Presentation, my dad cancer is back... again

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kankamuso
kankamuso Member Posts: 14
edited November 2017 in Kidney Cancer #1

Hi,

Let this message serve as a presentation and to apologize if my english is not so good.

My father was diagnosed with a RCC back in 2012. It seemed to be confined to one kidney and so it was removed. There was one still functioning well. This year, almost 5 later, two new small spots were detected on the other kidney. It was a big shock that time but a new conservative surgery was performed and renal function was still perfoming well. But now again, in the upper part of the remaining kidney a new spot (17mm) has apppeared. We have never been told of them as metastasis but I suppose it is safe to call them so, is it?. I was thinking that perhaps this was a problem with his kidneys "design" and he was prone to developing RCC (he is 70 now). But the world has fallen to me when I have been reading about statistics, that this is a metastasis and survival odds are very low, that even in the case this has not spread outside the kidney (which we don't really now as no PET has been performed) dialysis is not "for ever". I am lost, need your suggestions, support, stories, testimonials. I am a very anxious person and I am suffering a lot. Next monday we will visit his doctor with the CT results and I am really bad. Don't want to lose him, don't want to see him/my mother suffer (they are extremely loving of each other).

I have also read that new therapies just help prolong life a bit. My father is quite strong and is concious of all possible outcomings and seems prepared to the worst, but everybody wants to live a longer and healthy life. I am prepared to do everything for him even donating a kidney (don't know if moral objections can be made as a cancer patient, in the public system there are limits of this type for anonymous donations but don't know about person-to-person voluntary donations).

Let's see how this evolve.

Thanks for having this support forum and my best whishes to all of you.

Hugs

Comments

  • APny
    APny Member Posts: 1,995 Member
    #2
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    I am so sorry that your

    I am so sorry that your father and family are facing this again. It is possible that it's not metastasis. While uncommon, cancer in both kidneys can and does occur. I hope the doctors have a good plan in place for your father. My heart goes out to you but try not to panic. There are all sorts of treatment options and even transplant if that becomes necessary. Please keep us informed!

  • kankamuso
    kankamuso Member Posts: 14
    #3
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    Thanks a lot APny, at least

    Thanks a lot APny, at least his blood markers set him in the "good prognosis" group that should survive the longest which is a good starting point. And I still believe that my anguish is times bigger than his... Let's see what doctors say on Monday appointment.

    Many, many thanks for your support. Loneliness is one of the worst things in this moment. 

  • hardo718
    hardo718 Member Posts: 853 Member
    #4
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    Welcome Kankamuso

    I'm so sorry about all you are going through.  That's the last thing any of us wants.  I apologize I have no words of wisdom to offer, but please know I will keep you & your family in my prayers.

    Donna~

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #5
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    So sorry to hear of this. It

    So sorry to hear of this. It is awful to have to face again I am sure. The good thing is that these are small and over the years treatments seem to be improving!!! I hope your dad gets the best care possible and that you all have peace about this.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited November 2017 #6
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    First of all, your English

    First of all, your English/writing is just fine. Had no problem following your post. 

    Has your father received a 2nd or 3rd opinion on treatment?

    Also you may want to research a new kind of treatment where they take the DNA of your specific cancer and they design

    the treatment according to the results. It is explained more easily by going to Tonyaslaw.org

    Tonya's husband JJ Petchel is my nephew. 

    Let us know what you find out, but again, get more opinions perhaps, especially from a teaching hospital. Maybe you have and I just don't know it. Also try SmartPatients.com for more information too. 

    We'll be here to support YOU and your father all the way!

    Sending you HOPE, HEALING and DETERMINATION!!

     

    Hugs, Jan

  • Manufred
    Manufred Member Posts: 241 Member
    #7
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    Combination Immunotherapy might help

    Kankamuso,

    A tough prognosis, but have a look at a recent trial publication, Checkmate 214, which was presented at ESMO in September this year.  It used Ipilimubab in combination with Nivolumab for three months, and after that just Nivolumab by itself.

    I was one of the patients in the trial, having first had a kidney removed in 2012 and then having the metastasis diagnosed in April 2015.  My tumours have all disappeared, although only about 10% of the trial participants had such a good outcome.  Nevertheless the treatment was much more succesful than the best available at the time (sunitinib), which inhibits tumour growth but does not make them go away.

    These days there are more options for people in your father's condition, so do your research or get your oncologist to look into this.

