It has been a long time since I have been on this forum. Unfortunately, we have the news that my SO has run out of all treatment options except for experimental drugs. He will not be taking it as his body has been weakened from all the different cocktails he has already tried.
His PSA is now 185, it doubled within the last month. His red blood cell is low and he has high liver count. He has a mutation ( TP 53??)thus the reason that his last treatment of Radium 223 and Jevtana were not effective.
He has been regressing. He is so weak and tired that he has been sleeping more and more. For the past 3 days, he sleeps for 21 to 23 hour per day. He takes tramodol and tylenol for pain killer. He doesn't urinate as much but he will still eat a couple of meals per day then go back to bed. His mind functions fully but may be a bit foggy with his short term memory. He has lost a lot of muscles everywhere.
It seems like the cancer has spread thus the additional pain.
He will still go for a scan in a weeks time for further assessment and possibly see if there may be any other treatment that can be done. Highly unlikely his body can not handle any more drugs.
His Doctor's nurses came to talk about his hospice care plan today.
I am so worry that i will lose him soon. Based on the symptoms I have described above especially the tireness and weakness and the doubling of PSA in one month (last week lab was PSA 185), does anyone know what the days/months he may have left with me?
I just wished he never had PC nor anyone of you guys have it. I just pray that a biotech companies will come out with a cure for everyone.
It’s always difficult to say how much time someone has left. It can never be predicted accurately . Everyone in post treatment circumstances is basically a hospice condition. My buddy , Urang on this group , lasted 22 years so far and has been out of treatment options for several years. Once in a while he has radiation to kill a painful spot on his spine. He has a lot of stainless steel spinal jewelry as well that has to be reset or tightened up now and then. He is in hospice style care ( keep him comfortable) and he runs around his country farm doing things here and there. His psa was running in the 250s but now is up in the high 500s but he is still running better , more mobile, than I am. He needs a lot of heavy pain meds but is a trooper. You can never tell how long ... it can be short but it’s not at all unusual for someone to last several years post treatment hospice.
I wish the best for the both of you ... hang in there and don’t despair quite yet ..... he may have longer than you think.
Urang has been in stage 4 for 22 years ..he has had every medieval torture treatment that existed back 22 years ago to modern times. About three years ago , his doctors totally gave up as no more treatments were available for him. He has so many spinal bone mets , his hospice care is mostly focused on his excruciating pain. He receives enormous doses of morphine and Fentanyl to help keep him comfortable and it seems to work mostly fine. If he gets an especially bad pain spot, he gets met killing radiation to alleviate pain in that spot. Recently they hit a ultra painful spot on his spine and he lost the use of his legs. After a few months of PT he has regained the use of his legs and walks just fine now. Frankly it seems like he still has lots of time left , he is so much more mobile than I am , I’m envious of his mobility. Urang is the poster child for unbridled determination to survive.
No one can accurately tell how much time any of us have left. Unfortunately, based on your description of his condition, it doesn't sound very encouraging.
As hard as it is, try not to think about time. Prepare for the worst, but hope for the best. Continue to be there for him
We are all hopeful that there will be possibly curative therapies to fight this disease. A lot of viable research is going on. Time is of the essence.
He is just so tired and weak. He gets up just to eat, use the bathroom , or answer a few text or return phone calls. In the evening, I encouraged him to eat something, watch a news and travel show for 1 1/2 hour. I am seriously praying that the weakness and tiredness is from the Jevtana (last treatment one month ago in his 3rd and last jevtana cause not working for him) and or tramodal 200 mg per day. When he watches tv, he lays on the couch.
