with cancer but I'm going to be battling WG now #5 relapse I think. But I had a combined 20 years of WG free.

rebekah
10-29-2014, 01:26 AM
So glad to hear you're doing well, Pete! I hope everything goes smoothly while tapering the meds. :)

KathyB
10-29-2014, 04:58 AM
Hey Pete! I'm just getting back into posting on this site and was so happy to see you had great test results! Woohoo! Keep up the good work!!

daystarr8
11-05-2014, 02:57 PM
Always glad to here good news with WG. I need to find the best doctors to address my subglotic stenosis. I'm going to travel to the best. I will be needing dilation. Any names of doctors who do this and do it routinely would be helpful. I have read a lot of good posts about Cleveland clinic I just saw local pulmonologist and his advice was to find the best. Any advice would be great! Thanks

loisann11
11-06-2014, 03:17 AM
when you say WG free is that without drugs? Or were you on something?

loisann11
11-06-2014, 05:45 AM
Not sure my last post went to the right place. You said you were 20 years WG free, was that without drugs?

daystarr8
11-06-2014, 06:10 AM
Loisann11. Yes I have had a 9 year remission and now 11 years and counting. I take bactrim twice a day Before bactrim. I relapsed often

loisann11
11-06-2014, 03:32 PM
Loisann11. Yes I have had a 9 year remission and now 11 years and counting. I take bactrim twice a day Before bactrim. I relapsed often

This is all fairly new to me. I started with problems just before Christmas last year. Double pneumonia. Was at Banner in Sun City Az, Dr I had was looking for cause and came up with possible WG. I was on 40mg prednisone and got better so came back to MN where I live. Was weaned off of Pred but was not feeling good about Easter so went to ER. Was in for 8 days as they did kidney biopsy to verify the WG. I did not have any problems with kidneys that I was aware of but Kidney Dr. was one who took over. Anyway after replacing my platelets with new ones, going on 60mg pred along with Bactrim, etc. I got better. I also got 4 infusions of RTX. My biggest problems were the side effects of the Pred. I had all of them. Finally told Dr. I would be in bed full time if I didn't get off it. So I got better. I am now on Imuran, bactrim and 2.5mg of Pred. I feel just like I did before I ever got sick. 30 lbs. heavier and all my arthritis back. HATE taking meds. Next week I am going to Mayo Clinic for second opinion. I just don't feel sick.... good to hear about your remission...

daystarr8
11-06-2014, 03:55 PM
Let me know how the Mayo appointment goes. I'm glad you are feeling much better. Keep me posted

Dirty Don
11-07-2014, 03:50 AM
loisann, I was at Banner Boswell too...they had the same reaction to me, finally sent pathology to Mayo Phx, they had it overnite, so I am there now. Banner was very slow at putting a team together, so Mayo it was.

loisann11
11-07-2014, 08:21 AM
I had good Dr. just couldn't stay in PHX. much longer. Needed to get home to MN. They couldn't do biopsy on my lungs since they were in real bad shape. Spitting up a lot of blood at the time with the double pneumonia. Was on oxygen for a month. At least they told me what they suspected so I could go research on the internet. Once I read all the early symptoms I was pretty sure I had just gone through most of them. 40 mg pred was do-able but I ate a lot. Was on that with a taper till mid Feb. Felt fine. Got home by March 1st. By Easter I knew I probably had it as was getting tired again and breathing was getting harder. So figured trip to ER. Lung Dr. laughed at me and wondered why I thought I had WG... I said because other Dr. said so. Lucked out I guess since Kidney Dr. said they were involved so he did the biopsy on them to verify others were right. Next couple months I was tired a lot but otherwise good. 60 mg Pred was the killer though. Back got very bad, hard to walk, then my eyes got really red, watery, sore. Went to eye Dr. but he agreed it was the Pred. So back to Dr. and told him I had cut back to 40... he said I could go to 30. Pred side effects took a good 6- 8 weeks to clear up. Down to 2.5 and wonder why I even bother, pills are so small. Been on 200mg of Imuran 9-2-2014 and only had lab work done once. I never saw or heard anymore on how I am doing. Figured it couldn't hurt to get 2nd opinion from the Mayo. Can't wait to get there. I really want to cut back on drugs if at all possible. I read a lot of threads on here and think that I can't really what you all seem to have. I just don't feel like I have anything wrong with me. Maybe they made a mistake... I know I am really one of the lucky ones and can only hope there are more.

MaxD
11-07-2014, 09:59 AM
Always glad to here good news with WG. I need to find the best doctors to address my subglotic stenosis. I'm going to travel to the best. I will be needing dilation. Any names of doctors who do this and do it routinely would be helpful. I have read a lot of good posts about Cleveland clinic I just saw local pulmonologist and his advice was to find the best. Any advice would be great! Thanks

daystarr8: Dr Robert Lebovics specializes in ENT surgery for vasculitis patients. He's in New York City and several members on this forum are his patients. He has been operating on WG patients for many years, is a really nice person, and on the board of the vasculitis foundation as well.

