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Three-time renal cell carcinoma survivor

This is my first time sharing my personal account with kidney cancer on this board. I decided to do so in effort to offer some hope for anyone who needs it. I am a three-time renal cell carcinoma survivor--the last two of which were stage 4 (metastatic and distant spread).

 

My first diagnosis was at the age of 25 following the birth of my first child seven years ago. (I have no family history of cancer and do not fall under the normal health risks.) That led to a radical nephrectomy with no treatment afterward due to the tumor’s isolation in the organ. My husband and I were given the green light to try for another child later, following regular, clear CTs, of course.

 

In 2010, after I gave birth to our second child, the cancer returned to the area where the kidney had been removed, wrapping itself around the vena cava artery and spreading to the liver in several spots. Initially, we were told that there was nothing that could be done. However, my oncologist referred me to a surgical team (liver/kidney transplant team) that reviewed my case. They ultimately agreed that they could operate to remove the tumors, rebuilding the vena cava artificially and performing a liver resection (60 percent removed). The surgery was the hardest thing I ever went through. It was 18 hours, left me in a coma for nearly a week and was followed by the most agonizing pain and horrific complications imaginable. It was purely through my faith in God, the amazing support of family and friends and my dogged will to be there for my beautiful children and loving husband that I didn’t give up. I was on Afinitor for one year and had CTs every three months as follow-up care.

 

Nearly two years ago, the cancer, which is an unclassified form of RCC, returned in my spine. I pretty much felt like the earth opened and swallowed me whole. I had a vertebra surgically removed and replaced with concrete, rods and screws. I then underwent three weeks of radiation and was placed on Sutent and Xgeva. I continue to get CTs frequently, the last of which still showed no evidence of disease. I am active and mobile and extremely grateful.

There’s much more that I could post here, but I won’t delve any more into the details of each operation/recovery. I don’t know whether I will live long or if this devastating disease will return. I do know that there are doctors who are miracle workers, researchers who are advancing medications and people out there like you and me who simply won’t give up.

You are in my prayers. God bless you all.

Comments

  • icemantoo
    icemantoo Member Posts: 3,358 **
    So much to live for

    Gracie,

     

    With 2 small children you have so much to live for. Being younger than almost all of us will allow you to overcome obstacles and setbacks that the rest of us never could.

    Prove me right.

     

     

    Icemantoo

  • GracieGirl
    GracieGirl Member Posts: 6
    icemantoo said:

    So much to live for

    Gracie,

     

    With 2 small children you have so much to live for. Being younger than almost all of us will allow you to overcome obstacles and setbacks that the rest of us never could.

    Prove me right.

     

     

    Icemantoo

    Thank You - Long-term metastatic survivors?

    I appreciate that, Icemantoo. 

     

    Just curious if anyone on this board has been cancer-free for a long time following metastatic kidney cancer. If so, your stories would be most encouraging! Smile

  • Frank302
    Frank302 Member Posts: 71

    Thank You - Long-term metastatic survivors?

    I appreciate that, Icemantoo. 

     

    Just curious if anyone on this board has been cancer-free for a long time following metastatic kidney cancer. If so, your stories would be most encouraging! Smile

    Hi Gracie

    I find your story extremely encouraging . Your bravery and attitude are amazing .

    I'm not really sure what long term is but I was given a year and a half to live and I've made it almost three years so it feels pretty long term to me . I was diagnosed  stage four . Following removal of my left kidney I was found to have a tumor in my abdomen and one in my left lung . I was put on Sutent for five months during which time the abdominal tumor grew by leaps and bounds . Side effects of Sutent were extremely hard on me . I went from 220 to 138 pounds and was so weak that my dear wife had to push me around in a wheel chair . I couldn't eat , vomited all day and all night . My hair got thin and what was left of it turned snow white . Even my eyelashes . I passed out a number of times due to dehydration and the skin peeled off my fingers and palms of my hands . My arms and legs were so thin that my elbows and knees looked unnaturaly large and bulging .

    After those  five months I started on a trial for Nivolumab . Two months later my tumors began to shrink and one month after that they had disappeared entirely . The first year on Nivolumab I got ct scans every six weeks and now every twelve weeks and they continue to be clear and show no signs of metastatic cancer .

