CT Scan results not so good

JoeyZ
JoeyZ Member Posts: 210 Member
in Kidney Cancer #1

Hi Everyone,  

I took a long break from all things medical. As much as I could. I was so happy to go off the Chemo med, Cabometyx, that I'd taken for 15 months with great, stable results. Then creatinine levels got too high, so we decided to go off it. Fast forward 4 short months, and now I am in progression already. NOT what we wanted to hear.

So, going back on the Cabo 40's now. If they still raise the creatinine too much, then I'll have to go on Immunotherapy Infusions. Have to get it back in control.

I did miss you guys and wish I'd popped in and posted more. Sorry for not doing that.

My husband said the forums are both a blessing and a curse, and I get what he means. It's so easy to get attached, and then it's hard when someone passes. Hard to hear the difficult stories of suffering, etc.

So, we're ok and all will be ok. Just taking different steps on this new road now. Keep on going, a day at a time. Not giving up, not ever.

Hope you're all doing as well as you can be, also.

Comments

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited September 2019 #2
    Sorry to hear this Joey. Keep

    Sorry to hear this Joey. Keep up with that positive outlook.....very important. Blessings!

  • eug91
    eug91 Member Posts: 471 Member
    edited September 2019 #3
    drat!

    I'm so sorry to hear that, JoeyZ. I'm hoping hard that the Cabo will do it again for you. 

    And you don't have to apologize for enjoying life! The internet forums are totally both a blessing and a curse. If reading about others cheers you up and inspires you, then they're the best. If it's getting you down, then absolutely take a break and get away from it. We're here when you need us! 

    I'll be thinking of you and cheering you on from over here! 

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #4
    Thanks, Sandy and Eug! Great

    Thanks, Sandy and Eug! Great to see you both and hope things are well. Will have to check out some posts!!!

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited September 2019 #5
    Hi Joey.  Sorry to hear about

    Hi Joey.  Sorry to hear about the recent results.  Im sure in no time it will be wiped out again because you know the drug works for you.  Have you tried visiting a nephrologist to consult with regarding how to keep good kidney functioning?   We had one visit and the doctor gave us some dietary advice.   Best wishes.

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #6
    a_oaklee said:

    Hi Joey.  Sorry to hear about

    Hi Joey.  Sorry to hear about the recent results.  Im sure in no time it will be wiped out again because you know the drug works for you.  Have you tried visiting a nephrologist to consult with regarding how to keep good kidney functioning?   We had one visit and the doctor gave us some dietary advice.   Best wishes.

    Yes, I have seen a really

    Yes, I have seen a really good nephrologist several times. I was grateful for his knowledge! It was a big help the first year or so.

    We are hoping for it to just be wiped out again, like before! HOPE!! Thank you and good to see you again, too.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #7
    So sorry to hear this!!

    So sorry to hear this!!

  • APny
    APny Member Posts: 1,995 Member
    #8
    So very sorry, Joey, must be

    So very sorry, Joey, must be so disappointing. But it worked before and will work again, and if you have to switch to immuno therapy that too can hopefully take care of the progression. I also agree about the forum being both a blessing and a curse so I totally understand taking a break from here. Wishing you the very best!

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    #9
    Hope is the word

    and hope is what I hold for you. I'm always glad to see your photo on the forum but really get the difficulty of holding all the different stories and being affected by them. May the "different steps on the new road" go as well as possible. Take care -

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #10
    Oh, Thanks you guys! Yes, we

    Oh, Thanks you guys! Yes, we must never stop hoping. When you give up, it's over. How many times have you seen that in your lifetime? It's true. I'm a fighter. This is but a stumblingblock in the road and I'm going to kick it out of the way!

    So nice to see people are still coming here.

  • Manufred
    Manufred Member Posts: 241 Member
    #11
    Options

    Must have been hard to receive this negative result,but there are ways forward.

    Not sure why you'd be going back to Cabo,when immunotherapy is usually such a gentler and possibly more effective option.  Doesn't affect kindey function near as much.

    Either way, Best wishes,

    Fred

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #12
    Thanks, Fred. I am unaware of

    Thanks, Fred. I am unaware of both those things you stated! I did not know immuno would be gentler or more effective, and that it wouldn't be as hard on kidney!! Hmmm. May have to rethink this. Thank you for this info.

    It pays to come here!! Plus it's nice to see you again, too! 

    I'm a fighter and I won't give up! Thanks again.

  • stub1969
    stub1969 Member Posts: 985 Member
    #13
    Attitude

    Joey--I love that attitude.  We're pulling for good results as you move forward.  Fred--would it be fair to say that all of these drugs affect people differently?   I've heard of cabo SE not being too bad with some and with others it about kills them.  I've heard the same about immuno. 

     

    Wishing only the best for you, Joey!

    Stub 

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #14
    I think in general with

    I think in general with targeted therapy, the newer drugs have fewer side effects.  I dont know about immunotherapy.  Our docs have an attitude that if its working then dont change meds, unless of course it becomes intolerable to the individual.   Ive looked up side effects on the clinical trials to see what they are and the percentages re possibility of having those problems.  However, statistics can be a waste of time because you never know where you will fit into those stats.  My husband doesnt want to know any of this stuff as he thinks its suggestive, including info related to prognosis.  He is happily only knowing the basics.   He is stage 4 since 2012.

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #15
    Cabo is rough but doable. I

    Cabo is rough but doable. I try hard to stay on top of SEs. Sometimes succeed, sometimes fail. I did go read that immuno SEs may not be as difficult. I think you could maybe flip a coin tho'!

    I think going back to Cabo, which did work, is a good idea. Just watch that creatinine. Might get another 15 mo. or more run out of it. Thanks for all the great info, everyone.

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