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Covey_748
Covey_748 Member Posts: 7

I have been looking at these forums for a while now and finally decided to join.  A little background on how I got here.  Back in June of 2014 while at work I started to feel pain in my right flank area like I was having a kidney stone.  I have had kidney stones in the past so I did not think much about it until I started urinating blood.  The amount of blood was varied and I by the end of the day it was not even really noticeable so I thouht I must have passed a jagged stone.  It was not until a two days later that the blood was really intense again.  I went to the ER and they did a CT scan, that is when I found out about the 9cm tumor on my right kidney.  I was set up with a urologist and the multiple CT scans, MRI's, renal scan, took place.  I had radical open nephrectomy on August 14,2014.  The day before my surgery I had an embolization done to cut blood supply off to the kidney to make the surgery a little easier. The final report had the following Clear Cell Renal Cell Carcinoma.  Tumor size 10.7x8x6.5 cm, Histologic Grade 3, Pathologic Stage T4Nx, extends into renal pelvis and renal vein.  My follow up CT scans about a month or two after surgery showed 1 small sub centimeter lung nodule to right lung.  Dr. wanted to watch it for growth.  At the beginning of December 2014 the lung nodule had increased to only 7mm but my oncologist knowing that the nodule had increased with each scan set me up with a thoracic surgeon to go in and take the nodule out.  On January 14th, 2015 I had surgery to remove the lung nodule.  The report came back as Clear Cell Renal Cell Carcinoma.  This nodule was the only thing that showed up and I have been on Votrient 800mg since March.  I have had the following side effects with Votrient... Diarrhea, fatigue, white hair.  Now that I have shared my story I wanted to say thank you to all of you who have shared your stories of strength and hope.  I just wanted to share and I do apologize for making this so long.

Comments

  • sblairc
    sblairc Member Posts: 585 Member
    Welcome!

    WELCOME! 

    This is a great place for sharing all your stories, long or short. 

  • APny
    APny Member Posts: 1,995 Member
    sblairc said:

    Welcome!

    WELCOME! 

    This is a great place for sharing all your stories, long or short. 

    It is a great place and no

    It is a great place and no story is too long. Hope that one nodule they removed from your lung was the end of it. It's amazing how many of us are diagnosed after passing a lot of blood. That's how mine was found also, and I too dismissed it as perhaps a stone or UTI. Unfortunately the CT showed otherwise but at least it was found and removed. Best of luck to you with the Votrient and hope it continues doing its job.

  • Covey_748
    Covey_748 Member Posts: 7
    sblairc said:

    Welcome!

    WELCOME! 

    This is a great place for sharing all your stories, long or short. 

    Thank you very much, as with

    Thank you very much, as with a lot of people  wish we all did not have to meet here!

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Covey_748 said:

    Thank you very much, as with

    Thank you very much, as with a lot of people  wish we all did not have to meet here!

    First of all, I am glad you

    First of all, I am glad you decided to join. There are some special folks here who will informa nd support you for sure!

    But sorry for all you have been through .. yet.. sounds hopeful that you are in good hands and continue to be NED=No evidence of Disease. Did I get that right?

    Look up JoJo as she is stage 3 and started a thread for just that stage. Did you see that?

    Keep us informed as to how you are doing.

    Sending you healing hugs and serenity!

    Warmly, Jan

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Covey_748 said:

    Thank you very much, as with

    Thank you very much, as with a lot of people  wish we all did not have to meet here!

    Welcome to our forum! And

    Welcome to our forum! And thank you for sharing your story. We all learn from each other's stories.

    I hope this nodule was the last for you!

    Hugs

    Jojo

    EDIT: I just read Jan's message. I cannot accept the credit of starting the stage 3/4 thread (I believe it was Foxhd?). But it is there and a good place to post/read!

  • todd121
    todd121 Member Posts: 1,448 Member
    Welcome

    Sorry you have to be here. Glad you posted.

    I'm also Stage 4, but my second tumor was in my adrenal gland 2 years after my primary.

    I'm surprised you are on votrient with NED (no other tumors). Do you have other tumors? I would have thought they would stop the votrient at that point. I haven't heard it's approved to prevent tumors. Or is this a drug trial you're on to try it out?

    My first tumor was found the same way yours was.

    Hope you have no more tumors.

    Todd

  • Talmidah
    Talmidah Member Posts: 25
    Fellow newbie

    I too just joined the forum.  My situation is different in that I have not had surgery yet so don't have a stage.  Your story is valuable no matter how long it is because it is your story.  I wish you the best.

  • brea588
    brea588 Member Posts: 240
    feel free to post

    You write as much as you want too.  We will all be here to help you with any thing that we can.  My thoughts and prayers will be with you.