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I need advice....

Dan6652
Posts: 25
Joined: Oct 2016

Hello,

 

Ive come one here from time to time. My brother was diagnosed with Stage IV RCC (clear cell) in September of this year with mets to the lungs and spine. After nephrecgtomy, spinal surgery, rehab and radiaition to spine, he was readmitted to the hospital with low blood pressure, heart rate and pleural effusion It seems with the recovery of 2 surgeries the lung mets had time to grow. He was treated with lasix and the effusion seemed to improve. He was then started on Votrient before Thanksgiving first 2 weeks (600mg) and up to (800mg) the third week. After the Votrient, his appetite started to severly decline, then he started having horrible panic attacks along with A fib. They have removed him from the Votrient and are now inserting a feeding tube so that he can have some type of nourishment. The oncologist rounding on Thursday and told him that the next step woudl be Opdivo since he could not tolerate the Votrient. Then on Thursday evening, the Cardiology team ordered a CT scan and told us on Friday the disease in the lungs has increased. This outraged the oncology team who fired the cardiologist for ordering a scan without consulting with them. The oncology team said he was not on enough treatment to show improvement. Flash forward to this morning the oncology rounder told my brother he is runnng out of options because he would have to get opdivo as an outpatient and he is to weak for that so hospice may be the next step.I want to scream. They put this man through 2 major surgeries in the last 2 months only for it to end up like this. We have discussed using the online consult appointment with the Cleveland Clinic for some kind of guidance. My brother is not ready to give up but he is so weak. We are beyond heartbroken. Any ideas are welcome. I respect our opinions.

 

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

Dan,

Do the best you can. Heres hoping for thimgs to turn around.

 

 

Icemantoo

mrou50
Posts: 389
Joined: Mar 2013

This is the hard part of this disease, it comes with hard choices.  Just last week I was considering dropping all treatments because they make me so sick and weak somtimes, but I was fortunate to find out the Cabo is working inside of me and has reduced my tumors.  My ONC team and I had a discussion about treatments and what was told to me was that a some point in my life the treatment will be worse than the disease and that they have had patients so weak that the treatment itself could kill the patient. They assured me when the time comes that treatment is doing more damage than good they will let me know and we can make the tough decisions that have to be made.  My advice is to sit down with your brother and find out what he truly wants from life and then ask his ONC team alongside your brother are his wishes possible or in the case of choosing treatment, would the treatment be more detrimental to him than good.  Regardless this is a tough decision for your family and your brother, but ultimately it is your brother that must make this decision. God bless you and your family and good luck with this.

Mark 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I don't have any advice to offer. But I wanted to reach out to let you know that I am sending good thoughts and prayers your way. I hope all goes well for your brother.

Take care!

Hugs

Jojo

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Good grief, Dan --

This process is tough enough without having to deal with squabbling care teams.  Is there a case manager (or someone in a similar role) who could rally the folks on the care team, sit down with you all, help you pick through all of this AND provide some support for you all?

All the best -- You're in my thoughts and prayers --

Jerzy

 

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

for you & your family Dan.  Tough stuff to be sure.  Maybe you can request a care conference?  That is where all services sit down together with your brother and whoever he wishes to be there.  That can really help clear things up when you're getting differing information from different people, services.

God Bless,

Donna~

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