I’m kinda having difficulty wrapping my mind around what, actually, is wrong with him. So, he doesn’t have massive bone or organ damage ??? ... if he did surely he would be on opiate pain meds. Not tramadol. Does he have a lot of soft tissue invasion or brain invasion ? Sleeping a lot isn’t necessarily a cancer side effect, more like a medication side effect. Seems like either of those would be so painful he could never sleep. Has his blood work nosedived ? When I first went on adt I also slept most of the day, always was on the couch and my bed and couldn’t ( and still can’t ) walk. I still experience dramatic tiredness and weakness and still sleep a lot of the time. I eat opiate pain meds like m&m’s because nearly every bone joint in my body is eaten away by mets ... on the plus side ..opiate meds , Vicodin’s particularly, give you energy and they take away all that overwhelming uncomfortableness and can make you think / feel like you are nearly normal ...sorta. He’s eating , socializing and watching TV .... take away his discomfort and add in some energy ... he’s got to perk up considerably. This is where I add in workarounds. I could sleep on my couch or sit and watch TV , sit in my medical jacuzzi... but I can just as easily sit in the big easy chair of my e-trike mobility moped and go for walks with my wife, get some fresh air, go to the store on the corner , ride city hike and bike trails ... be able to do a few things and feel like I’m not relegated to rotting and shriveling up on the couch. It takes zero energy to sit in the chair and let the e-trike do ALL the work. You need to talk to your medical team, clearly he is NOT receiving adequate palliative QOL care if his pain exists at all. Get him the pain management doctor, besides feeling WAY better , he’ll have much more energy and frankly opiates will jack up his mood too. Without knowing a lot more , seems like you can perk things up considerably.
Sorry for your anxiety and pain. The time he has is the time he has. It is nice to learn that others have lasted longer, I suppose. "Lasting longer" while in pain and wasting away is not a benefit as far as I am concerned. Others will see that differently. What can I/he do with the time that is left? Most Hospice programs are implemented when the patient's expected life is six months or less.
Read the poem "The Summer Day" by Mary Oliver. Together.
Hospice is great, my sister passed from lung cancer last year, they came and did the necessary things, not fun. I saw her a week before she passed peacefully in her sleep but I could see it in her eyes that I would never see her on earth again. I saw the same look in my mom's eyes before she passed , it is both scary and comforting to know they are going in Gods hands and we will meet again in heaven. Cherish the time you both have, it is precious. I wish both of you the best in your decisions about the future.
I have posted about this several times. At some point, quality of life has to enter into one's decision making process. We are all going to die, nothing we do will prevent that. Those of us with advanced PC know to some degree on our time left.
That said, to me it is cruel to drag someone to the last day, where pain and a great deal of suffering are all that is left. PC is a terrible disease to die from, I have watched far too many of my friends go in this fashion, down to 80 pounds and loaded with enough drugs to kill a horse. There is NO quality of life left, in fact our bodies are gone, we just have not stopped the machine yet.
I will opt out for ending my life when there is no life left and have it set up do that.
Also, are you keeping him alive in his best interest or your own, as most of us have faced our ending already so our family are the ones who by virtue of NOT accepting our impending demise, are in fact, just setting us up to endure more pain, because they will not let us die in peace and I might add some dignity left.
There are numerous books etc. on letting go and I think that all family members and those close to us, to spend some time on understanding this last phase of life, which ALL of us will face.
You obviously care, but I would ask you to rethink this " keep him alive, at whatever cost to him in the process", instead find out where he is at, and make his last days as comfortable as possible.
Quality of life becomes more important then quantity folks. Never easy but so real.
I am so sorry that you are both finding yourself in this difficult situation. And if I am completely honest with you and as a wife who has lost her husband to prostate cancer a little over two years ago, I can tell you that to me it sounds like you are nearing the end of your journey together and Your husbands live. Especially because of the ever increasing weakness and ever increasing tiredness. You mention that his mind is a little foggy at times and I think this could be due to the pain medication he is taking that also do you to the fact that his body can't handle all the toxins from the medications he has been on. Maybe now old to be a good time, if you haven't already done so, to find the time to voice your sadness about the impending loss, to talk about your feelings and tell each other all the wonderful things that you have done together and been for each other. It is so good when you still have the time to do that. As I wrote in my book went to love means to let go, which you can purchase on Amazon, we didn't have that time because by the time we realised that he was going to die he had become way too weak and wait to unclear to have this conversation. Love and virtual hugs to you! And please keep us updated here.
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Moving on with hospice care.
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Hospice
Mike is on hospice
