stage 4 kidney cancer

My father has stage 4 kidney cancer. He was just diagnosed. It has spread to both lungs, liver, lymph, and bone. He is back in the hospital due to fluid in lung again. They put a catheter to drain at home. They cannot start him on any meds until the fluid is under control.

 Its so scary how fast within a week someone that seemed so healthy, looks so bad. The Dr. says at the rate he is going they give him 3-6 mo. I wish the meds would start so maybe they will slow things down and give him time to adjust. I would like some feed back if any on how you deal with knowing this will eventually will take your life. I am so sick to think of my father having to think about this. I love him but he is not a very strong person wich scares me because I dont want him to give up just yet. We try to be very positive, but we also need to deal with what maybe.

Please if anyone has any feedback.

A concerned Daughter  

On 4/16/2009 healthwise2 wrote:

My father has stage 4 kidney cancer. He was just diagnosed. It has spread to both lungs, liver, lymph, and bone. He is back in the hospital due to fluid in lung again. They put a catheter to drain at home. They cannot start him on any meds until the fluid is under control.

 Its so scary how fast within a week someone that seemed so healthy, looks so bad. The Dr. says at the rate he is going they give him 3-6 mo. I wish the meds would start so maybe they will slow things down and give him time to adjust. I would like some feed back if any on how you deal with knowing this will eventually will take your life. I am so sick to think of my father having to think about this. I love him but he is not a very strong person wich scares me because I dont want him to give up just yet. We try to be very positive, but we also need to deal with what maybe.

Please if anyone has any feedback.

A concerned Daughter  

 

Hi - can you give us an idea of what meds they are proposing?

The standard treatment for Stage IV kidney cancer is to remove the affected kidney and the tumour growing on it, and then prescribe drugs such as Sutent or Torisel, to seek to stop the secondary tumours (mets) growing more, in the places they ahve reached, eg lungs, liver. Plus to use any other techniques they can to tackle the mets in other places, eg bones.

It sounds from what you've said that they are not talking about operating on him, but going straight to meds (I assume something like Sutent or Torisel, or possibly Nexavar? They are the three main new drugs for advanced kidney cancer).

If so, it sounds like they think he is too weak to have the kidney operation. However, they should only not operate if that's what they think - NOT if they think 'he's too far gone to be worth operating on'!  If his oncologist things that, get a second opinion from another one, better still a surgeon (ie, since it's the surgeon who has to do the op!).

Nevertheless,if indeed he is too physically weak to withstand an op at the moment, putting him on the drugs straight away may well shrink the main tumour on the kidney (the primary) sufficiently for the op then to be possible (he would have to stay on the drugs to tackle the mets afterwards.)

This has happened to several people, and includes the husband of oneof hte regular posters here, Twiddles. Like your  father, he was given only a few months more, but took Torisel to shrink the primary, then had it out, and is now a good nine months on, and still hanging on in there!

Something everyone will tell you is this - when it comes to kidney cancer (or Renal Cell Cancer as it's formally known - hence RCC) (so do check the threads on renal cancer as well here), it's essential to have a proper renal oncologist who understands RCC - it's a 'different' kind of cancer and needs its own specialist.

Finally, I can't recommend strongly enough a fantastic web group called kidney-onc which has fantastic information and patient experience, and can answer just about any question you put to it. You can join on http://cancerguide.org/kofaq/

It really is incredibly helpful.

All the very best to you at a scary time - Julie.

On 4/16/2009 healthwise2 wrote:

My father has stage 4 kidney cancer. He was just diagnosed. It has spread to both lungs, liver, lymph, and bone. He is back in the hospital due to fluid in lung again. They put a catheter to drain at home. They cannot start him on any meds until the fluid is under control.

 Its so scary how fast within a week someone that seemed so healthy, looks so bad. The Dr. says at the rate he is going they give him 3-6 mo. I wish the meds would start so maybe they will slow things down and give him time to adjust. I would like some feed back if any on how you deal with knowing this will eventually will take your life. I am so sick to think of my father having to think about this. I love him but he is not a very strong person wich scares me because I dont want him to give up just yet. We try to be very positive, but we also need to deal with what maybe.

