Stage 4 Renal Cell Carcinoma

I'm sorry that I can't give you information about this. I don't know the answers. I agree that smartpatients might be a good place to go for more information. I have a deep admiration for your husband making this very difficult decision. Personally, I'm not a person that does well with drugs of any kind. The side effects seem to affect me more than other people and really affect my enjoyment of life. Even mild side effects really pull me down. I can understand and appreciate your husband's decision. I'm sure sorry for this terrible situation you all are going through.

I hope you get answers. I wish you all only goodness and peace in what is just a really difficult situation.

Best wishes,

Todd

However, I've only been going through the treatment for one and a half years. Mine has been fairly aggressive though. My mets exist in my bones (femurs, pelvis, thoracic, lumbar, and sacral vertebrae, and ribs) and more recently in my lungs. The lung mets are new but they are growing quickly and multiplying.

I've been through Votrient, two separate immunotherapy clinical trials, and just now going on Afinitor and Lenvima. My neurosurgeon and radiation oncologist have given me prognoses of two to twelve months. My medical oncologist thinks I may have more than a year until death.

I've had severe side effects from the pill form medications, too. So, I know where your husband is coming from; sick and tired of being sick and tired. The mets in my spine have caused spinal cord and nerve compression which has left me in extreme pain. The bone mets are extremely painful as well. If I were to decide to stop the treatment from cancer, I would still need treatment for my pain.

I can't give you any inside information about the absolute last days, but I know, and my family knows that I don't have long to go. If you haven't already, you should contact someone who deals with end of life financial matters and make sure that the family is taken care of, financially, as well as possible after his passing.

I'm also in the process of writing letters to each of my three sons to pass on to them. I'm giving the letters to them now because we've strained relationships that I'd like to try and address before I'm gone. I know that some people write the letters, or make the videos, to be delivered after death. I don't know if either of those might be helpful in your family.

I'm so sorry for your situation. I'm glad, for your husband, that he's had you to care for him for four long years. I couldn't do this without my wife's help. You are a special person.

rhominator said:

Badger and Abunai

Such sobering thoughts and difficult times. I feel for you and your families.  These are hard things to think about, let alone discuss.  I must admit, also being stage IV with mets, this subject matter is never too far from my mind. 

But, since the day of my dx, I have rested in the comfort and security of my salvation through Jesus Christ. 

I sincerely pray that you have the same peace that I have.

Abunai, I hope the letters to your sons restores your relationships and that you have joyous days ahead with your family.

We will never meet here on earth,  but, I will see you in Heaven.  God's blessing 

Wow. So sorry to hear this. I understand your husband being tired and just wanting to "live" and enjoy what he can. You are right when you say nobody understands unless they have lived it. All of us here have and please know you are not alone. No matter how you are feeling, please keep reaching out. Nothing is ridiculous or selfish. This is about you and your beautiful family! I wish I had the right words, but all I can say is we are all here with you.

Badger and husband, I cannot imagine the pain and anxiety your family is experiencing.  Not fair for anyone, let alone thinking of your young daughters.  I hope you are able to get help and guidance with your questions, perhaps from hospice nurses and doctors.  Abunai had many helpful suggestions for you as he and his family are on their own difficult path.  May there somehow be comfort for all of you - we are all here holding both families.  Take care -