Cancer returned

Joe_fh Member Posts: 53 Member
edited June 2023 in Kidney Cancer #1

I was looking in the messages here for people I knew back when I first got my diagnosis back in 2012. I don't see a lot of familiar names. Not sure if that is a good sign or a bad sign.

In 2012 I had my left kidney removed because of a massive tumor. At the time of of removal they told me that I was stage 3A. It was clear cell carcinoma.

For many years, test after test found no evidence of the disease. It effectively had gone into remission for nearly 9 years. That ended in March of 2021 when they detected tumors in many places. Behind the right kidney, Lung lobe, a small spot on the liver and the most painful one in the lower left leg bones.

I am here to tell you that the cancer did a heck of a number on left leg bones. In October of 2021 I was just walking in my living room and my lower left leg bones basically shattered and down I went. It was only then that we knew how bad the cancer come back was. They reconstructed the leg surgically and I can walk, but barely. I have to put a lot of weight on my cane. It is very painful, I have lived in pain every day, every minute since the shatter.

I am now classified as Stage 4 advanced kidney cancer. The treatments have been going well. We did radiation on the leg and other spots. They put me on OPDIVO which seems to be a miracle drug. Most cancer locations have now stopped growing and the Oncologist says the tumors are mostly dead. All but that lower left leg. I am still in agony and they can still detect lingering cancer in those bones, but they too have not spread.

I have been told that I will stay on OPDIVO ongoing as long as it continues to work and I keep tolerating it. However they have also told me that this cancer can't be cured, best we can do is keep it under control. But I do hate being dependent on the OPDIVO as well as the Oxycodone for the unrelenting pain.

I don't know if anyone remembers me in here way back when, but I figured a progress report was in order.

Be well folks,



  • eug91
    eug91 Member Posts: 471 Member

    I'm sorry, Joe, that's awful that it came back like that. But thank goodness for the Opdivo - nothing new nothing grew is great news. I think of the classic words of FoxHD - we're living with cancer, not dying from it.

    As for the old familiar names on the board, I haven't been around that long, but most of us try to drop in as we can. It's a balancing act between keeping up with cancer here, and living life without thinking about it all the time.

    Hoping you get relief from the pain and regain your strength and heal up soon!

  • Deanie0916
    Deanie0916 Member Posts: 616 Member

    Hi Joe, I joined in 2016. I also had a large tumor stage 3. I was NED until 2021 with tumors on my rt kidney, lungs and pancreas. I'm also on opdivo. First opdivo with yervoy now opdivo only since January. First scans showed some tumor shrinkage. However, I'm in the hospital with diabetes type stuff happening. Just watch for diabetes ses closely! All the best to you.

  • Joe_fh
    Joe_fh Member Posts: 53 Member

    Thanks folks, I consider myself lucky as I seem to have a great cancer team. They have stopped the growth and we seems to be in somewhat of a holding stage.

    @eug91 I like FoxHD's outlook on that as you mentioned. We're living with Cancer, not dying from cancer. I think that is a good outlook to have especially when you get the prognosis that it can't be cured but it can be controlled which is where I seem to be.

    @Deanie0916 - Got to watch that diabetes. That is a complication people such as ourselves could do without. I also have type 2 diabetes, but mine is well controlled and I hover between readings of pre-diabetes and diabetes numbers. My average stick is usually between 115 and 135 sometimes much less. What helped me the most in that respect is losing weight - quite a bit of weight. I keep mine under control with just 5mg of Glipizide 2x a day.

  • donna_lee
    donna_lee Member Posts: 1,042 Member

    Hello-You came on the board after me, even though I didn't join in 2006 with my Dx and first surgery. So sorry to hear it has returned. I was a friend of Fox and was able to call him the day before he died. Even then, he was trying to make lemonade out of the lemons thrown at him.

    A dear friend is dealing with multiple myeloma, had stem cells removed and then wanted to give up. She made up her mind to get up and start walking, as the Dr. had instructed, and will go to OHSU in July for her transplant. Hope she kicks "A".

    Take your treatments and work hard to deal with this. You have a cheering crowd out here listening.


  • Joe_fh
    Joe_fh Member Posts: 53 Member
    edited June 2023 #6

    Fox passed? Now I am depressed. He was always so positive and reassuring.