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Stage 4/Renal Cell Carcinoma

Gary O's picture
Gary O
Posts: 3
Joined: Feb 2020

On January 23rd was diagnosed with Stage 4 Metistatic Renal Cell Carcinoma. It re occurred from after a 2013 partial Nephrectomy of my left kidney. I have had an initial meeting with an oncologist and she has ordered a MRI and referred me to a specialist for Clinical Trial referral. My cancer is Clear Cell and it does not respond to chemo. My oncologists indicated that drugs, given my heart condition may be too harsh. She indicated I have a 40 month prognosis.

My wife and I have been reading everything we can regarding options. I am 66 years old and still working. At this point I am confused and fearful of next steps.

 

GC 

 

spiny_norman's picture
spiny_norman
Posts: 3
Joined: Dec 2019

Trying to reply to your post but not seing a reply button, hope you see this.

Is your diagnosing oncologist an RCC specialist?  I don't know the nature of your heart condition and there's not a lot of description regarding your state of metastasis, but 40 months prognosis seems really harsh in the current era.  I was diagnosed stage 4 in October, and the story I got from my onc was "incurable but managable", and he was strongly disinclined to discuss time.  He compared it to diabetes - can't be cured but can be managed sometimes indefinately. 

Your oncologist is correct that RCC does not respond to normal chemo, but there are so many potential treatments in the immunotherapy age that we're in that it's almost too confusing for the oncologists because there are too many choices.  All with varying levels of side effects and harshness.  Decent chance there's a possibility for you to try.  

RCC is a funky cancer - it's almost as if each patient is an experiment with one subject.  Critical that you get to someone that specializes in RCC.  With what you've described, it's too soon for you to give up hope........

 

a_oaklee
Posts: 523
Joined: Nov 2013

Hi Gary.  So sorry you had a recurrence.  Where is your recurrence?

Dont panic.  My husband was diagnosed as Stage 4 in 2012.  He was 65.  He is now 73 and really enjoys working full time.  There are so many more choices for treatment now than there were just a few years ago.  Please don't read anything old on the Internet.  My husband takes a pill twice a day and doesn't have bad side effects.   I can tell you that many doctors don't know very much about RCC.  Perhaps you have a major medical center near you with Urooncologists on staff.

spiny_norman's picture
spiny_norman
Posts: 3
Joined: Dec 2019

I should have said what a_oaklee said so I'll say it now.  If it's about RCC on the internet and much it's more than a year or two old, ignore it.  Particularly the survival stats for stage 4 RCC.  Don't even look at them, and if you already have, exorcise them from your brain, because they are completely meaningless today.

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

Gary;

I'm another person who is living with Stage 4 RCC.  My surgeon gave me a prognosis of 3 years back in 2013.  So, don't get too discouraged.  Get yourself a good oncologist -- one who knows that people ARE able to live a good number of years with Stage 4 disease.  You are living in a good time as to the types of treatments which are available to treat our types of cancer.  

 

Best of wishes for you.

 

Dutch

eug91's picture
eug91
Posts: 254
Joined: Jan 2019

Sorry you had to join us, but this is a great forum. If you have questions or concerns or just need to vent, we're here for you. 

As the others have noted, you have many options available to you and reason to be optimistic. Communicate with your doctors. There are many folks here who have been Stage 4 for years. 

Also, if you haven't already, consider signing up at smartpatients.com - another great forum where you'll find many Stage 4 RCC folks.

Don't lose hope. You can do this. 

 

Murcedes's picture
Murcedes
Posts: 1
Joined: May 2020

Gary,

I am a patient at City ofnHope with the same cancer dignosis, however my doctor had tried something new on me and my cancer is now clearing from my lungs. I am taking Anixib ( Chemo treatment) and Ketruda ( Treatnent that goes through my veins every three weeks) She did not know if it would work becausr after they took my right kidney in Dec the cancer spread to my lungs in January . I started the treatment end of January 2020. Now my cancer is dissolving by Gods Grace! My Doctors name is Tanya Dorff / City of Hope in Durate Ca. Maybe you can reach out for an appointment. I Live in Las Vegas but travel every three weeks for treatment . Call them this may be an alternative for you . Praying all the best for you!! Don't give up!!

 

 

skateabit's picture
skateabit
Posts: 3
Joined: Jun 2020

I am on the keytruda & Axitinib treatment plan too after they removed my left kidney last year. It has been successful in putting me into remission after 7 months and the side effects for me are minimal and tolerable. Are you in remission and have you considered stopping the treatment?

Biner
Posts: 52
Joined: Apr 2020

40 months it is the rediculous prognosis, I saw a lot people with st 4 they live 10 and more years, and living full life maybe you need second opinion with RCC specialist

What stage did they give in 2013?

