I'm posting under my husband, Alvin again. It's gone from bad to worse. Right arm is totally paralyzed; walking, even with a walker, is very difficult and balance is way off. Can't do anything himself, even get up off the couch, dress himself, etc. Can somewhat feed himself with his left hand/arm - but that arm/hand doesn't work very well either. Pain is excruciating in his arms, shoulder and neck. Currently on fentanyl 12 mg patch and 8 Hydromorphone every 4-6 hours. Although the combination is not doing much for the pain, so starting Pallative Care on Wednesday and hopefully they have some additional pain solutions. Doing 10 sessions of radiation to try and slow down the tumor on his spine and give some pain relief. However, it is a complicated radiation scenerio because of the radiation he got back in 2012 to the same area. Just got a wheelchair ramp put in so I can get him to his radiation appointments, life has changed ... I feel so helpless sometimes.
Alvin's wife - update: I'm posting... - Advanced Prostate...
Alvin's wife - update
Sorry I wish I had more to offer than prayers. Hopefully the Drs can help your husband he must feel blessed to have you, because he is.
You are doing it one day at a time alvin735’s wife. You are doing it.
It is hard to read your post . I hope his doctors can Give him some relief. Most of all I wish there was something I could tell you.
Sorry to here what your husband is going through. I think most of us had some bad times where we just wanted to die it because the pain would be so bad. Is it nerve pain? With his extended mets I hope there will be something out there that will start working for him. In the mean time maybe spot radiation and some some sort of rehabilitation for his arm. The thing is if he is a fighter, he will get through this. Again most all of us had some bad times.
Sending my positive thoughts your way.
I can’t imagine. Your in my thoughts, I wish you all the best and some relief.
So sorry that you & your husband are going through this. My dad was diagnosed Feb 19 & was coping well until 2 weeks ago. He was independent & driving. Now I’ve moved in temporarily & essentially doing everything for him. As you say, life has changed. I too feel your helplessness as it’s so hard to see a loved one in pain. I’m relatively new to all this so have no tips in terms of treatments. Also we’re in Scotland so treatments seem to take a different route. I’m just reaching out to let you know that I understand how you feel. It’s easy to say but I’m trying to just take one day at a time but I’m sure your already doing that. Please feel free to contact me if you want to talk / let of steam / anything. Wishing you & your husband all the best.
Thank you. I'm not "new to this" as Alvin was diagnosed G9 back in 2012. So, guess we really need to be grateful that he had approximately 6+ years relatively pain free. Just the last couple of years have been a challenge. I have been very actively working with his doctors to try and get something to help his pain. He has a great Oncologist, one that lets me text him in the middle of the night if I need to .... Yes, one day at a time ..... hugs.
Has surgery been discussed? My brother had neurosurgery that reduced his pain by 95-100%. Sadly, he delayed the surgery, because his spine was damaged due to the tumor compression.
He did surgery back on May 7th .... had many complications and was in ICU for 6 weeks. They were not able to get all the tumor, and since then it has decided to use that space that was "opened up" to grow and really attack all the nerves surrounding it. He is much worse off now than before the surgery. I'm glad your brother had a good outcome, Alvin did not.
May the Grace of God lift you up in these times.
Saying a prayer 🙏 for help to come your way.
Hope and prayers the doctors can provide pain relief. Very sorry this is happening 💕💕💕
Sorry to hear that you all are going through this.
So sorry
Hi Alvin’s wife. I can’t add much except to join the chorus of well wishers here ..... for both you and Alvin. Clearly your husband is struggling and us stage 4 guys here just cringe because that’s “ us “ you are posting about too. But , just as important I think, is both the physical and mental burden you are shouldering. I agonize not just for Alvin but for you as well.
I’m thinking good thoughts for both of you ( transfer of merit ) ... hoping that the doctors can lighten Alvin’s discomfort / pain load .... and that you can find at least a little bit of solace in all of this for yourself.
Best wishes 💪💪💪
We met with the Palliative Care NP today. She will be reviewing Alvin’s pain meds and upping the fentaynl patches and also the Dulirad so hopefully that will give him some more pain relief. Started radiation yesterday and expecting 10 or so sessions. Also prescribed something to stimulate his appetite. Walgreens doesn’t carry it so they have to order it and not covered by insurance. But, it is what it is. I’m hopeful that will get him to start eating. Thank you all for your kind words and prayers. It is nice to have a place to express my thoughts and fears and not burden our kids. 
As others have said, I wish there was something that I could say, offer or do that would help both you and Alvin. Having this forum is a blessing. It gives a place to share and care without and fear of what others will say or think.
I add my prayers and my hope.
May our prayers and best wishes bring Alvin a respite from his current pain and suffering. God is on his side....
j-o-h-n Thursday 08/06/2020 8:16 PM DST
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