I heard him speak at a workshop last month about tracheal stenosis surgery. He's also involved in fascinating research on constructing new trachea using a 3D scan of the patients trachea, printing an identical copy on a 3D printer, seeding that with the patients stem cells and doing a transplant. Sounds like science fiction? Won't be tried in humans anytime soon, but he and his colleague showed pictures of pigs in whom these techniques have been tested. The little piggy with a constricted trachea went from 50 lbs to 185lbs within a few weeks of the transplant.

That aside, all the best to you.

jakekell
11-07-2014, 03:46 PM
Glad to hear your check up is good, such a smart lady. Villa Forte has me on the 15 mg of mtx/pred 5 mg as trying to get to zero due to bone damage in my hips. I have had so many colds from the Grand/Great Grandkids that keep having to stop the MTX. We are going to leave for Naples soon as need to get out of the cold and away from so many kids unfortunately. I am having some problems with feeling sick to my stomach, once and awhile get sick have you had that issue?

Mary

jakekell
11-07-2014, 03:56 PM
Cleveland Clinic Dr. Ville-Forte was the best thing that has happened to me in years. I found that I was going to a Remy here that shouldn't be treating Wegs so life is getting better again. A second opinion never hurts in my case I now have a new doc that knows how to handle wegs!

daystarr8
11-08-2014, 01:24 PM
daystarr8: Dr Robert Lebovics specializes in ENT surgery for vasculitis patients. He's in New York City and several members on this forum are his patients. He has been operating on WG patients for many years, is a really nice person, and on the board of the vasculitis foundation as well.

I heard him speak at a workshop last month about tracheal stenosis surgery. He's also involved in fascinating research on constructing new trachea using a 3D scan of the patients trachea, printing an identical copy on a 3D printer, seeding that with the patients stem cells and doing a transplant. Sounds like science fiction? Won't be tried in humans anytime soon, but he and his colleague showed pictures of pigs in whom these techniques have been tested. The little piggy with a constricted trachea went from 50 lbs to 185lbs within a few weeks of the transplant.

That aside, all the best to you.

That is amazing information! Thank you for Sharing

daystarr8
11-08-2014, 01:26 PM
Mary when I was on prednisone and cyclophosphamide in the mornings when my stomach was empty I always felt nauseous. Once I ate it was better hope this helps

jakekell
11-08-2014, 02:47 PM
Thanks I will try eating right away as I don't always do that and see if it helps.

drz
11-14-2014, 03:11 PM
Always glad to here good news with WG. I need to find the best doctors to address my subglotic stenosis. I'm going to travel to the best. I will be needing dilation. Any names of doctors who do this and do it routinely would be helpful. I have read a lot of good posts about Cleveland clinic I just saw local pulmonologist and his advice was to find the best. Any advice would be great! Thanks

Did the vasculitis foundation offer any clues on where to look? Looking at the specialities of their consultant might be good way to start as well as calling any larynxologist you can find. I think this list of authors for an article on treating subglotic stenosis might also be a good place to start. Article: Medscape: Medscape Access (http://emedicine.medscape.com/article/865437-treatment#a1135)

Contributor Information and Disclosures
Author
James D Garnett, MD Director of Voice and Swallowing Center, Associate Professor, Department of Otolaryngology-Head and Neck Surgery, University of Kansas Medical Center

James D Garnett, MD is a member of the following medical societies: American Academy of Otolaryngic Allergy (http://www.aaoaf.org/) and American Academy of Otolaryngology-Head and Neck Surgery (http://www.entnet.org/)

Disclosure: Nothing to disclose.
Specialty Editor Board
Anthony P Sclafani, MD Director of Facial Plastic Surgery and Surgeon Director, New York Eye and Ear Infirmary; Professor of Otolaryngology, New York Medical College

Anthony P Sclafani, MD is a member of the following medical societies: American Academy of Facial Plastic and Reconstructive Surgery (http://www.facemd.org/index.asp), American Academy of Otolaryngology-Head and Neck Surgery (http://www.entnet.org/), and American College of Surgeons (http://www.facs.org/)

Disclosure: Aesthetic Factors, Inc. Salary Consulting; Meditech Medical Enterprises Consulting fee Independent contractor
Francisco Talavera, PharmD, PhD Adjunct Assistant Professor, University of Nebraska Medical Center College of Pharmacy; Editor-in-Chief, Medscape Drug Reference

Disclosure: Medscape Salary Employment
Robert M Kellman, MD Professor and Chair, Department of Otolaryngology and Communication Sciences, State University of New York Upstate Medical University