Please if anyone has any feedback.

A concerned Daughter  

 

I am very sorry for your circumstances. I was diagnosed with stage 4 with mets in lungs and places on Nov 11, 2008. I am on my 4th round of sutent. There have been some positive responses and some set backs at the same time.  Cancer is not prevalent in my family so this is a first for us. I have large tumors in both kidneys. The disesase will take my life. Physically, I am not who I was and my hair has turned white and I have limited enegy.

 But more importantly, I have two young daughters and a grown son  -- a loving wife and supportive friends and family members that send prayers up daily.  We are a family of faith and will not stop fighting until the last day.  However, it was important to me to have clear and frank conversations about death and the events leading up to it and plan for it. We were truthful with our children and made sure they understood what was happening. That God is always is control even if we can't quite understand it. Faith is like that.

After the initial shock -- there is a whole cycle of grief but eventually, the patient, your Dad, will come to grips with the circumstance. I spent many nights looking at the ceiling thinking about all the things I would miss in the lives of my girls. I have not given up but I have come to terms with it. It is most important for your dad to talk with someone he trusts about what is ahead - not just treatment but the end of life things that he needs to talk about. You too.  I may miss some things later in life, but I decided to savor what I can to the fullest now. Yes, there are hard days ahead but other days full of laughter and love and kindnesses.  I pray that you and your family find peace.  In the months since Nov 08 I never spend any time asking 'why" only "what's next" and lets get to it.

steve

On 4/21/2009 atthebeach wrote:

 

On 4/16/2009 healthwise2 wrote:

My father has stage 4 kidney cancer. He was just diagnosed. It has spread to both lungs, liver, lymph, and bone. He is back in the hospital due to fluid in lung again. They put a catheter to drain at home. They cannot start him on any meds until the fluid is under control.

 Its so scary how fast within a week someone that seemed so healthy, looks so bad. The Dr. says at the rate he is going they give him 3-6 mo. I wish the meds would start so maybe they will slow things down and give him time to adjust. I would like some feed back if any on how you deal with knowing this will eventually will take your life. I am so sick to think of my father having to think about this. I love him but he is not a very strong person wich scares me because I dont want him to give up just yet. We try to be very positive, but we also need to deal with what maybe.

Please if anyone has any feedback.

A concerned Daughter  

 

I am very sorry for your circumstances. I was diagnosed with stage 4 with mets in lungs and places on Nov 11, 2008. I am on my 4th round of sutent. There have been some positive responses and some set backs at the same time.  Cancer is not prevalent in my family so this is a first for us. I have large tumors in both kidneys. The disesase will take my life. Physically, I am not who I was and my hair has turned white and I have limited enegy.

 But more importantly, I have two young daughters and a grown son  -- a loving wife and supportive friends and family members that send prayers up daily.  We are a family of faith and will not stop fighting until the last day.  However, it was important to me to have clear and frank conversations about death and the events leading up to it and plan for it. We were truthful with our children and made sure they understood what was happening. That God is always is control even if we can't quite understand it. Faith is like that.

After the initial shock -- there is a whole cycle of grief but eventually, the patient, your Dad, will come to grips with the circumstance. I spent many nights looking at the ceiling thinking about all the things I would miss in the lives of my girls. I have not given up but I have come to terms with it. It is most important for your dad to talk with someone he trusts about what is ahead - not just treatment but the end of life things that he needs to talk about. You too.  I may miss some things later in life, but I decided to savor what I can to the fullest now. Yes, there are hard days ahead but other days full of laughter and love and kindnesses.  I pray that you and your family find peace.  In the months since Nov 08 I never spend any time asking 'why" only "what's next" and lets get to it.

steve

Steve, I wanted to thank you for your letter, I related to it so well. My father too has two girls and my younger brother who past away two years ago.  I had a good cry after I read it. I pray for you and wish you and your family all the best.

