What are the last 1-2 weeks like with kidney cancer?

My husband (48) has a strange case of clear cell carcinoma---one of the 700 or so documented cases of CCC originating outside the kidneys. His was first found in the urethra (a pearl-sized tumor was removed), then, at a major university center, it was found to exist also in the prostate gland, bladder, and 12 inches of colon, all of which were removed in one 10-hour surgery.

No chemo, no radiation. Seven uneventful months. Then major ascites and fatigue; 4.3 L of fluid were removed, only to refill a few more times since then. After several paracentesis procedures, he had a PleurX catheter installed, and since that we've had three 1-L draws that have reduced the size of his abdomen and made him comfortable.

He is now at home under hospice care, very weak (bedridden), with no appetite, no pain, but occasional waves of nausea or lightheadedness. He gets IV fluids but drinks very little by mouth---no interest. He is in his right mind and alternates between helping me prepare for his passing and having an emotional conversation with me or our three teens.

For those who have already experienced a loss to this cancer, what were the last weeks/days like? What turning points were significant, now that you look back? What signs did you see happening? Two weeks ago, we were told he had "just days." Now, it's hard for me to tell whether it's another 2 weeks or another 6-8. I need to be able to prepare the family the best I can. I am also dealing with two sets of in-laws (his dad and mom and their spouses), who have been living with us (from out of state) for four weeks now...and have told others in the family that they are "here for the duration."

Lacking a crystal ball...help?

Thanks.

Diane in Florida

Hello Diane:

A very sad story, but have courage and do not give up so easily. I don't understand? You mentioned they called it an extra renal clear cell carcinoma found in the urethra? Could it be a transitional cell carcinoma?

I would suggest you get a second opinion about the pathology as a start. Also a second opinion from another Oncologist. No chemo or radiation? That seems odd since your husband is only 48? Too young is just give up on. Time is critical.

I had swelling in my stomach and fluid drained and they gave me less than 6 months to live. I am still here 6 months later with a new Oncologist and new treatment, but always planning ahead for the next treatment. You (your husband) have to be your own advocate and do not be afraid to get second, third, or even fourth opinions.

God bless and good luck in this struggle with this demon.

Krys 

I agree with the other writer.  Why no Sutent or Nexavar?  Did they offer anything?  I would certainly be asking ASAP.

 Good luck to you and God Bless you and your family with clarity and stregnth.

Debbie

Dear Diane,

I probably shouldn't be on this site because I'm grieving myself. I lost my boyfriend to RCC last Wednesday. He was told a year and a year ago he had 2-3 months withour treatment and 10 months with treatment. He out lived all statistics.

His last few weeks he wasn't in any pain. Hospice kept him comfortable. He talked out of his head alot, but still recognized family and friends.

He was full of life for about a week and a half before talking out of his head. He had always been some what weak because he had mest to the lungs.

My heart goes out to you because I know what you're going through. May God give you the strength to be there and to be able to let go with peace when the time comes.

God Bless

 

I lost my Mom to RCC on Fri September 4. She had just started the Interferon/Avastin chemo and the 3 shots of Interferon brought her cell counts down so low that even a blood transfusion did not help. She was surrounded by her family to say her final goodbyes and it was decided by her family and Hospice that the best thing to do was to keep her painfree so I gave her morphine and Ativan every 3 hrs.  Hospice took wonderful loving care of her, supplied a hospital bed, oxygen , and all medications and help we needed to take care of her at home. They also arranged the last rites and called the Funeral home and medical examiner. Mom was 71 and lived 2 years after diagnosis.

I've posted and actively read this site for the last year. I thought I'd chime in on this topic as my mother passed away Sat. Sept. 5, 2009 from RCC. She was dx July of '08. My mom was a little different as she was on dialysis because she had no kidney's, but the last week my mom got extremely tired. We finally got hospice in our home the week before she passed. We were lucky in that mom didn't seem to have much pain, at least whenever you asked her she said she felt no pain. We did start giving her morphine sulfate the last week as hospice said it also helps with breathing. Mom got to the point on Friday where she didn't open her eyes but she did acknowledge speaking to her my squeezing your hand or sometimes squinting her eyes. On Saturday, I was beside her holding her hand and I said "mom if you see a light you can go towards it, we all love you and we'll be ok" - right after that she opened her eyes grasped for breath and was gone. It was very peaceful & as much as I miss my mom I know she's in a wonderful place and ready to leave her cancer ridden body. So, I hope it helps to know if it's time it can be a very peaceful journey.

 Bless you all,

Angela