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Racinreggie's picture
Racinreggie
Posts: 16
Joined: Jul 2015

Hi,

   My name is Regina just recently diagnosed with stage4 rrc with mets in lungs. I have been taking Votrient for about 2weeks with a few side affects. Just wondering if it's true about a 6 months survival rate. Scared to death about this disease. I'm 54 and in good health. I have had high blood for many years. Any info would be helpful. I have not had my kidney removed as of yet. I have 2 tumors in right lung and 1in left lung. Has any heard 9f the cyberknife? Please I need some answers. Thanks

icemantoo's picture
icemantoo
Posts: 3220
Joined: Jan 2010

Regina,

 

Sorry to hear that you need our help. We were all scared on that day we first heard those words Kidney cancer. As far as your survival rate a lot depends on the size and details of your tumor and the size of your mets to the lung neither of which you have shared. Nor are sttistics very reliable anyway with all of the new therapies being developed.

On the optomistic side let me tell you about Faye across the street. She was diagnosed with mets to the lung about 21 years ago. From there they discovered the Kidney Cancer and took out her Kidney. She was only 64 then. She regularly walks Ernie every day and takes care of her husband who is recovering from hip surgery.

Hopefully you can follow in Faye's footsteps.

 

Icemantoo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Which makes me 54 also. I was diagnosed May 1st 2013 so I passed the 6 month barriers some time. Its largley a matter of changing your life to live with it.

I've had a nephrectomy, IL2 (THIS MAY BE COMING YOUR YOUR WAY - DONT PANIC) Votrient, Inlyta +13 different pills for side effect.

We're with you mate. No advice but plenty of empathy. 

1 and only piece of advice: MOIST TOWELETTES!

Racinreggie's picture
Racinreggie
Posts: 16
Joined: Jul 2015

The mets in my lungs are anywhere from 1.3 cm and 2.5 cm. I have not had anymore scans since I started the meds. The one one my right kibdney is about 4 cm.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Here's a question. If your life is going to have ltd longevity do you want to spent whats left of it thinking about life or death? This choice is in your hands 

jason.2835
Posts: 337
Joined: Nov 2014

It's crazy that your kidney tumor is only 4 cm... usually that is considered very small for you to already have advanced mets in the lungs.  Make sure you get enough opinions and talk to your doctors until you are satisfied with the treatment plan... Almost everything I've read starts with the removal of the primary tumor ASAP.  But if you don't already have a plan, then it might be a good idea to seek other opinions if you haven't yet done so.  Having a doctor who believes that the plan will work is worth their weight in gold.  

Next, stop reading online search results... most of the ACS statistics are very outdated.  There have been many new treatments that have become available just in the last few years that are showing good results.  Keep us posted.

- Jay 

Racinreggie's picture
Racinreggie
Posts: 16
Joined: Jul 2015

Thanks Jay, had a lung biopsy done in June. Thanks alot for the info. I'm on Votrient right now with just a few side effects. I hope it works. Having blood work done the 3 rd and bone and brain scans done on the 7th with a heart echo. 

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

Regina,

I'm not a big expert on Stage 4, but everyone on these boards who has Stage 4 has lived waaaay longer than 6 months. 

It is a sad day today, 2 wonderful people with Stage 4 have passed.... But others are here and living their lives. You have a hard fight ahead of you, and it will be much longer than 6 months.

stay here, ir is a marvelous place for info and, most important, emotional support. I'm sorry it is Stage 4, but I am

 sure there is  no 6 month expiry date for you!

Racinreggie's picture
Racinreggie
Posts: 16
Joined: Jul 2015

Thanks so much for your support. I love this site. Regina

JoanneNH
Posts: 115
Joined: Sep 2013

Regina:  Are the doctors planning to take out the kidney tumor? 

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Oh dear, Regina~ glad you found us! Sorry for what you are going through. So of course you are scared! BUT many others here and on SmartPatients.com are still with us and can help you perhaps with some of your questions. It amazes me how much they can do now!

In the meantime, I'll send you a healing hug hoping you'll just LIVE for today and not worry about what you cannot control. Do you know the Serenity prayer? "(God) Grant me the serenity to accept the things I cannot change, to change the things I can and the wisdom to know the difference. Whenever I am worried or scared I keep saying that over and over till my anxiety is lifted!

We'll walk this journey along side you hon, if you want us to.

Gentle Hugs, Jan

pvob
Posts: 7
Joined: Apr 2011

Hi there ive been watching this site for a few years now.

i am stage 4 also from januarie 2011 they took out my kidney tumor 12.5 cm together with my adrenal gland.

in 2013 they took out an met. out of my lung it was 0.8 mm and they saw that the adrenalglandon my other kidney had grown to almost 6cm and they saw a met on my pancreas.

i took a trail wich is 8 weeks votrient and then 8 weeks everolimus.

after 3 weeks of 800mg votrient i had a call saying stop with the votrient becausse of my liver could not handle it i stopt directly but had a ct scan the tumors both had shrunk for 50 percent.

then i went on everolimus for 8 weeks it stayd stable and i said can i go on votrient and ask if i could stay on 400mg for 8 weeks. it worked the liver could take it.

so now i am still on 8 weeks on votrient then 8 weeks on everolimus.

if it doessent work anymore they try something else perhaps sutent.

also they talke about taking the mets out .

since 2005 there r new meds.

you see i am stil alive after more then six months.

by the way i am living in the netherlands and i am 53.

 

 

Peter

Largeal
Posts: 3
Joined: Aug 2015

Hi Regina. Let me give yoy my history to allay your fears. I was diagnosed with RCC 131/2 years ago. I had a nephrectomy at the beginning. Three and ahalf years later, some "mets" were discovered in my lungs. In the next two years I had three lung resections,two left lung and one in the right lung. My disease was stable for about nine years with very slow growth. I would always be nervous before my CT scans and for a few days after. In spite of the cancer, I lived a fairly good life. I traveled to Europe and tried to go through my bucket list. I do not know if your cancer is like mine but I want you to know there are several great tretments out there. There are many more in the pipeline. I just started a trial (stage three) at Sloan Kettering. I hope it will be successful The point is, I understand your trepidation. The best thing to do would be to stay hopeful. We live in a time when science is working hard for us. Live life as fully as possible. This is not a definite death sentence. I will keep you in my thoughts and prayers. Good luck!!

Allen

Racinreggie's picture
Racinreggie
Posts: 16
Joined: Jul 2015

Thanks alot everyone. I leave Monday to go to the cancer center of America in Chicago. I'm getting a second a option. Thanks guys. My scans I had on the 7th came out great.

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