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46 yr old female, Stage 4 clear cell renal mets to bone…. anyone else, please

JennyG45
Posts: 3
Joined: Jun 2021

Hi. Diagnosed February 26th and on Optivo/Yervoy, 4th infusion scheduled in a couple weeks. Having my first PET scan before the end of the month. Had 8 radiation treatments for pain that made me so ill, I doubt I'll do that again, at least not anywhere near my stomach. I was working a very physical job and was in intense pain while working, so just stopping helped. SSD approved so quickly, that was probably was the first thing that really scared me. Because everyone has heard stories about SSD and also, who can live on that? I'm having a hard time believing this is for real and my world has been shattered, turned upside down. Finally had a palliative care appointment and hopefully they can refer me to counseling. Doctors keep telling me to 'enjoy my days' and 'no one can predict the future'. I'm hoping the PET scan will give me some idea of how the treatment is working and longevity because how In the hell do you plan and sort out anything!?!? I know I'm not the first to say, I never get sick!!!

tgpath1's picture
tgpath1
Posts: 44
Joined: Apr 2021

I was not in a similar situation but I am sorry for what you are going through.  Treatment has come so far that I believe there is always hope...I hope you get some good news!

JennyG45
Posts: 3
Joined: Jun 2021

Thank you for the kind words :) I guess my head is still spinning, so many things to figure out. I did get good news about help with medical costs. That's huge. 

Allochka's picture
Allochka
Posts: 960
Joined: Nov 2014

I am very sorry to hear about your situation. But please do not give up! Many Stage 4 people here, managing it like a chronic disease. Some are even NED after treatments. Doctors words "no one can predict the future" are correct.

Couple of years ago a young woman posted here. She was Stag 4 and in a very serious situation. She posted an update some time ago - she is NED now!

 

Hugs,

Alla

JennyG45
Posts: 3
Joined: Jun 2021

Thank you so much. What is NED?

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Your favorite uncle a/k/a No Evidence of disease.

 

 

 

icemantoo

Deanie0916
Posts: 414
Joined: Nov 2016

Sorry you're going through this. Like others said there are many people on here who are living well with a similar diagnosis. Wish you all the best.

a_oaklee
Posts: 567
Joined: Nov 2013

Hi Jenny.  Sorry to hear about your diagnosis.  Im glad you found this site.  There is also help at Smart patients.   My husband was diagnosed at Stage 4 with mets to various bones in Jan 2012.  He is doing just great, working full time.  He also had radiation treatments but they did not hurt him, and he didnt have any side effects from the radiation.  He did choose cyberknife, which was a one and done approach.  Did you have surgery yet, and where are your bone mets?  You probably need to be on a bone agent to strengthen your bones.  It does get better once you get pain management.  Going to a palliative care doctor, in addition to all the other doctors, was the smartest thing we did.  

Akamur
Posts: 6
Joined: May 2020

A little over a year ago, my husband was in a situation similar to yours. He had an aggressive bone met in his leg that grew from not being able to be seen on X-ray to 11cm in 6 weeks. He had just turned 43 and he had no idea that he also has a large primary tumor in his kidney and several smaller tumors in his lungs. He had surgery on his femur and knee removing the tumor and replacing the femur and knee with metal hardware. He was started on Opdivo/Yervoy combo in late May 2020 and the tumors gradually shrank. He now only has 2 tumors left and they are both metabolically inactive. Opdivo/Yervoy really helped him but he did get many of the immune mediated side effects. His primary oncologist told us at the very beginning that she thought that he probably had several years ahead of him. Since you are a similar age and probably categorized similarly since you seem to have the same treatment plan, you have a possibility of a similar prognosis. 

   We have worked on getting all of our legal, financial, and personal stuff in order to give us peace of mind and take some worry off of us. I would highly recommend this. We have also decided that there really isn't much in life worth fighting about. My husband made a list of what makes him happy and what he feels would be meaningful for him to accomplish and works toward goals he has set for himself. It seems to give him a sense of satisfaction.

linmolek2
Posts: 1
Joined: Jul 2021

Hi Jenny, I'm 55 and a very active,healthy person and also NEVER get sick.  I was diagnosed with stage 4 clear cell kidney cancer in May 2021. It's not in my bones, it's in my adrenal glands, small spots in my lungs and has spread to soft tissue (jaw muscle) in my skull. Had 5 treatments of radiation to that spot in my head and receiving the same drug combo as you. I have no pain or symptoms, never have but I completely understand what you're going through. My world is also shattered and can't believe this is happening. I had genetic testing done in June and tested positive for BARD1 mutation. It's known for causing NNN breast cancer, which I had and beat in 2015, but it also causes "other" cancers. Have you done your genetic testing?

I'm also struggling with planning for my future, how? Should I cash out my IRA, take my bucket list trips? Quit working? 

My doctor won't give me a prognosis, he says no one has an expiration date, so none knows. Frustrating!!

Some stories here give me hope! So I will just keep pushing forward, doing treatment until the end.

Linda

jedtad
Posts: 1
Joined: Aug 2021

I'm curious why the radiation made you sick?  My husband has prostate cancer, he had prostatectomy and was getting ready to do 8 weeks of radiation, when they found a spot on kidney.  Now he is looking at surgey on kidney, then radiation, and continuing to work.  Is this going to be possible?  The Radiology Oncologist said that it will only cause fatigue, which he already has due to the ADT.  He is a teacher, so job is not strenuous, but stressful.  School starts back next week.  

Pattymayo
Posts: 12
Joined: Apr 2021

Jenny, thinking about you. How are you doing?

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