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Thread: Some nuggets from yesterday's checkup at Cleveland Clinic

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    Default Some nuggets from yesterday's checkup at Cleveland Clinic

    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!).

    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.

    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.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Quote Originally Posted by Pete View Post
    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.
    Diagnosed April 1995

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    Good deal, Pete! Hope you can get off some of that stuff.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    I will continue to send good thoughts your way that you might be able to get off the MTX!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Great report Pete.

    Best of wishes for an easy med reduction
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Pete,
    That's really good news, keep up the good work!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Quote Originally Posted by Pete View Post
    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!).

    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.

    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!!!

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    Daystarr8, I hope your treatment goes well and that you are able to beat this cancer.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Quote Originally Posted by daystarr8 View Post
    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
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Debra C View Post
    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.

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