Is it the end?

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Is it the end?

by des12 on Sat Jul 28, 2012 01:34 AM

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Hi,

I've written many posts re: my husband. He has recurrent renal cell after having R kidney removed last yr at this time. He was on Torisel which supposedly stopped working after 16 treatments, then on to Sutent and after 1 1/2 cycles they took him off that as mets to liver doubled in size., besides it's in his spine, ribs and adrenals. Doc wants him to start Inlyta, but right now he's in hospital on heavy antibiotics, pain meds etc. for Ascites to the abdomen. He has extreme vomiting, diarrhea and dehydration from all of that.

They have drained his abdomen twice past 3 days and today started him on a diuretic, but he's filling up again. So we can't even get him home yet to start the Inlyta.

Do I have to face the inevitable or is there still hope? We thought he might beat this, but this threw a real curve ball at us. I'm so heartbroken watching him suffer. They had him sign a DNR today.

Thanks in advance for any comments,

Des

RE: Is it the end?

by MamaB on Sat Jul 28, 2012 04:50 AM

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Hi Des,

I am so sorry to hear your husband is having such a bad time; I hope he will soon be better.

I really don't have any answers for you; I just wanted you to know my heart goes out to you during this stressful time.

Please don't give up hope!  God is an awesome God; call out to Him and have faith for better days ahead.

In my prayers, and may God bless you and your husband.

B

 

RE: Is it the end?

by des12 on Mon Jul 30, 2012 11:38 AM

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On Jul 28, 2012 4:50 AM MamaB wrote:

Hi Des,

I am so sorry to hear your husband is having such a bad time; I hope he will soon be better.

I really don't have any answers for you; I just wanted you to know my heart goes out to you during this stressful time.

Please don't give up hope!  God is an awesome God; call out to Him and have faith for better days ahead.

In my prayers, and may God bless you and your husband.

B

 

 

Thank you for the prayers and kind words MamaB, I've been at the hospital with him for past 9 days now and he wants to come home and start the Inlyta. But they can't get him well enough to send him home. IV fluids have done nothing to hydrate hi, they're only causing him more pain as his belly keeps filling up and they've tapped him twice and he fills back up again soon after.

One doc told my son before I got there yesterday they couldn't  do any more for him. Then they sent us mixed messages as they brought in a nephrologist and he oredered more ultrasounds and liver and kidney function tests. If I take him home how can I control the horrible vomiting he's had when they gave him Zofran and had to go to Halidol to knock him out.

I'm so torn, if I don't let him come home, he'll be heartbroken. He whispered to me Sat. night that he couldn't take any more, then yesterday he  still wanted to come home. He's swollen all over from overhydration, but I guess the one remaining kidney is still functioning alittle.

One doc said hospice, then the resident said they want to be sure he's medically ready to go home. By last night we were all so confused, I finally gave it over to God.

I also feel so bad as 2 days on and off I couldn't make it up there as I got so sick myself from my vasculitis that I vomited for 14 straight hrs. here at home and was almost too sick to call anybody.

I'm praying for the right thing to do. Anyone have any suggestions or do you think it sounds too far gone to be helped by the Axitinib?

What would you all do?

Thanks,

Des

RE: Is it the end?

by Twiddles on Sat Aug 04, 2012 02:03 PM

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Hi Des,

It certainly doesn't sound promising for your husband to be able to get healthy enough to start the new treatment.  But he sure sounds determined to get home.  What about letting him go home on Hospice care and just make him comfortable?  That way he'll still get to go home, and the hospice will make sure he's not in pain and can be kept as comfortable as possible.  I know that sounds like giving up, but sometimes we have to let go and know that when the body dies, the spirit lives on, and one day we will meet again.

My husband passed away a little over a year ago, from RCC.  He had gone through all the treatments and finally just couldn't fight it any more.  I know what you're going through.  Please know that you are in my thoughts and prayers.  I hope to hear that your husband has rallied and is well enough to start the new treatment, but if not, please know that I care and that lots of people are praying for you.

Nancy

RE: Is it the end?

by des12 on Fri Aug 17, 2012 01:05 AM

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Hi Nancy,

I followed your story with tears as I know how you felt. My husband passed away 2 weeks ago and I had to help him make the decision.