Robert M Kellman, MD is a member of the following medical societies: American Academy of Facial Plastic and Reconstructive Surgery (http://www.facemd.org/index.asp), American Academy of Otolaryngology-Head and Neck Surgery (http://www.entnet.org/), American College of Surgeons (http://www.facs.org/), American Medical Association (http://www.ama-assn.org/), American Neurotology Society (http://www.americanneurotologysociety.com/), American Rhinologic Society (http://www.american-rhinologic.org/), American Society for Head and Neck Surgery (http://www.headandneckcancer.org/), Medical Society of the State of New York (http://www.mssny.org/), and Triological Society (http://www.triological.org/)

Disclosure: Nothing to disclose.
Christopher L Slack, MD Private Practice in Otolaryngology and Facial Plastic Surgery, Associated Coastal ENT; Medical Director, Treasure Coast Sleep Disorders

Christopher L Slack, MD is a member of the following medical societies: Alpha Omega Alpha (http://www.alphaomegaalpha.org/), American Academy of Facial Plastic and Reconstructive Surgery (http://www.facemd.org/index.asp), American Academy of Otolaryngology-Head and Neck Surgery (http://www.entnet.org/), and American Medical Association (http://www.ama-assn.org/)

Disclosure: Nothing to disclose.
Chief Editor
Arlen D Meyers, MD, MBA Professor of Otolaryngology, Dentistry, and Engineering, University of Colorado School of Medicine

Arlen D Meyers, MD, MBA is a member of the following medical societies: American Academy of Facial Plastic and Reconstructive Surgery (http://www.facemd.org/index.asp), American Academy of Otolaryngology-Head and Neck Surgery (http://www.entnet.org/), and American Head and Neck Society (http://www.headandneckcancer.org/)

Disclosure: Medvoy Ownership interest Management position; Cerescan Imaging Honoraria Consulting

Another source of self proclained experts is: http://www.chop.edu/conditions-diseases/subglottic-stenosis

If they work with Merkel in Philadelphia they might also know a bit about GPA. I think it would take a few phone calls but I might also call the centers for GPA research I listed in another recent post and ask about your condition to see if they have experts on board in their center.

daystarr8
11-14-2014, 03:33 PM
Wow drz that's a list!!!! To answer your question. Dr Sharon Chung San Francisco who is on the Vasculitis foundation was recommended so I called her and left a message on her voicemail. She called me back in 3 minutes!!! She recommended two drs is ENT that she works with often and she highly recommend I see one. So I have an appointment on Monday 11/17 to see dr Katherine Yung I'm still not sure if I'm in a flare or if it's the damage in the nasopharyngeal area and the subglottic area. I was tapering prednisone and once I got to 15 mg the symptoms got worse again but at 20mg I'm better. Not where I was a few months ago but better. I dont know I guess an experienced eye will look down there and hopefully know something more certain. If I need treatment/meds I want to get started so life can continue. But if it's stenosis only let's get the dilation done. I'm ready for what ever the answer is. I thank you so so much for all the information you have shared with me. If I feel the dr Yung is not the right fit I have many options here to research. I hope all is well with you. I'll keep joy and everyone posted after Monday.

Pete
04-16-2015, 06:01 AM
Had my six-month checkup with Dr Villa Forte today. All continues to be well with me. I asked her about getting off mtx. She recommended against it because her research indicates that those who go off mtx have a 40% chance of having a flare within a year. So, the slight fatigue for 36 hours is a small price to pay.

I will resume my pred taper. I've been on 3 mg/day since last September. Hope to be off altogether in 3-4 months.

jakekell
04-16-2015, 11:16 AM
Had my six-month checkup with Dr Villa Forte today. All continues to be well with me. I asked her about getting off mtx. She recommended against it because her research indicates that those who go off mtx have a 40% chance of having a flare within a year. So, the slight fatigue for 36 hours is a small price to pay.

I will resume my pred taper. I've been on 3 mg/day since last September. Hope to be off altogether in 3-4 months.


Hi Pete,

Glad to hear your check up was good with Dr. Villa-Forte. I see her May 11th, we are going to drive to Cleveland on our way home from FL as been over 6 months. I am down to 2 mgs and can't go lower every time I even go down to 1 1/2mg it effects me. I ask Villa-Forte about that and she I said some people never can get off it just low. I have been on it for over 9 years as a no one knew what to do before dx.

I started back on same treatment as you last August, she told me then she most likely will keep me on it. I am doing much, much better so will deal with it.

Mary

rebekah
04-16-2015, 02:28 PM
I'm so glad to hear that you're doing well, Pete! Not being able to get off Methotrexate might stink, but it sure beats a flare... anything to prevent that. I hope you have continued health and can get off pred soon! :)

Bloom
08-03-2015, 02:14 AM
Hi Jakell, I started to feel sick when I tapered down the pred, I hadn't had it like that before. Mostly it happens in the afternoon, sometimes when I'm eating.

jakekell
08-05-2015, 11:35 PM
Hi Jakell, I started to feel sick when I tapered down the pred, I hadn't had it like that before. Mostly it happens in the afternoon, sometimes when I'm eating.

Bloom,

I start getting hives at pred less than 2, hives have been a large part of my wegs. I think I maybe stuck with the 2mg of pred.