Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

New here and wanted to say hello.

Forger
Forger Member Posts: 20

Hi, I'm Forger.  (Think hot steel, not hot checks..)

I have RCC on my right adrenal gland and some of the surrounding lymph nodes. DX'd last December.  (Thanks Santa...  I asked for a Tacoma, not a carcinoma.)  It is a recurrance from 2010 when I had a tumor removed from my right kidney.

They found a mass while doing a CT to rule out bowel obstruction when I went to the ER for severe abdominal pain.  That was pancreatitis. Went later for a biopsy that confirmed my RCC had returned and spread to the lymph nodes in the area.  Followed up with full body CT and bone scans that showed it was contained to just that area.

In January Doc Onco started me on Votrient* @ 800mg a day, but that promptly ate away the lining of my mouth and started turning ALL the hair on my body snow white. About two months of tinkering with the dosage and I'm down to 400 mg /day.  CT toward the end of May showed that the tumors had shrunk, not a lot, but enough to measure, and the mirror shows that I look like Papa Smurf.  The Ol' Lady says when the light catches my chest hair just right, it "Sparkles.."

(Just my luck, I can't look like a cool vampire, I gotta "Sparkle" like one of those tossers in Twilight...Frown)

Any way, that's the highlights of my latest Joust with the demonic C.

SO HOWDY EVERYBODY!!

(*Found this place while doing research on Votrient)

 

 

Comments

  • Kat23502
    Kat23502 Member Posts: 179
    edited June 2017 #2
    Welcome! Not glad to have you

    Welcome! Not glad to have you here under these circumstances but glad you found us! This is a fantastic group. What was your original tumor grade, size, stage, etc.? You may consider filling out your bio a bit so people in similar situations can chime in. Then again, everyone is helpful. 

     

    Seems Santa is getting hard if hearing these days and got you the wrong "-oma" so maybe be more specific and ask for something that has no rhyme, an orange perhaps?

  • Abunai
    Abunai Member Posts: 173
    Welcome.

    Welcome, Forger.

    Glad to hear that the Votrient seems to be working for you. I got the nasty side effects and still had tumor progression.

    Now that I'm off of it (and on to Opdivo) my hair is growing back dark at the roots. That makes for an interesting looking beard...almost black at the roots and gray to white on the surface.

    Wife says I look like Sean Connery.

    She loves Sean Connery.

    Score.

  • Jan4you
    Jan4you Member Posts: 1,327
    edited June 2017 #4
    A big, warm welcome, Forger

    A big, warm welcome, Forger~or Papa Smurf!

    We'll be here, beside you if you want us to be. But I am sorry to hear of the side effects, yet glad this treatment is showing some good results. There will be others here who will come on and say hello and offer more information I am sure.

    You may also want to try, Smartpatients.com too

    Sending you a healing hug,

    Jan

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    Welcome

    Welcome, Forger - 

    Papa Smurf? I've heard of people's hair turning white on Votrient, but you're the first person I've heard of whose skin has turned a weird color. Are you a percussionist? Maybe you could get a job in Vegas with Blue Man Group. 

    All the best, and let us know how the audition - or drum instruction - goes - 

    Jerzy