My husband has been battling PC for 10 years. He's done cryotherapy because it has already spread to the pelvic wall when discovered. Gleason score is 10. Did radiation and hormone therapy for several years till he became resistant. Cancer clogged ureters so stents were added. Left kidney no longer functions. Right kidney has poor function. Then treated with taxotere with prednisone and xgeva injections then treated with cabazitaxel and finally xtandi while still getting xgeva injections monthly. The xtandi seemed to be working well - brought his PSA down to .80 but suddenly he had difficulty walking. One day he needed a cane. 2 days later a walker. 3 days later he can't get out of bed. After some physical therapy he can move his legs and stand briefly to get on a commode but it's very difficult and that's all he can do. I fear that soon I won't be able to get him up at all. I can't get him in a car so no ability to get tests. He has decided to quit taking xtandi and all other treatments and hospice is coming to the house to assist. Since his PSA was so low I'm confused about how much cancer is actually active and how long he may survive and we are unable to get any imaging tests. It's just too painful for him to move. Has anyone else had a similar experience? Can anyone shed any light on approximate survival? Months? A year? This just started a month ago (Thanksgiving week).
He barely eats, is very weak, is shaky and twitchy but drinks a ton of water and seems fairly alert when drugs wear off. I'm lost.
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I wish I could say something to help you from a medical standpoint. I can say that we are here with you. You are not alone. You have many, many people from this group thinking about you and your husband , hoping for the best and hugging you in a virtual way. Stay strong for him.
I received an e-mail asking if my experience with cryo would help GTWaites. Mine was done 14 years ago and back then they only did it if the cancer hadn't spread. I chose cryo because it's repeatable unlike the other treatments but I don't know if spreading to the pelvic wall means it had spread outside the prostate or not. I wonder if the excessive thirst might be stress induced diabetes -not that he needs another problem- but it can't be helping his situation. He doesn't have to go out for a blood test- a nurse could come and do it- You said hospice is coming- no experience with them but except for Art Buchwald that's usually the last step. Buchwald outlived the prognosis and was sent home again. Cryo wasn't problem free for me- the nerve bundles didn't survive the freezing but the cancer never came back.
I didn't know what to say the first time I read this--or the second. My heart is with you. My dad died after a very long illness (not PCa, but years nonetheless). In the end, those of us around him--everyone who loved and supported him--had to accept his decision when he decided to stop treating. It's not easy. It hurts like hell. If your husband does not want to treat and is ready for hospice, those who love him can spend time with him. Sometimes there will be stories. Sometimes he'll just sleep. But neither he you you need feel alone.
I agree with what Yost said about bringing family and those in relationships to be nearer in the coming days/weeks. Also, ...
You are part of the Hospice experience, too. Come right out and tell the Hospice people about how Lost you are feeling now, and how you may need help with those feelings, and all these things that are happening so quickly for you now, after having been a primary caregiver for 10 long years.
These documentary films may be of some benefit for some of the extended family members at this time of life.
If you need Respite care, or daily help... just to get some sleep, if nothing else, ... don't hesitate to talk to the Hospice people, and others who may be in your life and in a position to help.
When I read your post the first time I wanted to reply "Why don't you call an ambulance to bring your husband to the nearest hospital where they will hopefully be able to do testing as required?"
But then I read your post again and realized that your husband doesn't seem to want any more treatment.
This is very sad. What if the problems could be easily solved with some local radiation to get rid of the pain or what if it is not cancer-related pain at all but a muscular thing?
Perhaps you could talk to your husband again, tell him how much you want him to be with you, encourage him to seek help. Maybe it is not too late...?
Thank you for some really good advice. Yes, my husband has decided not to fight anymore. It's his choice and he has endured more than anyone should. He has fought hard for a decade. My guess - just a guess at this point - is that even though the PSA tests were showing low results the cancer was still growing because his spine is a mess. He can no longer move his legs voluntarily and when I roll him over for the bedpan his spine grinds and pops- it's horrible. So, we are on the journey toward the end and we're both resolved with that now. He yearns for it.
It's been a long difficult journey but I suppose it's all part of the life cycle.
Thank you for taking the time to offer advice. God bless you.
It must be so difficult to for you both, and yet, ... as you say, it is all part of the life cycle.
This level of personal caregiving is really difficult. It's already hard enough for trained nurses who get entire training course instruction modules and tests for how to do such things. If you are having any problems or questions about ways to make these things less difficult - for both your husband and yourself - do ask the palliative/hospice people to bring in equipment and supplies to make it easier. Much of it may be covered by insurance if he is in an official "hospice" situation and the items are prescribed by the doctor/hospice team.
One such thing might be a hospital style bed, and appropriate sheets and pads and protectors. A bed that raises can put him into a position that makes using the bedpan more natural once it is under him. A bed that can have side rails can make it easier for him to help roll himself and stay to one side as you may have to reposition him. A bed with rails can also be safer, and prevent him from falling or rolling out of bed. A bed with the capability to attach a trapeze-like bar might allow him to use his arms and hands to partially lift himself, rather than leaving all his weight to you or other caregiver(s). Etc.
There are also "fracture bedpans" which are thinly tapered flat on one side to make it easier to slide them under and out from under a patient with compromised bones or limited mobility. They may work better than the usual thicker bedpans.
There are also numerous videos about everything from A to Z of using bedpans on the Internet, via Google or YouTube. Lots of tips and tricks to make it easier for both the patient and the caregiver. Rolling up a "pull/roll sheet" on one side, and grabbing the roll and pulling up on it to roll him, instead of pulling or pushing directly on his body. Putting down waterproof layers to protect bedding below. Having the gloves, powders, wipes and other supplies on hand and organized for cleanliness and comfort. (Some people have even experimented with lining a bedpan with a larger plastic trash bag including an absorbent maxi-pad with wings stuck in it off to one side to absorb liquids, and then simply disposing of the whole thing afterward.) The point is ... "what ever works best, for you both".
I hope you do keep posting when you can, and sharing the reality of what you are experiencing. We are here for you.
Yes, unfortunately, PSA testing is not always a clear indicator for what is going on... CT and bone scans can give better indications but even they can leave things hidden (that is just my personal believe).
It sounds like you have gone through so much, your husband with his illness and the fight against it and you as his caretaker, and it is good that you are so close that you are able to discuss the end of the fight and resolving yourselves to that.
I pray that your last days, weeks or months together - however long it is - will be painfree for him and an opportunity for you both to share your closeness in whatever form and that when the end comes he will go in peace and you will be able to find comfort in the thought that at least now he doesn't have to suffer any more and that you will always keep the good memories.
I’m sorry for his and your suffering. At times it seems that all that we “can” do is pray . I have a friend that passed away a few months ago from bladder cancer.. I last saw him and we helped him to the beach. He told me that he was ready because he couldn’t tolerate the pain anymore.He was a strong Buddhist.So he refused all drugs and passed to a better place.I respect that type of faith and strength . As far as we know , when our lights go out , that’s an end to our suffering and pain on earth. I do see a beauty in a permanent rest over unending horrible pain and suffering. Love is all that we can give your father..Much love to him and you. Mercy for your father..God bless.
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