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Looking for RCC Stage IV survivors past 5 years

Gerbils8118
Posts: 1
Joined: Dec 2017

I’m new on here.  My husband was diagnosed with Stage IV RCC July 2016.  Tumor 11 cm, metastasis up IVC into heart and in lung.  Total left nephrectomy, open heart surgery with bypass, and removal of part of the lung.  No treatment while waiting to see if there was recurrence, which showed in April 2017 in both lungs and intestine.  He’s been on Votrient since then.  I know the statistics aren’t great regarding survival of Stage IV past 5 year mark, but I’m looking for people who have known a cancer patients similar to my husband who has passed to find out about survival length and treatments used, and patients who have survived longer than 5 years to learn about their treatments, challenges, and so on.  We have 4 grown children so it’s just the two of us, but I have been an at-home mom and am on disability.  We’re trying to get a very realistic view of what we can expect, good or bad.  Please reach out to me and feel free to be completrly honest.  Thanks for reading my post.

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Welcome to the site and sorry to hear of your husband's plight. 

You are wise to start researching this as kidney cancer treatment is a rapidly changing landscape.  There is a lot of info available on this site. 

My own story so far is 5 years survival after nephrectomy but only 2.5 years since being diagnosed with  Stage 4 mRCC.  You/ll find my story in a number of posts on this site.  Others here have much longer histories. 

My favourite treatment is Nivolumab (search here and the web generally) but it's often horses for courses.

Best of luck and don't ever give up hope.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi Gerbils8118,

I was diagnosed with stage IV mRCC in Nov 2013, but the symptoms started in 2012.  RCC isn't slowing me down.  By God's good grace I'm working, hiking and enjoying life.  I don't see any reason to think I won't make it well past the 5 year mark.  I was on Votrient for 3 years and I've been on Nivolumab (Opdivo) now for ~1 year.  You can click on my profile for the details.

Note: I wouldn't put too much weight on "5 year" stats given the recent and forthcoming treatments for kidney cancer.

I pray for grace and peace for you and your husband.

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

stage 4 in march 2018. First 3-4 years were easy. But not lately. I have no plans to die any time soon. It's pretty easy to fight when you are strong and healthy. Harder as years go by. So much depends upon where mets may pop up. I'd be awesome if I didn't have neurological issues. This  is one fight I wouldn't want to engage in if I wasn't in top shape when they rang the bell for round 1. I can think of no better reason to engage in personal fitness to deal with the impact of cancer. I'd be gone a lonng time ago. I wouldn't want to deal with cancer if I was weak, fat, deconditioned and non competitive.

My doc and I have a deal. He won't pronounce me dead as long as I am still moving.  One thing is for sure. Life will be forever changed after dx.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

i don’t know  how you manage your mental strenght but my God you are one amazing guy

 

Keep going... we all love you

away to the gym...you are right... middle aged and overweight is not good

Annie

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

sorry to hear about your husband

sorry I can’t help in any way but Just to say I understand how difficult it is

 

i can hope you get good results and you get lots of hope from the special people we have here

Annie

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

That are stage 4 only have that one thing in common.  Stage 4 period.  Treatment options, diagnosis, prognosis ( if anybody puts an expiration date on you.. fire them.. ) any and everything about us are different.  We react different to the drug treatments.  

Get an oncologist that deals with RCC a lot.  It is a rarer cancer.  The oncologist has to be on the ball, and up to date.  

Your husband is on Votrient... have you noticed all his hair has turned white?  That is frequently a side effect.  So are gastro intestinal issues.

There are lots of us on Votrient... ask a specific question, and lots will respond on how to handle side effects.

The statstics on life expectancy are all out of date if you googled them. Surgical removal of the cancer used to be the only option for treatment, and cure. Once you were stage 4 ... there was so little option for treatments.  Starting with the approval of targeted therapy, (about 7 years ago? ) imunotherapy, last year, and an increase of research dollars for trials, we all are benefitting and finding that stage 4 is not a death sentence by itself, but the beginning of disease management.  

That's why you need to learn about this cancer.  Get an expert in RCC for treatment. Stay hopeful, and get ready for the roller coaster ride of emotions this cancer will cause.  Another good source of information for you will be SmartPatients.com ... 

Pam

 

donna_lee's picture
donna_lee
Posts: 1014
Joined: Feb 2009

You want Stage IV...what about all the rest of the kidney cancer survivors.

I'm at 11 1/2 years; lots of surgeries, but no Drugs, Yet. Yesterday I had my 3rd CT in 4 months.  Maybe they'll figure out what's in/on my lung.

Best Wishes to all and Happy New Year.

donna_lee

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

stage IV since 2012, that puts me past 5 years now. Treated with Nivolumab and Sutent as a trial starting in 2013. Don't read stats about survival. By nature, 5 year survival stats are 5 years old. Lots of new drugs and treatment options. 

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

On Feb 1, I will be at 5 years.  Been on three different drugs and have gone through radiation therapy -- for most of the last 5 years (two recurrences).  I'm doing quite well, actually.  Good doctors, good diet, maintaining activity levels and the grace of God.  That's the combination that's working for me.  I agree that the stats you see on line are pretty old and much more negative than what they need to be.  We're benefiting from some good, relatively new drugs.

Best wishes.  Be tough.

 

Dutch 

Karen8873
Posts: 35
Joined: Dec 2017

Thank you! As I lay here tossing and turning at 1:30am worrying about my mom , you’ve all given me hope ! Bless you all & May you have a healthy new year! 

rjhillcbytwp
Posts: 11
Joined: Oct 2015

Hi Gerbils8118,

On April 4th, I'll have completed six years of living with Stage IV RCC.   I've never known any other stage than number IV.   I've gone through a Radical Left and Partial Right nephrectomy (one surgery), and since 2012 I've been treated with four different FDA approved drugs (HD-IL2, Sutent, Votrient, and Opdivo).  Now, I'm currently on my second investigational drug.  The first was a glutaminase checkpoint inhibitor.  When that didn't help, we moved to a A2ar checkpoint inhibitor.  

I, like Fox, credit being a runner and always being very active for not only the warning signals, but the inital strength to get this far.  I still work, and enjoy modified versions of my former activities as often as I can.  Opdivo was good enough to me to allow a few months of playing ice hockey.  Not exactly something you'd have wanted to witness, but I had the best time I ever knew as an athlete.  My mets have always been throughout both lungs, and now most recently, my pancreas.  If I didn't know what it felt like to breathe as a runner, I'd likely have no gripes at all.

In any event, like others have said, your relationship with your RCC specialist will be paramount.  You'll learn that most drug side effects are manageable- until they aren't.  Then you move on.  I've learned that once you use a drug type, you can now actually go back and try it again if you've been away from it long enough.  Conventional wisdom is being challenged literally every day.  Stay upbeat and positive.  Not every day will be an "Up-day," but just try to find reasons to put more X's in the "Up-day" column than in the  "other" column.

Best wishes as you move ahead with us.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I'm over 5 years at Stage 3 and over 3 years at Stage 4. No treatments but two surgeries. Get scans every 3 months for the past 3 years.

Nobody can tell you what will happen. Odds don't mean a thing. Better to not pay too much attention to odds. They can be used to make decisions about treatments and follow-ups, but don't use them to decide how long you'll be around. Nobody knows the answer to that question. I go to RCC support groups, and there are quite a few Stage 4 that attend regularly that have been around many years (over 10).

Try not to let it get you down. I know it's hard to do, but work on it. There's hope.

Hugs,

Todd

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