BLKJAK needs positive stories and good vibes!

mrs_blkjak
mrs_blkjak Member Posts: 103
in Kidney Cancer #1

My husband Brad will be starting on Votrient as soon as it arrives. He was diagnosed with Stage 4 Renal Cell Carcinoma. A 2cm mass in his left kidney has metastacized to his liver and several lymph nodes. We are praying for good results, few side effects, and many many more years together. He is nervous and needs some positive stories about people LIVING with cancer. I want to keep his mind in a positive place. And to believe that he is going to be well enough to enjoy life while taking Votrient.

 

Can you all help me?! Please?!

Comments

  • ga_dawg
    ga_dawg Member Posts: 11
    #2
    Be positive

    I too have stage IV RCC, diagnosed in August 2012. I have been taking votrient since November 2012, except for the month  of March due to having my kidney removed. I have had some side effects from the votrient, but nothing I can't deal with. The main side effects are fatigue (I take lots of naps), diarrhea (not too bad because the pain meds cause constipation) and pain in the tumors. I can deal with the pain as long as the tumors are dying. I just keep telling myself this is a necessary evil and it's beating the cancer. The votrient has worked well for me so far, my kidney tumor shrunk from 10 cm to 7 cm in 4 mths. The pathology on the kidney showed "extensive therapy effects" and my doctor was very happy. Some of the lung mets disappeared. I'm hoping now that the kideny is gone, the votrient can work more on the lungs, spine and scapula.

    My first oncologist gave me 3-10 months to live, it has now been 8 months and I'm still going strong. I travel from South GA to Houston every 8 weeks to see my oncologist at MD Anderson Cancer Center. I still work every day (6-7 hours) and my wife and I still do whatever we want, within reason. We have a wheelchair and when I am too worn out to walk, she pushes me. My oncologist in Houston told me not to go home and curl up and die and I haven't.

    The main thing your husband needs to do is stay positive. I tell myself I am going to beat this or at least keep it at bay! My wife is a godsend and keeps me grounded and makes sure I'm doing what I should be. Oh, and don't read studies on the internet, that info is old and very scary. This is the best place to get questions answered.

    Best Wishes to both you and your husband!

  • Galrim
    Galrim Member Posts: 315 Member
    #3
    A patient story that helped me a lot...

    ...and still does, is one of a fellow Dane who was diagnosed with RCC stage 3 in 2004.

    Back when I got my own diagnosis in 2010, and accidentally stumbled over his blog, his story was one I kept returning to whenever the fear of the disease and the future hit me. The reason? His story shows that even with a bleak prognosis, and a very bumpy road ahead, there is always hope. His blog can be found at http://www.nyrekræft.dk/NT_sygdomsforloeb.html

    Its very well written and really gives inspiration on how to overcome all things involved with this bloody disease and still keep the hope high.

    Its in Danish and Google translate does a **** job, so let me briefly recap a bit for you, the main "medical part": 

    January 2004 radical nephrectomy of a stage 3, 12 cm tumor. No mets at the time of surgery. 

    March 2007. Lung met. Surgically removed.

    October 2008. Another lung met. Again surgically removed.

    July 2009. Yet another lung met. Again surgical removal.

    November 2009. Lung met again. Several liver mets also.

    Surgery not an option now for him. So he went on to IL-2 HD treatments. First round in January didnt produce neither positive or negative results. no growth, but no reduction either. They then put him on another round of IL-2 HD in March 2010.

    Result after round 2: The liver mets had either gone or been re-classified as haemangiomas (no idea if thats the spelling in English also). The met in the lung had unfortunately grown, but since it was now solitary they opted for surgery again and removed it in june 2010.

    His story after that?

    Rest of 2010 - NED

    2011 - NED

    2012 - NED

    Control scan March 2013 - NED.

    In September he will be 3 years NED if all goes well...long term complete response? Cured? Who knows...time will tell. The main thing is, as I wrote to begin with, and is why his story meant and still means a lot to me, never give up. Never. Period.

    Or as he writes somewhere in his blog himself: "Someone has to get thorugh the needles eye, even if the chances are slim, so why shouldnt that someone be me..."

    I hope his story can inspire or give some ecouragement to your husband, just as it did to me.

    /G 

     

  • ivfour
    ivfour Member Posts: 49
    #4
    Great Results

    I was diagnosed with Stage IV kidney cancer with mets to the lungs in April 2011 after a motorcycle wreck.  I have been on votrient 400mg sconce July 2011 and have had had 3 sets of negative scans (12/2011, 6/2012, and 12/2012).  I am still on thvotirient with minimal side effects of the diarrhea, fatigue and some nausea.  I have been truly blessed and never imagined to have Fahd this great of response.  Good luck and pray it will do as well for you,

  • ivfour
    ivfour Member Posts: 49
    #5
    Great Results

    I was diagnosed with Stage IV kidney cancer with mets to the lungs in April 2011 after a motorcycle wreck.  I have been on votrient 400mg sconce July 2011 and have had had 3 sets of negative scans (12/2011, 6/2012, and 12/2012).  I am still on the votrient with minimal side effects of diarrhea, fatigue and some nausea.  I have been truly blessed and never imagined to have had this great of response.  Good luck and pray it will do as well for you,

  • mrs_blkjak
    mrs_blkjak Member Posts: 103
    #6
    ivfour said:

    Great Results

    I was diagnosed with Stage IV kidney cancer with mets to the lungs in April 2011 after a motorcycle wreck.  I have been on votrient 400mg sconce July 2011 and have had had 3 sets of negative scans (12/2011, 6/2012, and 12/2012).  I am still on the votrient with minimal side effects of diarrhea, fatigue and some nausea.  I have been truly blessed and never imagined to have had this great of response.  Good luck and pray it will do as well for you,

    Thank you for the positive

    Thank you for the positive stories. Ivfour - thats amazing! Thats exactly what I want to hear!! I'm happy for you that you've had such a great response and pray that my husband can have the same sort of response. Staying positive is hard, but we believe that it is important and work really hard to keep our focus on good things.

