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How do you deal with kidney cancer that goes terminal?

gabigirl's picture
gabigirl
Posts: 6
Joined: Oct 2013

My husband has stage 4 RCC that spread to multiple spots.  He started Votrient and a month ago the PETScan showed the volleyball size tumor shrunk 40%.  However, there are now 2 spots in the liver!  The oncologist said to enjoy each day as long as we can.  We were told surgery may be done and now that it moved to the liver the surgery is off.  How do you manage if you have this diagnoses or are a caregiver of someone?

Jojo61's picture
Jojo61
Posts: 365
Joined: Oct 2013

Hi Gabi,

I am new here, so I have no advice to give - other than maybe consider getting a second opinion?

I want you to know that my thoughts and prayers are with you and your husband.

God bless!

 Jojo

 

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Hey Gabi... first, not bad advice.. live each day to it's fullest..!  And guess what else..?  There are a bunch of us here with Mets in mulltiple spots..  Scarey, you bet.. but..   There are some awesome drugs out there..  However if you care to share more info... can try to offer more suggestions.  Votrient is an awesome drug for those that tolerate it...  there are a bunch more after that...    And I am not sure how many.. but some have used the drugs to make the surgery possible...

Ron

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

More...  I just re-read the info you posted...  It sounds like you got the wrong doctor... where are you and what kind of Dr are you seeing..??  There are separate drugs for bone mets...  Sounds like he should be on one of the two bone met  drugs, Plus the Votrient.  Then you mention a brain scan, but were any scans done on his torso, etc..??  And it would be rare to see any results in 30 days on Votrient.. if your info is accurate then perhaps you need to find a better Dr ASAP.  I am sure others will chime in soon..

Ron

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

In oct. 2011, my first oncologist felt that I had as little as 6 mos. to live. I had as many as 20+ tumors in my lungs, liver, nodes and bones. I found a new oncologist who put me on MDX-1106, a trial drug. After 18 mos., almost all tumors were wiped out. I still have a few left and have just completed IL-2 immunotherapy. I will be rescanned in around a month. Am I dead? Not even close. I expect to live a long time with what may be considered a chronic but stable disease. Will everyone have my good fortune? Nope. But unless an aggressive approach is taken to find a better doctor and maybe a clinical trial, you can count on a short life. There are many stage 4 people here living active lifes. The current drugs are superior to those used just a few years ago. Don't accept your doctors prognosis. Search for a renal cell ca. specialist immediately. Then hang around for a while. Life is great. Lets all stay on this side of the grass. Good luck.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I look at my disease, and fully understand that it will probably kill me.  But it might take 50 years.  And, in that case, I don't care.  I know it will not get me in the next 6 months.  Something else might, but not my cancer.  I had to think of the last one to find out if I should pay the traffic ticket I got.  I did.  (I did not know it was illegal to read my email at a ] traffic light).

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

The drug that Fox calls MDX-1106 has now been named. I am currently on Nivolumab (MDX-1106) as part of the drug trial. In combination with Sutent since February 2013.

What was a 3.8 cm tumor in my adrenal gland is now listed as a swollen, or thickened adrenal gland. It is quite possible just scar tissue.

Do not give up, find a doctor tht has not given up.

 

gatorbob
Posts: 20
Joined: Oct 2013

Never,never accept the first opinion. If you are close to Emory or Mayo...pick up the phone...NOW!! If not find a clinic that has ongoing drug trials and call....NOW! Have stage 4 RNN(pap.) . Was told 14 months ago to get acquainted with Hospice.After 14 months at Emory the cancer is stablized and is beginning to shrink.Second opinions can bring positive outcomes!! Good luck.

a.oakley
Posts: 32
Joined: Oct 2012

Gabi.  That's an interesting question "How do you manage?".   I think everyone manages differently.  We all are individuals and we all have our own personalities and style.  I think it's important to be true to yourself and be kind to yourself.  What works for someone else may not be what works for you. 

As a caregiver, I have good days and bad days, good moments, bad moments.  It's a process and I'm adjusting to the new lifestyle.  I try to learn everything that I can.  I want to always know that no matter what happens, I did all that I was able to do to help. Knowledge is comforting for me.   It's a really rough journey.  My husband copes by just listening to the doctors and doing what he's supposed to do.  He doesn't research, doesn't ask questions about mortality. He doesn't want to know those things.   He keeps his mind occupied and stays busy.  That's his coping style.  He's pretty happy.  He chooses to live and be positive and doesn't want to talk about "it".  He is a positive person and is hopeful. 

I do believe that after the initial shock of the diagnosis, in time things do mellow out a little.  You find out the plan, meet others here who are surviving and doing well, and you just come to realize that this can just be a chronic condition.  It was very strange for us to realize that we really cannot plan our lives like we thought we could.  We are just not in charge and don't have that ability.  We had a twenty year plan.  Now we have a 2 month plan.  Scan to scan.  We live more in the moment, and that's a good thing.  

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