It became impossible to fulfill his wishes to even come home for a few days as his belly filled with ascites and they kept tapping it only to return within hrs.

It's still somewhat of a blurwhat they were trying on a daily basis, but due to the intense vomiting and pain, he couldn't be moved. I knew when the hydration went into his tissues, there was no hope.

I begged the doctors to make him comfortable, I knew they wouldn't give me suc strong IV narcotics to give him at home.

My only comfort is that his suffering is over. I prayed God would prepare my heart to be able to say good bye 9 mos. ago and he surely did with what I witnessed.

I can't believe now our second oldest son was hiding the fact from me that he was undergoing testing and running up to the hospital and never told me until after the funeral that they suspect his RCC after 4 yrs has gone to his pancreas and they have to remove the whole spleen and most of the pancreas. He and his wife are expecting their second baby in Feb.

I'm so worn physically and emotionally, I'm not really sure how to go on now.

RE: Is it the end?

by MamaB on Fri Aug 17, 2012 03:48 AM

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Hi Des,

I am truly sorry you and your family have been through so much heartache.  I hope you can find some comfort in knowing that your darling husband is no longer suffering.

I did not know you son has RCC; how horrible!  I pray he comes through the surgery just fine and has a complete recovery.

Please take some time for yourself; try to let your body recoup from all you have been through.  I am sure you will want to be there for your son and his family.

Please keep us informed about your son's recovery and the new baby they are expecting.....a new baby has a way of brightening dark days!

Our little granddaughter was only one year old when I was diagnosed in 2007 with Stage IV, RCC with mets to the lungs....she has been such a blessing to both my husband and myself.  I tell everyone that she is my little Angel; I feel like God knew what I was about to go through and He sent her to help me get through it.

Des, my heart goes out to you and your family and I pray that God is there with you to lighten the load.

Prayers and blessings,

B

RE: Is it the end?

by des12 on Sat Aug 18, 2012 04:47 PM

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On Aug 17, 2012 3:48 AM MamaB wrote:

Hi Des,

I am truly sorry you and your family have been through so much heartache.  I hope you can find some comfort in knowing that your darling husband is no longer suffering.

I did not know you son has RCC; how horrible!  I pray he comes through the surgery just fine and has a complete recovery.

Please take some time for yourself; try to let your body recoup from all you have been through.  I am sure you will want to be there for your son and his family.

Please keep us informed about your son's recovery and the new baby they are expecting.....a new baby has a way of brightening dark days!

Our little granddaughter was only one year old when I was diagnosed in 2007 with Stage IV, RCC with mets to the lungs....she has been such a blessing to both my husband and myself.  I tell everyone that she is my little Angel; I feel like God knew what I was about to go through and He sent her to help me get through it.

Des, my heart goes out to you and your family and I pray that God is there with you to lighten the load.

Prayers and blessings,

B

Hi Mamab,

Thank you and so glad you're doing well. I'm praying to God to give me the strength that I'll need here in the next few weeks. I'm not well, haven't been for 10 yrs. and my only answer to where I found the ability to care for my husband was truly God's hand in this.

But I feel like someone knocked the wind out of me again with the same thing during the same time. I'm really in a daze, but again finding myself praying for hope for my son.

Des

RE: Is it the end?

by Bdsnyder on Wed Oct 24, 2012 09:43 PM

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Des, I am so sorry to her about our husband. My advice is to follow your gut feelings when mains decisions. Good luck. Remember to take are of yourself - eat healthy, get rest, get help. Joyce snyder

RE: Is it the end?

by peggyznd on Thu Oct 25, 2012 10:09 AM

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Dear Des,

I am so sorry to hear that you have lost your husband and hope that his memory is a comfort to you at this time.  I am also concerned that your son has been diagnosed with RCC; that seems too much to bear. 

However, it is really important that your son understands that there is likely a genetic component to his RCC, and that he must be working with an experienced oncologist who has specialized care plans for this type. 

Do you know if this is the case and whether there has been a review of the pathology of both the cases.  It is certainly unusual to have this family component, and one which will affect how it is treated.

With prayers for all of you.

Peggy

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