    Side effects of Nivolumab are nearly non existant for me . A little tiredness , dry skin and an atomic case of dandruff ! I would say that my overall health is very nearly as good as it was before I was diagnosed with cancer . I  am able to do everything I want to do and my life is very sweet and I treasure each and every moment . I am absolutely unable to get in a bad mood . I can hardly believe how fast my health  came back .

    I see quite a number of promising new treatments coming along and it is my hope and prayer that each one of you can find one or a combination that will work for you and return you to good health and allow you to lead long happy lives .

  • GSRon
    GSRon Member Posts: 1,303
    Frank302 said:

    Hi Gracie

    I find your story extremely encouraging . Your bravery and attitude are amazing .

    I'm not really sure what long term is but I was given a year and a half to live and I've made it almost three years so it feels pretty long term to me . I was diagnosed  stage four . Following removal of my left kidney I was found to have a tumor in my abdomen and one in my left lung . I was put on Sutent for five months during which time the abdominal tumor grew by leaps and bounds . Side effects of Sutent were extremely hard on me . I went from 220 to 138 pounds and was so weak that my dear wife had to push me around in a wheel chair . I couldn't eat , vomited all day and all night . My hair got thin and what was left of it turned snow white . Even my eyelashes . I passed out a number of times due to dehydration and the skin peeled off my fingers and palms of my hands . My arms and legs were so thin that my elbows and knees looked unnaturaly large and bulging .

    After those  five months I started on a trial for Nivolumab . Two months later my tumors began to shrink and one month after that they had disappeared entirely . The first year on Nivolumab I got ct scans every six weeks and now every twelve weeks and they continue to be clear and show no signs of metastatic cancer .

    Side effects of Nivolumab are nearly non existant for me . A little tiredness , dry skin and an atomic case of dandruff ! I would say that my overall health is very nearly as good as it was before I was diagnosed with cancer . I  am able to do everything I want to do and my life is very sweet and I treasure each and every moment . I am absolutely unable to get in a bad mood . I can hardly believe how fast my health  came back .

    I see quite a number of promising new treatments coming along and it is my hope and prayer that each one of you can find one or a combination that will work for you and return you to good health and allow you to lead long happy lives .

    Go Frank go.! Then in ten

    Go Frank go.! Then in ten years go back to that doctor and see what he or she has to say. Ron

     

  • Jojo61
    Jojo61 Member Posts: 1,309
    Dear Gracie,
    I am moved by

    Dear Gracie,

    I am moved by your incredible strength. God bless you for all you have endured. I know you will keep fighting. And as you get to know some of the members on the forum you will see that there are lots of long term fighters who have given RCC a run for the money. Whenever you need support, just turn to the members here, and you will get through your battle.

    Hugs,

    Jojo

  • foxhd
    foxhd Member Posts: 3,181
    Jojo61 said:

    Dear Gracie,
    I am moved by

    Dear Gracie,

    I am moved by your incredible strength. God bless you for all you have endured. I know you will keep fighting. And as you get to know some of the members on the forum you will see that there are lots of long term fighters who have given RCC a run for the money. Whenever you need support, just turn to the members here, and you will get through your battle.

    Hugs,

    Jojo

    tough

    Gracie, you are proof of just how tough one can be. You do what you must. And you are prospering. We love the attitude. Welcome. Unfortunately.

  • TillieSOK
    TillieSOK Member Posts: 252
    Gracie, I was feeling pretty

    Gracie, I was feeling pretty crappy today, first after seeing that my CEA is elevated along with a GFR drop, then the urologist found some ..... "Somethings"...... in my urine so they are analyzing (FSH test) whatever they are for possible UT or bladder involvement, and just had yet another CT scan the same day on the nodules in my lungs.  Then you wrote what you find, and I realized how very lucky I am...even if it all turns out to be mets.  Mets are fixable and I thank God every day that I am still here alive and pretty darned close to kicking! Lol.  You are a wise woman for being so young...thank you for sharing.  You certainly helped me. I'm no longer having a pity party!  I'm simply having a PARTY!

  • GracieGirl
    GracieGirl Member Posts: 6
    Frank302 said:

    Hi Gracie

    I find your story extremely encouraging . Your bravery and attitude are amazing .

