Needing Support

jeffstl34
jeffstl34 Member Posts: 8
in Kidney Cancer #1

In March I had a partial nephrectomy.  My 3 month scan showed that it was possible that RCC came back.  My 6th month scan showed that it had probably matastasized to my liver.  Today I got the results back that it had mets there.  I'm just wanting to know how people who have been in my shoes and taking the medication have handled all of this.....I'm 52, can I still work while on the medication?  What have you done that gave you the most hope?  Any insight and suggestions are appreciated.  Luckily I hear the oncologist that I have an appointment with is really good.

Thank you in advance for your support,

Jeffstl34

 

Comments

  • marosa
    marosa Member Posts: 334 Member
    #2
    hi jeffstl32

    I really don't have the knowlegde to give you the info and advice you are searching for but just wanted to say Im so sorry to hear of the results you got today.  I know other members will chime in and give you the info you are asking for.  Wishing you the best in your treatment.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #3
    Marosa is right!! Those who

    Marosa is right!! Those who have been where you are will definitely help you out. I wish you all the best!!!!!!

  • Allochka
    Allochka Member Posts: 1,069 Member
    #4
    Hi,

    Hi,

     

    would you please remind us of your initial stage and tumor's grade? Thus it will be easier to advise smth. And we do have people here who had mets and are now doing great. They will definitely join the conversation when they see this post

  • rhominator
    rhominator Member Posts: 233 Member
    edited October 2017 #5
    Hi Jeffstl34

    I've been living with stage IV clear cell mRCC for four years now.  You can click on my profile for details, but the summary of it is, after a full nephrectomy I was put on Votrient, and after two years I developed some nodes in my lungs and again about a year later. Then I switched to Opdivo. For the most part Opdivo is working. Where it's not we'll treat with radiation.

    To answer your question about medication: I've had to deal and work around the side effects of Votrient, which can be hard, but manageable. While I was on it I traveled and spoke at conferences, rode my motorcyles and played guitar on my church's praise team. And, if you can believe it, I landed my dream job as a NASA software engineer.  After switching to Opdivo the side effects are much, much better and I increased my travel range. I just got back from Italy after speaking at a conference at the European Space Agency!

    But none of that is a brag about me -- it's a brag about what God and Christ have allowed me to do while living with cancer. God's given me a purpose that I've yet to fullfill.  My aim is to finish well.

    I hope you can find a medication that works for you.  Also, you should be able to work with your doctor to adjust the dosage to ensure a good quality of life. My doctors have been very good at that.  Meanwhile, screw cancer!  Don't let it get the upper-hand mentally or physically.  Stay actively engaged in something.

    Best regards,

  • Dutch1
    Dutch1 Member Posts: 152
    #6
    I'm with Rhominator

    Hi;

    I am also living with stage 4 RCC.  It was almost 5 years ago when I went under the knife.  I have gone through two recurrences and both have been treated successfully.  We are all fortunate that there are new (within the last 10+ years) drugs out there which are often very effective.  So, don't despair.  With a partial, you must have been a lower stage cancer, so I think that you should be looking forward to successful treatment.  Be watchful, but be optimistic.

     

  • jeffstl34
    jeffstl34 Member Posts: 8
    edited November 2017 #7
    Allochka said:

    Hi,

    Hi,

     

    would you please remind us of your initial stage and tumor's grade? Thus it will be easier to advise smth. And we do have people here who had mets and are now doing great. They will definitely join the conversation when they see this post

    Hi

    Thank you for your response.  My initial stage was 2 and my tumor grade was 3.

     

  • jeffstl34
    jeffstl34 Member Posts: 8
    #8
    Thank you

    Thank you all for replying.  You give me hope in this entire process.  I know there will be a lot of rough days ahead but your words do give me a lot of hope.

     

  • angec
    angec Member Posts: 924 Member
    edited November 2017 #9
    jeffstl34 said:

    Thank you

    Thank you all for replying.  You give me hope in this entire process.  I know there will be a lot of rough days ahead but your words do give me a lot of hope.

     

    Sorry to hear what you are

    Sorry to hear what you are dealing with. My son has ocd so i know that adds to the burden.  Get a copy of ALL scan reports, hospital papers, etc. Any test you do get the report and keep a file. If you have a copy, give us an idea i

    Of the size and grade of tumor. It must have been small or in a place where they didn't have to remove the whole kidney. That is good. What info do you have on the liver met and is that the only one? You can work with meds and depending on what they put you on, if needed, the side affects vary. Try for opdivo which is an immunotherapy and most of the time less affects or minor.  Hopefully you are seeing an oncologist that has experience with rrc. All the best to you. You can do this! Hugs!

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