My father has taken a turn for the worst. He was moved to hospice today. He was diagnosed 3 weeks ago and it spread so bad in his lungs they cannot remove the fluid anymore. They finally gave him his sutent yesterday wich I think he should have recieved it weeks ago and its to late now. He just found out last night there is nothing they can do.  So he is going through all those emotions. We are too. Just did not expect it to happen so fast. He didn't even get a chance to go home for the last time, but like you said God has his reasons and he is actually in the same place my brother was when he passed. I believe he will be there to guide him. This pain is almost unbearable, but we as a family will be ok together. I am 6months pregnant and his grandchildren are his life and he will have to be my childs gaurdian angel.

Please let me know how you are, and take care of you and your family. You are in my thoughts.

On 4/24/2009 healthwise2 wrote:

 

On 4/21/2009 atthebeach wrote:

 

On 4/16/2009 healthwise2 wrote:

My father has stage 4 kidney cancer. He was just diagnosed. It has spread to both lungs, liver, lymph, and bone. He is back in the hospital due to fluid in lung again. They put a catheter to drain at home. They cannot start him on any meds until the fluid is under control.

 Its so scary how fast within a week someone that seemed so healthy, looks so bad. The Dr. says at the rate he is going they give him 3-6 mo. I wish the meds would start so maybe they will slow things down and give him time to adjust. I would like some feed back if any on how you deal with knowing this will eventually will take your life. I am so sick to think of my father having to think about this. I love him but he is not a very strong person wich scares me because I dont want him to give up just yet. We try to be very positive, but we also need to deal with what maybe.

Please if anyone has any feedback.

A concerned Daughter  

 

I am very sorry for your circumstances. I was diagnosed with stage 4 with mets in lungs and places on Nov 11, 2008. I am on my 4th round of sutent. There have been some positive responses and some set backs at the same time.  Cancer is not prevalent in my family so this is a first for us. I have large tumors in both kidneys. The disesase will take my life. Physically, I am not who I was and my hair has turned white and I have limited enegy.

 But more importantly, I have two young daughters and a grown son  -- a loving wife and supportive friends and family members that send prayers up daily.  We are a family of faith and will not stop fighting until the last day.  However, it was important to me to have clear and frank conversations about death and the events leading up to it and plan for it. We were truthful with our children and made sure they understood what was happening. That God is always is control even if we can't quite understand it. Faith is like that.

After the initial shock -- there is a whole cycle of grief but eventually, the patient, your Dad, will come to grips with the circumstance. I spent many nights looking at the ceiling thinking about all the things I would miss in the lives of my girls. I have not given up but I have come to terms with it. It is most important for your dad to talk with someone he trusts about what is ahead - not just treatment but the end of life things that he needs to talk about. You too.  I may miss some things later in life, but I decided to savor what I can to the fullest now. Yes, there are hard days ahead but other days full of laughter and love and kindnesses.  I pray that you and your family find peace.  In the months since Nov 08 I never spend any time asking 'why" only "what's next" and lets get to it.

steve

 

Steve, I wanted to thank you for your letter, I related to it so well. My father too has two girls and my younger brother who past away two years ago.  I had a good cry after I read it. I pray for you and wish you and your family all the best.

My father has taken a turn for the worst. He was moved to hospice today. He was diagnosed 3 weeks ago and it spread so bad in his lungs they cannot remove the fluid anymore. They finally gave him his sutent yesterday wich I think he should have recieved it weeks ago and its to late now. He just found out last night there is nothing they can do.  So he is going through all those emotions. We are too. Just did not expect it to happen so fast. He didn't even get a chance to go home for the last time, but like you said God has his reasons and he is actually in the same place my brother was when he passed. I believe he will be there to guide him. This pain is almost unbearable, but we as a family will be ok together. I am 6months pregnant and his grandchildren are his life and he will have to be my childs gaurdian angel.

Please let me know how you are, and take care of you and your family. You are in my thoughts.

 

 

Concerned Daughter,

My heart goes out to you and your family. I believe that during times like these we get an extra portion of grace and peace to help us -- those who stay and those who go. Your father sounds like he is well loved and he can be comforted by the great legacy of his grandchildren and a caring daughter. While I am sure the next days will be difficult, please know that there are others who stand with you and your family. In addition, the story is not over until the last page has been turned. Anything can happen. My best to your dad and you.

steve