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Stage 4 Renal Cell Carcinoma

badgerfun70
Posts: 2
Joined: Apr 2018

My husband is in stage 4 kidney cancer that has spread to his lungs and lymph nodes by his trachea.  We have made the difficult desicion to stop treatment.  We have been doing this for 4 years now and he is sick and tired of being sick and tired.  He is only 47, and he wants to enjoy what time he has left feeling better.  The treatments we have tried in pill form was way to much for him to handle.  We tried immune theraphy with no luck it did not work.  He is now I think showing more signs of the cnacer getting bigger or just developing more.  He has a cough that is getting more and more severe, and his breathing seems to be hard at times.  Any help with other people that are going through all this as in what to start expecting to happen.  I know no one can tell us how much tiime we have with him but I like to plan and I just want to know what to expect has it gets to the end.  Any knowledge of this would be so helpful.

stub1969's picture
stub1969
Posts: 776
Joined: Jul 2016

First of all, let me express my sincere thoughts and prayers of strength to you and your husband.  Although I don't have any insights on the "next steps" I do appreciate and honor his ability to make this decision.  I'm hopeful that his time left with you is full memory-making events.

Blessings--

Stub

badgerfun70
Posts: 2
Joined: Apr 2018

This was one of his toughest desicions.  We have two daughters 18 & almost 17 and he still wants to do so much with them.  This cancer has effected our whole family and you will never know that unless you live it.  It has changed everything and it has been a very tough road this last year especially.  

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

smartpatients.com      You will find alot more folks there with the info you are seeking, good luck.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

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

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

So very sorry you guy's are going through this.  Praying hard for your husband to have many wonderful painless years with his family. The most important decision for any of us is the make sure we know when we leave this earth,  we will be in Heaven forever with our LORD and Saviour Jesus Christ.  

Acts 16:31 KJV

shepp
Posts: 11
Joined: Aug 2017

I find proselytizing on this board to be inappropriate and disrespectful.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

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's picture
rhominator
Posts: 232
Joined: Nov 2015

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.

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

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

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

My last post to you was not very positive and was pretty self-focused. It was written from my hospital bed during a rough patch of pain.

Since that time I've learned about palliative care and hospice.

Is it possible that your husband could go on palliative care and have them help address his symptoms as he continues cancer treatment?  if he has firmly decjded to end cancer treatment they can keep him more comfortable, as an out-patient until such time, if the time comes, that you decide that hospice is a better choice.

We all hope to hear back from you to hear how things are going.

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

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.

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

This story gives comfort in this couple way of handling these hard times. 

jazzgirl's picture
jazzgirl
Posts: 125
Joined: Nov 2017

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 -

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