     

    Thanks!!

  • Eims
    Eims Member Posts: 423
    #7
    Galrim said:

    A patient story that helped me a lot...

    ...and still does, is one of a fellow Dane who was diagnosed with RCC stage 3 in 2004.

    Back when I got my own diagnosis in 2010, and accidentally stumbled over his blog, his story was one I kept returning to whenever the fear of the disease and the future hit me. The reason? His story shows that even with a bleak prognosis, and a very bumpy road ahead, there is always hope. His blog can be found at http://www.nyrekræft.dk/NT_sygdomsforloeb.html

    Its very well written and really gives inspiration on how to overcome all things involved with this bloody disease and still keep the hope high.

    Its in Danish and Google translate does a **** job, so let me briefly recap a bit for you, the main "medical part": 

    January 2004 radical nephrectomy of a stage 3, 12 cm tumor. No mets at the time of surgery. 

    March 2007. Lung met. Surgically removed.

    October 2008. Another lung met. Again surgically removed.

    July 2009. Yet another lung met. Again surgical removal.

    November 2009. Lung met again. Several liver mets also.

    Surgery not an option now for him. So he went on to IL-2 HD treatments. First round in January didnt produce neither positive or negative results. no growth, but no reduction either. They then put him on another round of IL-2 HD in March 2010.

    Result after round 2: The liver mets had either gone or been re-classified as haemangiomas (no idea if thats the spelling in English also). The met in the lung had unfortunately grown, but since it was now solitary they opted for surgery again and removed it in june 2010.

    His story after that?

    Rest of 2010 - NED

    2011 - NED

    2012 - NED

    Control scan March 2013 - NED.

    In September he will be 3 years NED if all goes well...long term complete response? Cured? Who knows...time will tell. The main thing is, as I wrote to begin with, and is why his story meant and still means a lot to me, never give up. Never. Period.

    Or as he writes somewhere in his blog himself: "Someone has to get thorugh the needles eye, even if the chances are slim, so why shouldnt that someone be me..."

    I hope his story can inspire or give some ecouragement to your husband, just as it did to me.

    /G 

     

    Galrim, thank you so much for

    Galrim, thank you so much for posting that story......and you are right there is always hope.....

    Eims x

  • ksaldivar1
    ksaldivar1 Member Posts: 10
    #8
    It's been over 3 since my husband was diagnosed stage 4

    BLKJAK,

    My husband was diagnosed with RCC in Nov 2009 (11cm) and 6 months later we found out it had metastacized to one of his adrenal glands & bones.  In between rounds of treatment he has remained pretty active and is still working.  Here is the short version of his history:

    Diagnosed Nov 2009/radical nephrectomy.

    Dec 2009 scan showed spot on contralateral adrenal gland, doc wanted to watch.

    March 2010 spot on adrenal gland increased in size, biopsy showed it was RCC, bone mets also found.

    July 2010 HD IL- (9 courses of treatment dudring both weeks of Round 1)

    Dec 2010 Adrenal tumor increased in size, also additional bone mets.

    March 2011 Clinical TrialNHI_NCT00720785 (Natural Killer Cells & Bortezomid)

    Oct 2011 Left Adrenalectomy

    March 2012-Met to right adrenal gland

    April 2012-began daily treatment of Inlyta 2X day 5mg.

    His last 4 scans have been stable, the met to the right adrenal gland is gone and he just has the bone activity.

    Our oldest son is graduating from high school next month.  We honestly did not believe he would be here, so have faith. Keep looking into any/all options and continue to enjoy life.

  • saintmont
    saintmont Member Posts: 63
    #9
    ksaldivar1 said:

    It's been over 3 since my husband was diagnosed stage 4

    BLKJAK,

    My husband was diagnosed with RCC in Nov 2009 (11cm) and 6 months later we found out it had metastacized to one of his adrenal glands & bones.  In between rounds of treatment he has remained pretty active and is still working.  Here is the short version of his history:

    Diagnosed Nov 2009/radical nephrectomy.

    Dec 2009 scan showed spot on contralateral adrenal gland, doc wanted to watch.

    March 2010 spot on adrenal gland increased in size, biopsy showed it was RCC, bone mets also found.

    July 2010 HD IL- (9 courses of treatment dudring both weeks of Round 1)

    Dec 2010 Adrenal tumor increased in size, also additional bone mets.

    March 2011 Clinical TrialNHI_NCT00720785 (Natural Killer Cells & Bortezomid)

    Oct 2011 Left Adrenalectomy

    March 2012-Met to right adrenal gland

    April 2012-began daily treatment of Inlyta 2X day 5mg.

    His last 4 scans have been stable, the met to the right adrenal gland is gone and he just has the bone activity.

    Our oldest son is graduating from high school next month.  We honestly did not believe he would be here, so have faith. Keep looking into any/all options and continue to enjoy life.

    good vibes

    Hi I have being votrient for 2 months I have stage iv with lung mets, I had right kidney removed in Sept 11, 2 big tumors on the one kidney. !2 month later found lung mets in August 12.

    Went on trail drugs for 2,months oncologist didnt think they were doing enough, then went on votrient in Feburary had scan last week and they showed all lung mets shrinking. Try and be positive and enjoy every day. I am lucky because I still work full time, play golf walk the dog and ride my bike. I try to focus on every day life and not on the cancer.

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