Bryn1108's picture
Bryn1108
Posts: 91
Joined: Jul 2017

Can I have your email address and email you something worth checking out.  Its something I have been doing for 2 months now. And two local people have done this and are NED. My email address is brenda.venuti@yahoo.com ,

I will send info to anyone fighting this battle.  

a_oaklee
Posts: 523
Joined: Nov 2013

Bryn.  Thanks for your offer.  Please feel free to contact me privately through this site.  If you know something that will benefit all of us, please start a new thread for everyone interested to read.  Thanks again.

donna_lee's picture
donna_lee
Posts: 961
Joined: Feb 2009

2006-Stage 4, with mets to liver and set of nodes. 2007-recurrence in a node, 2008-recurrence in another node.  All removed surgically each year.  NED since then.  As I asked, is it operable?

I hate those proposed end dates.  Fight it.

Hugs

donna_lee

Bryn1108's picture
Bryn1108
Posts: 91
Joined: Jul 2017

Hi, I'm not savvy to using this site. I would love to contact you privately.  Please tell me what to do 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Hi Bryn. Just click on the user name, then it'll take you to their profile where there's the option to "contact this user." That will send a private message.

Bryn1108's picture
Bryn1108
Posts: 91
Joined: Jul 2017

Thank you so much 

a_oaklee
Posts: 523
Joined: Nov 2013

Sorry it took me awhile to respond.  Apny thanks.

I should tell you Bryn that my husband is successfully conquering this disease.  He isnt going to try anything else when what he is doing works so well.  Even holistic natural stuff hes not interested.  OTC products he has to ask his oncologist if its ok.  Just letting you know.  When you are stage 4 treatment is usually only changed if you have 20% growth, new sites, or you cant tolerate what the current treatment is.

Bryn1108's picture
Bryn1108
Posts: 91
Joined: Jul 2017

Oh a_oaklee,  I did not want to tell your husband what to do,  for you I wanted to ask for all the information you could give me about your husband success.  My kidney cancer also metastasis to my spine and I go next Monday to get new scans and I'm thinking I will be told what my options will be.  I'm having lots of pain.  My radiation was last September and I have multiple pathological fractures.   I was wanting your ideas.  I was just going to share with others about fenbendazole- dog dewormer.   Joe Tippens gives his testimony.  Thank you so much 

a_oaklee
Posts: 523
Joined: Nov 2013

Please feel free to contact me via email.  Happy to answer your questions.  You can also start a new discussion about whatever you want.  Good luck with your appointment.

kidneycancersurvivor
Posts: 4
Joined: Jul 2020

Get a second opinion....soon.  Make sure your Oncologist is a RCC expert.  True experts in this field are pretty hard to locate, here's some I'm familiar with:

Dr. Rini, Vanderbuilt

Dr. Hammer UT, Southwest

Dr. Vaishampayan, University of Michigan

I was stage 4 RCC clear cell, and am now in Complete Response after a 4 year journey with the disease.  I've personally used two of the 3 doctors listed.  All three are state of the art Kidney experts.

Depending on the location and surrounding structures, Sterotactic Body Radiation (SBRT) may be an option if drugs are too harsh for you.  I had it done to 2 lesions with excellent response.  The rest resolved using Votrient. 

Mine was indolent (slow growth), yours may not be, so my course of treatment might be quite different from what you need, but Votrient is considered to have the least side effects of the targeted drugs.

 

My best wishes for your journey with this disease.  Hope I've helped.  Stay positive!

skateabit's picture
skateabit
Posts: 3
Joined: Jun 2020

I was diagnosed with stage 4 kidney cancer in March 2019; a large tumor on my left kdiney along with nodules in both lungs and some lymph glands. I had my left kidney removed and started on a new treatment plan of  daily pills of axitinib(Inlyta) and infusions of pembrolizumab(keytruda) every 3 weeks. After about 7 months I was declared in remission with no signs of nodules in my lungs or lymph glands. I have continued on the treatment plan  and subsequent CT scans show I am still in remission.

I am considering discontinuing the treatments so the side effects stop. Has anyone else had the same chemo/immunotherapy plan as me and gone off it after being in remissions? How are you doing? What about other chemo/immunotherapy plans; has anyone gone in remission and then stopped their treatments? 

eug91's picture
eug91
Posts: 254
Joined: Jan 2019

Great news on the remission, skateabit! If you haven't already, you should ask in the forum at smartpatients.com - there are definitely others on axi-pembro who could advise you. 

a_oaklee
Posts: 523
Joined: Nov 2013

Congrats on remission.  My husband was stage 4 in 2012.  He has no evidence of disease since 2013.  He has taken Inlyta since 2013.  He doesnt plan on stopping.  3 different oncologists recommend not stopping.  Psychologically its better for him to just keep on doing what works.  He doesnt have any side effects.  He takes 7 mg two times a day.  10 mg was too much.  Maybe your dosage could be lowered.  And to answer your question, there are people who choose not to do treatment when there is no evidence of disease.  I think that is more common, than what my husband is doing.  Most people do have some unpleasant side effects, and he doesnt.

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