Votrient and other RCC Procedures - scared family with questions

Crislyn
Crislyn Member Posts: 3
in Kidney Cancer #1
Hello,
My husband was diagnosed with stage IV renal cell carcinoma four months ago. We have two children and this has been a traumatic time. As I am sure many people on this forum can understand, we are facing losing husband (and best friend), father, and our home.
Since his diagnosis he has had brain surgery to remove a tumor in his head, stereotactic radiosurgery on two additional brain tumors, radical kidney nephrectomy which removed a 4 pound tumor, and attempted IL-2 which was cancelled after the first round because his liver and kidney almost failed.
In addition to still having disease at the kidney site, he has two tumors in glands in the lungs and one on his sternum bone which is causing him much pain. We are meeting with a doctor tomorrow to see if stereotactic radiosurgery or stereo frequency ablation can be conducted on any of his current tumors. After that, he is going to be put on votrient.
Can anyone tell me if they have had stereotactic radiosurgery or stereo frequency ablation on a bone or gland tumor? Also, I would appreciate hearing anyones stories on votrient. We pray that we will be able to live a somewhat normal life on this drug, at least for a while. My husband is a contractor and unfortunately his work is very physical. I am not sure if there is any hope for him going back to work at some point, but we are fighting to keep our children in their home.
All the best to everyone,
Crislyn

Comments

  • Limelife50
    Limelife50 Member Posts: 476
    #2
    RFA
    Hi sorry about how things are right now for your family,i did have a procedure called Radio Frequency Ablation to treat a 1.4 cm tumor in my remaining kidney on 05/02/12 ,did CT scan on 06/04/12 and it looks as though the procedure was a total success,some of the other members on this board are better prepared than myself to discuss the other aspects of your post,i do so much hope for the best possible outcome for your family
  • garym
    garym Member Posts: 1,647
    #3
    Votrient etc...
    Dear Crislyn,

    I'm very sorry to hear about what you and your family are going through thanks to RCC, my heart goes out to you and we're here to help if we can. There are several members and caregivers here with experience using several therapies including Votrient, you will likely be hearing from some of them. If you type Votrient in the search box at the top of the page it will help narrow things down, or you can browse through the titles of the various threads and you'll see it mentioned often.

    I'll steal a line from one of our top research members, Texas Wedge, "On a topic as technical as this you will probably find out more quickly on the KIDNEY-ONC mailing lists than here, where the focus in more on support than on detailed technical information." as I understand it there are technical people there that are very good at responding to questions regarding possible treatment options.

    There is hope and there are new therapies and trials in the pipeline, give your husband a hug from me and tell him to keep fighting. Keep us posted.

    Good luck and Godspeed,

    Gary
  • alice124
    alice124 Member Posts: 896 Member
    #4
    garym said:

    Votrient etc...
    Dear Crislyn,

    I'm very sorry to hear about what you and your family are going through thanks to RCC, my heart goes out to you and we're here to help if we can. There are several members and caregivers here with experience using several therapies including Votrient, you will likely be hearing from some of them. If you type Votrient in the search box at the top of the page it will help narrow things down, or you can browse through the titles of the various threads and you'll see it mentioned often.

    I'll steal a line from one of our top research members, Texas Wedge, "On a topic as technical as this you will probably find out more quickly on the KIDNEY-ONC mailing lists than here, where the focus in more on support than on detailed technical information." as I understand it there are technical people there that are very good at responding to questions regarding possible treatment options.

    There is hope and there are new therapies and trials in the pipeline, give your husband a hug from me and tell him to keep fighting. Keep us posted.

    Good luck and Godspeed,

    Gary

    Votrient
    Crislyn-My heart hurts for you. This kind of diagnosis is always traumatic but on top of the diagnosis and financial concerns, you have two children. I am so sorry.

    But while I can't help you on the surgeries you mention, I did just post my husband's positive response to an MDX1106/Votrient trial at Johns Hopkins. I think Gary gave you good advice with a reference to the Acor site. I wonder too if you might want to contact the National Cancer Institute for direction.

    Just try to stay optimistic knowing that new treatments and research regarding kidney cancer are showing up almost daily. I know when my husband was first diagnosed, his doctor made the statement kidney cancer is never good news. But—if you have to be diagnosed with cancer—kidney is a good choice. Said he couldn’t name another cancer making more progress. Has your husband ‘s Dr. discussed any clinical trial possibilities?

    Please keep us updated on y our husband. Or just come here if you need someone to listen. Keeping you and your family in my prayers.

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