Just thought I would give you a general update on Paul's situation.
Tomorrow it will be two weeks since he came home from hospital. He is getting stronger every day. But he is still feeling tired most of the time, even in the morning when he wakes up, and the shortness of breath is still there occasionally but not as bad as it was. We spoke with the physiotherapist who gave Paul breathing exercices to do when he was in hospital and she says it is normal that he feels breathless still and that he should try to do small things standing up or walking around without overdoing it. We were out every day for a bit over these past few days and he is enjoying it. He will get bloods done on Tuesday and they will then decide whether or not and when he can go back on the Chemo.
It is strange. On one hand I know that we need to continue with the Chemo because of mainly his liver mets and to be able to control the cancer. On the other hand I feel so sorry for his body having to go through this again. It is so terrible that there is only this one treatment option which is mainly to prolong his life. But maybe, just maybe, it will work well for him and he will continue to be okay for a long time.
Best wishes
Mel.
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MelaniePaul
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You are so strong and brave. And Paul is, too. I guess we fight as long as we can to get every bit of life out of our bodies that we can.
I pray you and Paul have much time left ... and that you enjoy and treasure every minute you two are together. Each day offers a new opportunity for new, special memories. 🙏🌈
Thank you, James. Appreciating every moment together is something that we are really trying to do and it works for most of the time. We are always aware that we mightn't have much time left or, to put it in a better way, that we don't know how much time there is left, so we enjoy the moment as much as we can without worrying too much about the future or wishing for something else.
Best wishes to you.
Mel.
Everything about APC is difficult. The only option left.mel thats a horrible position for a spouse to be in. Don’t have answers . Just prayers... I’m sending you lots of love... you have great inner strength. God bless you for such love forPaul. In this respect A lucky man... Take care. I’m so happy he IS home...
Yes, it is a very difficult situation to be in for sure. Sometimes I feel it is more difficult for me than it is for Paul in the sense that he is dealing with the immediate illness, he is often caught up in the way he feels or in trying to be as comfortable as possible and, anyway, he is not like me who would sit down and think a lot about the situation, as he would say, "I just want to get on with it", whereas I am often thinking about the cancer and what it is doing to us and I am looking for other treatment options and all that. I pray every day that we will have a lot of time left together. Paul is really a fighter. And maybe he will surprise us all with good results from the next Chemo. I just don't want him to suffer any more than he has...
Dear Mel, tears in my eyes as I read this... you’re correct. Us men have this and it’s a challenge to our sanity while suffering while ‘noting that this life for us is fragile and brief.. I don’t understand suffering.. I’m praying for some relief of pain and misery.. You dear woman need a month a canyon ranch and a vacation. Please don’t go Dow,n with him.Yhis is what my wife does. If I’m a jackass, mad, or complaining of our daily pc bologna .. It wears both both parties down. I’ve said to SHahrnoosh “save yourself”. Go live your lifeand forget about me I’m screwed. Well, that ain’t going to happen with her or you. She does suffer as much or more where I’m in the rath of Khan mode. Fortunately with Sam-E and time adjusting I’m much better as of recent. Thank you for always encouraging me... TAKE CARE ... IM PRAYING FOR YOU BOTH..
I too have tears in my eyes when I read some of the posts here.
I think Paul and I are a very strong team. Our love is really what helps us through this. It is this love that makes us go through the challenges and it is the same love that makes us enjoy life whenever we have the opportunity.
Yes, it is very difficult to live with the feeling that this therapy Paul is currently on is, from today's point of view anyway, his last treatment option. It feels like a lot of pressure like: okay, and what do we do if this Chemo stops working? What do we do if this treatment can no longer be used? Will it happen one day that we come together with the doctor and they tell us we have to stop treatment and that there is nothing more they can do? That is really a horrible thought. At the same time, though, if more and more treatment means more and more suffering for Paul, then I would say: Okay, stop the treatment and enjoy whatever time you have left.
But, hey, he has always tolerated the Chemo very well. And, hopefully, his next session the day after tomorrow will go ahead as planned and all will be well.
We were at the hospital today and Paul's bloods are fine except for the CRP which is back up from 40 on the day of leaving the hospital to 96 as of this morning. We are not sure what it means. Hopefully it is only a left-over from his recent infections. But why would it have gone up again? I am really hoping it does not mean that there is some infection still lurking in the background...
I cannot imagine a life without Paul. And I don't want to think of that right now. Who knows, maybe the Chemo will push the cancer back again and he will have a lot of good time left.
Mel , he’s here now with you. I saw a spiritual drummer at a Baha’i center in San clement ca. His mantra was ,,, that eternity does not start once we’re in the grave . It starts right now. A young man here yesterday is only 40. That’s a transition . over 50 we almost deserve it, but under that’s a crime.. Take care this evening. Hope the birds are chirping where you’re at in the morning. Good people suffer.. Mom says there is a reason for everything. I agree. I believe that these reasons are not normally known to us mere mortals. We are all on the same voyage... hope he can enjoy the views a little bit again and find peace with himself first , then you , then the world. I m far from total enlightenment myself . Good music brings me joy. One day at a time sweet Jesus!
Happy to hear Paul is gaining some strength. Having been in your shoes I totally understand the conflict of wanting the chemo to fight the mets but hating what it does to the body. Thank you for the update - I think of you often. Many prayers for you and Paul
Still in limbo myself, had two surgeries this week aiming at improving the next ten years. Have no idea if I have another ten years, but planning for it. Tests and scans+ blood work in June, then maybe a better idea of what lies ahead. Wait and see and juggle life.
