Papillary kidney cancer metastasis to lungs and abdomen

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Rea
Rea Member Posts: 28
edited September 2014 in Kidney Cancer #1

Hello. Had right nephrectomy last January 2013 with an 11cm papillary tumor. Now after my ct scan they have found 3 nodules in my lungs and several in abdomen. I will a biopsy next week and my  onco told me I might start with voltrient. 

May ya I ask if anyone has been in voltrient and if I can still manage to work while under treatment?

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  • Ed Brabant
    Ed Brabant Member Posts: 61
    #2
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    Votrient

    I have been on Votrient for 19 months. Worked 99% of the time. My hair went white. BP went up. over all very managable. I have blood tests on average every month and a half. So far no issues with my blood. I take 800mg. I found that for me taking the medication in the morning works best for me. My scans average about every 5-6 months. Every scan but one showed shrinkage. One scan was stable.  Good luck...

  • Rea
    Rea Member Posts: 28
    #3
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    Ed Brabant said:

    Votrient

    I have been on Votrient for 19 months. Worked 99% of the time. My hair went white. BP went up. over all very managable. I have blood tests on average every month and a half. So far no issues with my blood. I take 800mg. I found that for me taking the medication in the morning works best for me. My scans average about every 5-6 months. Every scan but one showed shrinkage. One scan was stable.  Good luck...

    Thanks

    Thanks Ed for your reply. I would still need to work while on medication. I pray that this will work. I just had a baby last July 3 and I want to grow old with her :) 

    i he you don't mind if I ask, was yours papillary as well?

     

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #4
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    Rea said:

    Thanks

    Thanks Ed for your reply. I would still need to work while on medication. I pray that this will work. I just had a baby last July 3 and I want to grow old with her :) 

    i he you don't mind if I ask, was yours papillary as well?

     

     

    Oh dear, sorry for all you

    Oh dear, sorry for all you are going through. Gets scary doesn't it?

    Although I do not have mets, (radical left nephrectomy 12/30/13) so far soo good.

    But I do feel for you and will offer to support you in any way I can!

    There are many experts and survivors on this site. They will help you through this sharing their experience.

    Hugs to you and yours~!

    Jan

  • GSRon
    GSRon Member Posts: 1,303 Member
    #5
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    Hi Rea...  sorry about the

    Hi Rea...  sorry about the Mets..  Votrient is a very good drug, but..   It does cause some fatigue, and it is very important that your blood pressure be closely monitored as well as getting regular blood tests.  Votrient can be very hard on the Liver, and cause elevated Enzymes.

    BUT, I wonder why a biopsy..?  A biopsy is rarely needed with RCC.  And of course are you seeing an Oncologist with strong RCC back ground.?

    Good Luck..

    Ron

  • Rea
    Rea Member Posts: 28
    #6
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    Jan4you said:

    Oh dear, sorry for all you

    Oh dear, sorry for all you are going through. Gets scary doesn't it?

    Although I do not have mets, (radical left nephrectomy 12/30/13) so far soo good.

    But I do feel for you and will offer to support you in any way I can!

    There are many experts and survivors on this site. They will help you through this sharing their experience.

    Hugs to you and yours~!

    Jan

    Thanks

    Thanks  jan for your message, I really appreciate it :)

  • Ed Brabant
    Ed Brabant Member Posts: 61
    #7
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    Rea said:

    Thanks

    Thanks Ed for your reply. I would still need to work while on medication. I pray that this will work. I just had a baby last July 3 and I want to grow old with her :) 

    i he you don't mind if I ask, was yours papillary as well?

     

     

    Votrient

    You can also expect diarrhea. Certain foods will set it off more than others. For me it's beef and milk. 

  • Rea
    Rea Member Posts: 28
    #8
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    GSRon said:

    Hi Rea...  sorry about the

    Hi Rea...  sorry about the Mets..  Votrient is a very good drug, but..   It does cause some fatigue, and it is very important that your blood pressure be closely monitored as well as getting regular blood tests.  Votrient can be very hard on the Liver, and cause elevated Enzymes.

    BUT, I wonder why a biopsy..?  A biopsy is rarely needed with RCC.  And of course are you seeing an Oncologist with strong RCC back ground.?

    Good Luck..

    Ron

    Biopsy

    Thanks Ron. I was told to the biopsy first then proceed with treatment. honestly I don't know if my onco specializes in rcc. Here in Dubai you don't get much selection of doctors. Now that you have mentioned it, I will do more research on physicians here. I wild call him up tomorrow to confirm the necessity of the biopsy. Based on our last conversation itmis needed for staging and I guess to confirm the peritoneal nodes seen in my ct. 

    I hope i can still manage to work while on treatment. He gave me a heads up of 800mg a day. 

    Keepig og my faith in God. Gdo gave me a miracle baby 2 months ago. I survived the pregnancy despite all and I am certain that He will get me through this. I want to see my baby grow...

  • Rea
    Rea Member Posts: 28
    #9
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    Ed Brabant said:

    Votrient

    You can also expect diarrhea. Certain foods will set it off more than others. For me it's beef and milk. 

    Votrient

    Hi Ed thanks for the response. does votrient works with papillary rcc?

  • GSRon
    GSRon Member Posts: 1,303 Member
    #10
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    Rea said:

    Biopsy

    Thanks Ron. I was told to the biopsy first then proceed with treatment. honestly I don't know if my onco specializes in rcc. Here in Dubai you don't get much selection of doctors. Now that you have mentioned it, I will do more research on physicians here. I wild call him up tomorrow to confirm the necessity of the biopsy. Based on our last conversation itmis needed for staging and I guess to confirm the peritoneal nodes seen in my ct. 

    I hope i can still manage to work while on treatment. He gave me a heads up of 800mg a day. 

    Keepig og my faith in God. Gdo gave me a miracle baby 2 months ago. I survived the pregnancy despite all and I am certain that He will get me through this. I want to see my baby grow...

    Rea, once you have Mets, you end up at stage 4.. boooo...  My take is your Doctor is not sure it is a Met or not.. but sadly, odds are, it is.  Votrient tends to offer a lot of fatigue, it depends on what kind of work you do as to how it will go for you.  Oh yes, you will get all white hair... sorry..

    Ron

  • Rea
    Rea Member Posts: 28
    #11
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    GSRon said:

    Rea, once you have Mets, you end up at stage 4.. boooo...  My take is your Doctor is not sure it is a Met or not.. but sadly, odds are, it is.  Votrient tends to offer a lot of fatigue, it depends on what kind of work you do as to how it will go for you.  Oh yes, you will get all white hair... sorry..

    Ron

    Thanks Ron for all the info.

    Thanks Ron for all the info. It is really very helpful. I guess will really end up in stage 4. I was diagnosed stage 3 last year cause my tumor is 11cm. on an average, how long you need to take votrient?

  • GSRon
    GSRon Member Posts: 1,303 Member
    #12
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    Rea said:

    Thanks Ron for all the info.

    Thanks Ron for all the info. It is really very helpful. I guess will really end up in stage 4. I was diagnosed stage 3 last year cause my tumor is 11cm. on an average, how long you need to take votrient?

    Rea, hopefully you get to take it for many years... unless you end up NED or NVED, then it is decision time to stop or reduce dose or continue.

    Good Luck..

    Ron

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