Papillary Renal Cancer

cheryltwv
cheryltwv Member Posts: 2
in Kidney Cancer #1

I'm new to this forum and I'm wondering how many of you have papillary cancer? I was diagnosed on June 4 of this year and I was surprised to say the very least. I had no symptoms or pain at all. I noticed blood in my urine one morning and went to the walk in clinic to check if I had a UTI. The main reason I even went to the clinic was because our family vacation was starting on the folowing Friday and I didn't want to deal with a UTI while on vacation. Long story short, had a scan that revealed my right kidney was totally involved by a large tumor.  Surgery for radical nephrectomy on July 11. No treatment was started after surgery and I didn't get pathology for 3 weeks and then post op evaluation.  Dr. still did not recommend treatment but scheduled scans for 3 months post op. First scan on Oct. 6 showed nodules on right adrenal and left lung and was referred to an oncologist. Just finished my first week on Sutent and am waiting on new scans. My main problem is that papillary cancer is so rare there is almost no information to be found. I am working to get into a study at NIH/ACI in Bethesda. If there's anyone here who is dealing with papillary I would love to hear from you. 

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    #2
    Info

    I would like to suggest that you register at:

    www.SmartPatients.com

    It is free.  There are several papillary patients and/or their caregivers there and lots of valuable information.

  • cheryltwv
    cheryltwv Member Posts: 2
    #3
    NanoSecond said:

    Info

    I would like to suggest that you register at:

    www.SmartPatients.com

    It is free.  There are several papillary patients and/or their caregivers there and lots of valuable information.

    Info

    Thank you.

     

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    #4
    cheryltwv said:

    Info

    Thank you.

     

    So Sorry to Hear

    Cheryltwv,

     

    All I can say is that you are not alone and that you will find a lot of support on this website, it has been a God send for me and I so very much appreciate the kindness that so many are willing to share stories, thoughts, treatments, etc.  My suggestion to you is to contact the Dana Farber Cancer Institute in Boston to see if the Clinical Trial for Papillary is closed or still open.  I have pRCC type 2 and I am on the 14-175 Clinical Trial Protocol.  I am taking a drug known now as AZD6094, it is a phase 2 trial and I am doing ok, but I have no idea about the progression or depression of my disease.  I have had nausea and I am a little tired, but I tend to advance the theory that my wife has me on an Alkaline diet (mostly greens and veggies) and that I am lazy! 

    Let me know if you have any questions, you can read my bio and see what I have been through.  I am now in a clinical trial that may or may not have any success, but this is what I am down to.  Keep your head up, be steadfast in your treatment and hold on to the belief that you will get better and that this is simply a slight hurdle in the marathon called life!

     

    God bless and again let me know if you have any questions or I can share any of my story further with you.

     

    Take care

     

    Tom

     

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #5
    I have papillary, as well...

    Pleased to meet you... just wish it wasn't HERE. I have been back and forth with this disease since imy diagnosis in 2009.  The latest I can tell you is votient worked well for me for 9 months before if had no more efficacy, then gemcitabine + sutent worked well for 9 months. All the other starts and in-betweens were two surgeries-- the original surgery for the condition, then removal of a single lung met, IL-2, a study drug (got kicked out for growth, and Inlyta.

    I am probably moving to another study in a few week, which includes bevacizumab/Avastin and a chemo drug.  I will let everyone know how it goes.

    Feel free to ask me anything!

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