Wishing you all the best with Paul's treatments. Just plan for the best and run your lives accordingly.
Hey shooter1, Imhad some rough emotional battles for a couple months after my orchiectomy .. I lamented with I’m not a man anymore and I should just check out.. My first 21/2 yrs with APC I was livid with fear and self loathing. And not even in Las Vegas either. I carried suicidal thought in my backpack . Mulling it over time to time.. Talk about destroying my wife. If I did that ? I could never do that to her.. So now I embrace my no - ball membership .. I’m dabbling in practicing daily happiness. I get up and start my u-tube mornings with “Happy” by Pharrell,then. O happy day, lean on me Bill withers, .. Recover well Doug... I’m so much more comfortable , once you recover. Orchiectomy for me is great relief.. and for now no frickin shots.... the spring winds have stopped , somebody turned the oven up and in a week I’m heading to lake vallecito co. 9hr drive.. I invite you up to our small cabin this summer. We’ll be there until the snow flies. if you want a break from the heat. Come on up . Well feed you and sit around the campfire.. peace and speedy recovery to you Doug... Scott,in Tuc..
That sounds awful tempting. Jenny and I may need a break when mid June test Results are in. When do you head that way?? Starting Phys.Ther. today for second operation, VA For foot x-rays tomorrow, oncologist on Weds. Getting tired of the Dr. rat race, but have to get back to work too.
I am sorry to hear that it is sometimes so difficult for you emotionally.
On Saturday evening my husband, when he was looking for something to eat but didn't know what he wanted, said to me that he was disappointed in life. And then later it turned out that it was not only because of the food but because of everything that the cancer had taken away from him, including his normal sexual life. He didn't have an operation, but he has no libido and no energy to be really intimate, and while I say that the most important thing is that we are together, I can understand where he is coming from and that it must make him feel like the lost sexuality is just yet another thing to have lost to this horrible illness.
Please remember that you are still the same person you were before this illness, the same person you always were, and that you are as much loved as you were before.
You touch my heart Mel.. Not many speak of these intimacy issues. But isn’t it true that humans need not sex only but human touch . All of us , it’s a basic need. A premie can die with out that touch. I understand and you understand that the loss of sex is a loss of a form of special closeness and emotions like no other. I’m in love with my new bride . We only had 2yrs before kaput . Then I was down for 2yrs with foley and tubes, no,action or even a sexualthought can be had with urological pain. But now I m o k and she’s in full on menapausal state, she has no desire , i under stand. I tell her , I’ll wait because her menapause will not be long . Mine is permanent. I’m happy with this most precious woman . She looks 33 instead of 55. I’m a lucky SOB that she even talks to me let alone loves me... I’ve been a jackass to her and used her as a sounding board for every bitch and complaint , yelling , punching things , a real mad man . I’m better, good news albeit no guarantees make me think everything is good now . Hope he can find a light in dark days. I’ve been there.. peace Mel 🌅
It makes me happy to read that you and your wife have such a special relationship where you understand each other and stand by each other whether it is in happy or in darker times. That is so so so very important!
The urologist said “ I never promised you rainbows and butterflies. He did help save my life though. Thanks Dr page. Who ever said tha5 life is supposed to be easy? Take it as it comes dear Mel . Yah , without love I could not nor would I want to exist. Paul and I are the same beneficiaries of a great woman’s love.. I Thank you. 57 today , life is good . Thanks Mel ... take care Of Pablo...
Have you looked at Lutetium 177 PSMA Therapy Im in Australia has saved my life I havent done Chemo- its very expensive 9600 au a treatment cycle but easy on the body compared with Chemo Theranostics Australia offer the therapy and Dr Nat Lenzo is the Doc good luck John
Hi yep had extensive bone mets my psa was 5000 when diagnosed hormone therapy took it down to 4 rose to 290 lu177 took it down to 190 and its still falling dont have a current update but i feel very well and am very active etc i would say its under 10 now the great thing about lu177 is you can keep doing it unlike chemo doesnt destroy everything in sight though i know chemo works for some people. Im currently using xtandi which against a greatly weakened cancer is doing very well - no side-effects. I had some side effects from the lu177 because of extensive bone mets bone flare - pain but wasnt too bad i kept working etc it also affected my heamoglobin but all good now. Its a fact 97% of men become hormone resistant from hormone therapy lu177 offers real hope for longer term survival until the beast is nailed should be a frontline treatment cheers John
John, I am happy to hear that Lu177 has worked so well for you. I have only heard good things about it so far. But, as I say, this goes only for bone mets as far as I am aware.
Good luck to you, I am glad to hear you are well and active and enjoying life.
Yes, we have looked at that many times. But >Paul's main problem are the extensive liver metastases not metastases in the bones, so they told us it would not be that effective for him.
Hi MelainePaul have you spoken to Nat Lenzo at Theranostics Australia- Lu177 does knock out organ mets so does opdivo I think- but the men ive spoken to have had extensive mets in spots other than the bones who have really benefited from the PSMA therapy cheers John
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Interesting, I will look into it again so.
Update and thank you! 
PSA from 23.1 to 80.1 in 5 weeks
Xtandi alongside chemo for neuroendocrine cancer? 
Update on my father and questions regarding liver mets. 
Update: NEPC Treatment 
