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ivfour
ivfour Member Posts: 49
I am 51 years old was diagnosed with right kidney cancer in April 2011 after being seriously injuand red in a motrocycle accident. My husband was injured as well and really thought I had hit my head hard when I told him the wreck was a blessing in disguise. The tumor was found during an abdominal CT to look for other injuries. I had surgery 4 days after the wreck after I was stabalized from from 8 fractured ribs, punctured lung, and liver lacerations. From reading everyone's posts, I was lucky that I did not have time to really think about the surgery to remove my kidney and think about the cancer. The tumor was over 10cm and it had metastatsized to my lungs and possibly liver. I believe it was the more common form of cancer (RCC) and I started Votrient daily by mouth in June (had to wait for wounds to heal). I have had one Chest CT scan that still shows very small nodules but unfortunately they forgot to tell the radiologist I had a scan from another hospital so that it could be compared. I am seeing an oncologist that I really trust but he is not a specialist in kidney cancer although he assures me he consults regularly with a specialist. I am scheduled to have repeat scans (brain, chest, abdomen, and pelvis)next week. Has anyone had experience with Votrient? My chest x rays that have been done have not shown significant changes.

Comments

  • newenglandguy
    newenglandguy Member Posts: 66
    Nothing against the
    Nothing against the Onocologist you have, but if it were me, I'd get a consult with an Onocologist who specializes in RCC and let him get a look at all the data. It is important to be trusting of any doctor providing you with care, but a specialist in the specific area you require access to the most up to date information is critical.
  • MikeK703
    MikeK703 Member Posts: 235
    Votrient
    Hi.

    If you're looking for info about Votrient (or other treatments) your best bet is to subscribe to the Kidney Cancer Online Support Group (all posts received via email but can be read online). There's a lot of talk about different treatments there. Here is the web page:
    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=kidney-onc

    Best of luck,
    Mike
  • foxhd
    foxhd Member Posts: 3,181 Member
    ivfour
    I also agree that you need to seek out a kidney cancer specialist. I saw 2 oncologist who provided little options. My current oncologist is a kidney specialist and she has access to treatments the other 2 could not provide. I have a pet scan and biopsy next week and hopefully will begin an extremely promising clinical trial of MDX-1106 right after. Do some reading on this board and research some available clinical studies. Good luck to you.
  • garym
    garym Member Posts: 1,647
    foxhd said:

    ivfour
    I also agree that you need to seek out a kidney cancer specialist. I saw 2 oncologist who provided little options. My current oncologist is a kidney specialist and she has access to treatments the other 2 could not provide. I have a pet scan and biopsy next week and hopefully will begin an extremely promising clinical trial of MDX-1106 right after. Do some reading on this board and research some available clinical studies. Good luck to you.

    Similar stories...
    Hi ivfour,

    I have experienced the response you get when you tell people that the luckiest thing that ever happened to me was a motorcycle accident that landed me in the ICU for 6 days. I had 6 broken ribs, a punctured lung, a fractured scapula, and a severe concussion, they found my little leach with a CT in the ER while assessing my injuries. I would echo the advice given above, with RCC outside of the kidney you want to go on the attack as aggressively as possible without waiting for information to be relayed from doc to doc. A specialist will be more in-tune with the specifics of your case if you are face to face, and they don't need to ask what the latest treatment options are.

    My best to you,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    garym said:

    Similar stories...
    Hi ivfour,

    I have experienced the response you get when you tell people that the luckiest thing that ever happened to me was a motorcycle accident that landed me in the ICU for 6 days. I had 6 broken ribs, a punctured lung, a fractured scapula, and a severe concussion, they found my little leach with a CT in the ER while assessing my injuries. I would echo the advice given above, with RCC outside of the kidney you want to go on the attack as aggressively as possible without waiting for information to be relayed from doc to doc. A specialist will be more in-tune with the specifics of your case if you are face to face, and they don't need to ask what the latest treatment options are.

    My best to you,

    Gary

    motorcycles.
    Seems there are alot of bikers on this site. Let's all get better and go for a ride. Maybe meet in Sturgis or Laconia next year. Or the year after that, or the year after that, or the year after that.....
  • Limelife50
    Limelife50 Member Posts: 476
    foxhd said:

    motorcycles.
    Seems there are alot of bikers on this site. Let's all get better and go for a ride. Maybe meet in Sturgis or Laconia next year. Or the year after that, or the year after that, or the year after that.....

    Go motorcycles
    I am also very thankful I hit a pothole with my motorcycle,the thought of what might of been had I not hit it makes me shudder.I still get the the question if I plan on riding a motorcycle since now I have only 1 kidney(just another ignorant question from people I guess who mean well) ,my answer is always heck yes can't wait for the warm weather next year
  • garym
    garym Member Posts: 1,647
    foxhd said:

    motorcycles.
    Seems there are alot of bikers on this site. Let's all get better and go for a ride. Maybe meet in Sturgis or Laconia next year. Or the year after that, or the year after that, or the year after that.....

    I'm in...
    Hey foxhd,

    That sounds like a great idea! I too will have to wait for better weather, we're just getting into the slippery stuff here in Michigan, but I'm good to go come about April.

    Lets go,

    Gary