    I'm not really sure what long term is but I was given a year and a half to live and I've made it almost three years so it feels pretty long term to me . I was diagnosed  stage four . Following removal of my left kidney I was found to have a tumor in my abdomen and one in my left lung . I was put on Sutent for five months during which time the abdominal tumor grew by leaps and bounds . Side effects of Sutent were extremely hard on me . I went from 220 to 138 pounds and was so weak that my dear wife had to push me around in a wheel chair . I couldn't eat , vomited all day and all night . My hair got thin and what was left of it turned snow white . Even my eyelashes . I passed out a number of times due to dehydration and the skin peeled off my fingers and palms of my hands . My arms and legs were so thin that my elbows and knees looked unnaturaly large and bulging .

    After those  five months I started on a trial for Nivolumab . Two months later my tumors began to shrink and one month after that they had disappeared entirely . The first year on Nivolumab I got ct scans every six weeks and now every twelve weeks and they continue to be clear and show no signs of metastatic cancer .

    Side effects of Nivolumab are nearly non existant for me . A little tiredness , dry skin and an atomic case of dandruff ! I would say that my overall health is very nearly as good as it was before I was diagnosed with cancer . I  am able to do everything I want to do and my life is very sweet and I treasure each and every moment . I am absolutely unable to get in a bad mood . I can hardly believe how fast my health  came back .

    I see quite a number of promising new treatments coming along and it is my hope and prayer that each one of you can find one or a combination that will work for you and return you to good health and allow you to lead long happy lives .

    Awesome

    Wow, Frank. That is awesome to hear of your success on Nivolumab! You are proof that the right treatment and attitude makes a world of difference. Wishing you continued health and happiness! 

  • GracieGirl
    GracieGirl Member Posts: 6
    Jojo61 said:

    Dear Gracie,
    I am moved by

    Dear Gracie,

    I am moved by your incredible strength. God bless you for all you have endured. I know you will keep fighting. And as you get to know some of the members on the forum you will see that there are lots of long term fighters who have given RCC a run for the money. Whenever you need support, just turn to the members here, and you will get through your battle.

    Hugs,

    Jojo

    Thanks!
    Thanks, JoJo! That is nice to hear there are long-term fighters on this board who can identify and support each other through these ordeals. Hope you have a great holiday season.
  • GracieGirl
    GracieGirl Member Posts: 6
    foxhd said:

    tough

    Gracie, you are proof of just how tough one can be. You do what you must. And you are prospering. We love the attitude. Welcome. Unfortunately.

    Appreciated

    Thanks for the welcome and kind words, Foxhd. Smile

  • GracieGirl
    GracieGirl Member Posts: 6
    TillieSOK said:

    Gracie, I was feeling pretty

    Gracie, I was feeling pretty crappy today, first after seeing that my CEA is elevated along with a GFR drop, then the urologist found some ..... "Somethings"...... in my urine so they are analyzing (FSH test) whatever they are for possible UT or bladder involvement, and just had yet another CT scan the same day on the nodules in my lungs.  Then you wrote what you find, and I realized how very lucky I am...even if it all turns out to be mets.  Mets are fixable and I thank God every day that I am still here alive and pretty darned close to kicking! Lol.  You are a wise woman for being so young...thank you for sharing.  You certainly helped me. I'm no longer having a pity party!  I'm simply having a PARTY!

    Party:)

    Your response made my day!  

    My thoughts and prayers are with you for the absolute best results possible. Thank you for reading and taking the time to respond.

  • donna_lee
    donna_lee Member Posts: 1,018

    Party:)

    Your response made my day!  

    My thoughts and prayers are with you for the absolute best results possible. Thank you for reading and taking the time to respond.

    What's long term

    Gracie-

    For me, it's been 5 1/2 years since the most recent recurrence. The whole story in in the members directory.

    Short version:  Stage IV, T2N1M1, Clear Cell RCC.  June 2006-removal of R. kidney, L. lobe of liver, set of nodes with 2/11 positive, and for good measure-the gall bladder with a congenitally defective bile duct.  July 2007-removal of one node that was attached to the IVC and Duodenum.  June 2008-removal of a node attached to bifurcation of the aorta where it divides to descend into each leg.

    So far, regular tests...CT's or Chest x-ray/AB-Pelvis US.  A scare with the thyroid - just enlarged but benign nodules.

    Kids are grown, but I'm doing everything I can to be here with my grandkids, who are 7,9,14,and 17.

    Keep on doing the Happy Dance. We're Survivors.

    Donna

  • Eims
    Eims Member Posts: 423
    gracie i don't even know you

    gracie i don't even know you but i have to tell you that i think you are amazing and an inspiration to us all....thank you for sharing your story and it helps us all on our journey....

     

    Eims x