2006 HAD KIDNEY REMOVED-IT'S BACK

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  • Steve51
    Steve51 Member Posts: 23 Member
    #22
    Footstomper said:

    Pazopanib

    Better known as Votrient. It has been taken by many people on this board but not me. 

    Pazopanib / Votrient

    I'm aware many have taken this drug, but did they take it when they were tumor free at the time? You have never taken Votrient, can I ask why?

    Thank you

  • Steve51
    Steve51 Member Posts: 23 Member
    #23
    todd121 said:

    City of Hope

    Hi Steve. I'm also at City of Hope. My oncologist is Dr. Pal. Who are you seeing from oncology?

    I had a met to my adrenal gland after 2 years cancer free. Now it's been almost 2 years since my adrenalectomy.

    I got a couple consults after the adrenal gland. I think if you're tumor free after surgery, there's no standard approved treatment. They had a couple of studies going on. They wanted me to do one after my adrenalectomy, but I decided no to do it. It was votrient or placebo I think. I'd done a similar study after my nephrectomy and decided I didn't want to do another.

    The oncologist told me if I had a recurrence within a year, they'd probably not do surgery again and instead do medication. If over a year out, and operable, they'd probably take it out.

    Glad you got through the surgery ok. I like City of Hope. I had my nephrectomy at UCI Medical Center and was very happy with the surgeons there. Somehow at COH, I felt like they do so many of these, that maybe it's a little too routine (on my adrenalectomy). I had a complication on the adrenalectomy. I was allergic to the surgical glue. Wow. It took a long time to heal and was very annoying. They acted like it was no big deal at all. I didn't care for that! I thought the nurses in the hospital were top notch.

    Wishing you the best. Hope you're done with this. I'm very curious what medication, if any, they will give you. Also if you don't mind, I'd love to know what oncologist you are seeing. I've only ever saw Dr. Pal at COH. I have had second opinions at Cedars and USC. BTW, Cedars has a kidney cancer support group that meets once a month. We have a speaker (RCC related) and fellowship. If you're interested send me a message and I'll send you the information.

    Best wishes,

    Todd

    Regards,

    Todd

    Thanks Todd

    Hello Todd,

    Dr. Pal is my guy. City of Hope has been really good for me so far. The facility and the people are fantastic. I am happy to be receiving treatment here.

    In my last post I explained COH asked to be part of a study. I believe you were asked and declined. I have several weeks to decide. I will be seeking information and feedback and then make a decision. 

    I am terrible with medical terms and understand them less. I noticed many people on this forum are very informed including yourself. I'm hoping I can make a good choice through my research and the info I find here.

    Thank you

  • Steve51
    Steve51 Member Posts: 23 Member
    edited December 2016 #24
    donna_lee said:

    Sorry about the unpleasant news...

    But the phrase, "it's back." is a bit off.  Because the cancer was never completely gone from your body.  It was just itty bitty and lurking about, ready to latch onto something and grow.

    That was something I, too, learned after 2006 and the big surgery.  That's why the NED-or No Evidence of Disease-result is worth cheering for all of us.  Because I got the suspicious enlargement or increase in size of a node two more times in the following 2 years.

    Take those meds and torment the heck out of the tumors.  Give 'm hell.

    Good Luck and Hugs

    donna_lee

    Thank you

    I appreciate your thoughts and info. 

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