    Best of luck to both of you,

    Fred

  • kankamuso
    kankamuso Member Posts: 14
    #8
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    hardo718 said:

    Welcome Kankamuso

    I'm so sorry about all you are going through.  That's the last thing any of us wants.  I apologize I have no words of wisdom to offer, but please know I will keep you & your family in my prayers.

    Donna~

    Thanks hardo, your supporting

    Thanks hardo, your supporting words make a difference to me. At least I am not alone on this. New perspectives arise and some peace of mind appears. 

    Thanks a lot !

  • kankamuso
    kankamuso Member Posts: 14
    #9
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    AnnissaP said:

    So sorry to hear of this. It

    So sorry to hear of this. It is awful to have to face again I am sure. The good thing is that these are small and over the years treatments seem to be improving!!! I hope your dad gets the best care possible and that you all have peace about this.

    I know it is difficult and

    I know it is difficult and statistics are against us but I won't stop fighting and will never lose my faith. Miracles and exceptions for exist. And my love for him is too big to let it go without trying everything.

     

    Thanks

  • kankamuso
    kankamuso Member Posts: 14
    #10
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    Jan4you said:

    First of all, your English

    First of all, your English/writing is just fine. Had no problem following your post. 

    Has your father received a 2nd or 3rd opinion on treatment?

    Also you may want to research a new kind of treatment where they take the DNA of your specific cancer and they design

    the treatment according to the results. It is explained more easily by going to Tonyaslaw.org

    Tonya's husband JJ Petchel is my nephew. 

    Let us know what you find out, but again, get more opinions perhaps, especially from a teaching hospital. Maybe you have and I just don't know it. Also try SmartPatients.com for more information too. 

    We'll be here to support YOU and your father all the way!

    Sending you HOPE, HEALING and DETERMINATION!!

     

    Hugs, Jan

    Thanks a lot Jan.

    Thanks a lot Jan. Reconforting words are important to me but testimonials and unexplored options are the most encouraging to me. I will take all of them into consideration. I have worked for our national Biotechnology Center so I have good contacts and all of this can be achieved so this information about tailored treatments is extremely important to me. 

     

    Determination is the word!

  • kankamuso
    kankamuso Member Posts: 14
    #11
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    Manufred said:

    Combination Immunotherapy might help

    Kankamuso,

    A tough prognosis, but have a look at a recent trial publication, Checkmate 214, which was presented at ESMO in September this year.  It used Ipilimubab in combination with Nivolumab for three months, and after that just Nivolumab by itself.

    I was one of the patients in the trial, having first had a kidney removed in 2012 and then having the metastasis diagnosed in April 2015.  My tumours have all disappeared, although only about 10% of the trial participants had such a good outcome.  Nevertheless the treatment was much more succesful than the best available at the time (sunitinib), which inhibits tumour growth but does not make them go away.

    These days there are more options for people in your father's condition, so do your research or get your oncologist to look into this.

    Best of luck to both of you,

    Fred

    Another encouraging and

    Another encouraging and different option for treatment. It is true that finding a good oncologist is one of the best things. Well-intentioned ones do exist but knowledge and implication is the key. I will find the best one. Thanks 

    You all are great and deserve the best. My best wishes for all of you. 

     

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #12
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    So sorry you are going through this

    May I ask

    which country you are in

    what was the size of the first tumour

    There are still options of new treatments and dialysis 

    this will be tough for your family but I pray you find a way

     

  • kankamuso
    kankamuso Member Posts: 14
    #13
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    Wehavenotimeatall said:

    So sorry you are going through this

    May I ask

    which country you are in

    what was the size of the first tumour

    There are still options of new treatments and dialysis 

    this will be tough for your family but I pray you find a way

     

    Hi, Wehavenotimeatall

    Hi, Wehavenotimeatall (terrifying nick by the way),

    I am from Spain. My dad's first tumour was a 9 cms one (a big one I am afraid) and was found by chance (no pain, no strange blood tests results, nothing) on the left kidney. Total nephrectomy then and partial this may for two small ones located on the bottom of the right kidney.

    Visiting doctor this evening to see how things will follow. Let you know.

    Bests,

  • kankamuso
    kankamuso Member Posts: 14
    edited November 2017 #14
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    News: we will have a partial

    News: we will have a partial nephrectomy. And to add, the first tumour was 6 cms , not 9. In the second operation, one of them (there were two small masses) was T3. The doctor does not think this is a nethastasis because it only appears in the kidney so it is probably a "bad kidney". So this is the next step now. One at a time.

    Thanks a lot for your support. My parents are fine, both physically and emotionally so everything is ok.

    Cheers!

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #15
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    Good news. Here's to more of

    Good news. Here's to more of it going forward!!

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