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mRCC stage IV with brain mets

RBosdet
Posts: 1
Joined: Sep 2015

Hello, this is my first post here.  I have stage IV mRCC kidney cancer with mets in both lungs, one shoulder, on an aorta lymph node and in my brain.

I was treated with pazopanib for about 8 months with good response and have recently switched to Axitinib as a second, and final, line.  

I was told by my oncologist that it will most likely be odoema around the brain mets that will get me in the end and that I could anything from a week's notice of a sharp decline right down to a catastrophic stroke.  I would like to know something about the probabilities of these scenarios to help me with my final plans and also preparing family and friends.

Does anyone have any, obviously anecdotal, information about the relative likelihoods of either extreme?

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

That all seems needlesly negative. I dont see how the doc could know that stuff and he sounds like a bad doc. I'm stage four, grade four. Have been since Mat 2013. Nearly died of treatment related side effects in the winter of 2013, anti biotic resistant illness  in 2014 and pneumonia last week. You will live.

I suspect you will live longer with a better doctor.

a_oaklee
Posts: 439
Joined: Nov 2013

Hi RB.   Welcome to CSN.  I'm very sorry that you have to be here.  It am a caregiver wife, and my husband has stage 4 RCC.  

You have asked a somewhat difficult question, that generally makes people uncomfortable to talk about death and dying.  I have been familiar with some people who have died that had RCC.   I don't think there is a set amount of time that is common.   I would say the most common final diagnosis is renal failure.  

I believe that if you wish to know more you should join Smart Patients web site.  There are many Stage 4 patients on that site, along with caregivers very willing to help you.

I have done my best to answer what you have specifically asked.  now I want to say to you that I hope you have gotten a second opinion from another oncologist, and that you are seeing a renal cancer specialist.  There are more medications that you can take, and also treatment options for your mets, including radiation therapy, and surgical intervention, among others.  

People are living years and years with what you have described, and I wish the best for you.

Annie

mrou50
Posts: 389
Joined: Mar 2013

I know it is hard but focus on the now not on the what could happen.  I too have stage IV and my ONC says eventually things will spread.  But we don't know how long eventually is so I am going to embrace waking up every morning even those mornings that I am in the bathroom all the time because of the treatments.  If you spend all your time worrying about things that might happen, you just may forget to live the life you have now. 

 

Mark

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

     I was diagnosed in August of 2011, when I had my right kidney removed.  Then about 16 months later the lower portion of my right lung removed, and about a year after that my first brain tumor removed and then 12 months later my second brain tumor removed.  I am only 10 months away of becoming part of the 12% group that lives more than 5 years with stage 4 kidney cancer.  Don't count yourself out yet!  I would get a second opinion and then live your life as best as you possible can.  Wishing you the best!

                                              Prayers for good health!

                                              Brenda

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I'm also stage IV but currently NED. Are you seeing oncologists that are experts in treating RCC? Perhaps your treatment is fine, but I just came away from a presentation from a radiation oncologist and he talked about how much luck they've had treating mets with CyberKnife (stereotactic) radiation and also in extreme cases they've even used whole brain radiation to slow down brain mets.

I'd go onto Smart Patients and give more detailed information about your condition. Perhaps see if you can get second opinions at a research institution that has specialists that see a lot of RCC (if you haven't done this already).

I just heard last week that the FDA has fast track approved one of the new immunotherapy drugs. I'd see if I could try that drug or get into trials, and also see about getting opinions from really good radiation oncologists. Not all radiation oncologists, oncologists and surgeons are equal. What come won't touch, others do regularly. You really should be seeing top notch specialists if you can (and I'm assuming you aren't, but I may be wrong).

I don't know how any doctor can guess what is going to kill you. As soon as I hear something like that, my alarm bells for "ignorant" start going off. On the other hand, maybe he/she has seen many patients in this situation and is basing it on experience. Still, even if he/she knows this, of what benefit is it to you being told this information? Particularly when he/she can't know it with any certainty.

Hope I have helped and not made you feel worse. I wish you the best.

Todd

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