Hi warriors. I proposed to my girlfriend on American Thanksgiving night. She has been there (as a friend initially) since the day of my diagnosis and has never left my side since. I could never understand why a woman would want to get romantically involved with a man with this diagnosis since the mainstay treatments basically rob you of your male essence...but she did. No chance of children due and sexual dysfunction due to the RP. She has been through it all and will be there during these last times right to the end. I don’t think I will be here for another Thanksgiving or Christmas...I just continue to deteriorate every week and something is telling me to get my house in order and all my ducks in a row. I feel terrible that she will eventually have to go through the grieving process but hopefully that symbol I put on her finger will be a constant reminder of what she means to me. We plan on getting married around New Years with just our closet friends there. I’m not giving up but I feel that my end is not too far away. Much peace and love.
Engaged: Hi warriors. I proposed to my... - Advanced Prostate...
Engaged
Have you moved forward with LU177?
I am trying. A trial at UCSF would save me money but I cannot get treatment to at least mid Feb. My oncologist is concerned that the rate that my disease is progressing that will be too long. I could go to Germany but it would be $40000 out of pocket plus travel so looking at Israel and Mexico City.
10000 Euros or less plus Lufthansa. Make you own arrangements. No big deal.
€10000? Where is that? I just received the initial cost for a single treatment in Berlin and it is €20700. This includes all scans, labs, hospital stay, etc. You get a discount for your second treatment which I was quoted approx €17000. I would jump on €10000 especially is that included the PSMA scan and all other scans!
University of Heidelberg. PSMA scan is only 900 Euros. Been there four times.
The love of a great woman can do wonders for prostate cancer.
Congratulations !!
I have done genetic testing twice. I appreciate your optimism my friend but LU177 will be my last rally before letting things progress. It will either be the $40000 out of pocket and going to Germany or a clinical trial at UCLA but that is not to Mid Feb. It’s ok. I am ready. I already feel like U am 90 years old anyhow.
Hey Cleodman!
You are a lucky guy! At least in one area of life. Accept that.
Nalakrats first sentence that women like to fix things--so true.
There is a YouTube video in which Dr. Laurence Klotz at a conference speaks of a castration resistant patient whose family owned a hot sauce company. The patient started dosing 3X daily and stabilized his PSA. It didn't lower the patient's PSA but stabilized it. There was a study done on capsaicin too. The results were that capsaicin killed prostate cancer stem cells. What could you lose? Do you like chili? LOL!
Hang in there as best you can. Former President Jimmy Carter had weeks, maybe months if lucky to live before he was given a chance with something new. You don't know what can happen within even a year.
The "Right To Try Law" was passed. That may or may not be helpful to you.
My best to you and your bride to be.
Currumpaw
Congratulations on your proposal, sounds like you have a great gal there. Going out lonely is probably the most awful thing any of us croakers could have to endure , now for sure you’ll have someone to be there with you .... what’s better than that !!!
APCa guys are amazingly resilient .... we often live WAY longer than you’d expect. thats one thing I’ve learned here on the group. My friend mark was sent home to home hospice .... totally out of treatment options. Now just pain management and keeping him comfortable. It’s been over three years now and he’s more mobile than I am , works in yard, cleans house ... walks etc. and looks like he could just keep on going. His psa up from 18 to over 550 nowadays and climbing.
My first diagnosed medical recommendation was inpatient hospice and here I am 25 months later, living at home ...nadair psa of undetectable for 20 months ... a little ruffled around the edges but still going. I suspect you are nowhere near as trashed as I am ...
The point is not to count yourself out, you are way able to persist far more than you might expect. You might be a little rough around the edges, you might have to pull up the big boy pants occasionally ..... but you’ll hang in there ... willpower now energized by that new loving wife. You got this brother.
Just say’in 💪💪💪👍👍👍
Best of luck with cancer and love your new wife for all you are worth. My wife of 43 years has been at my side for last 3 1/2 years as I battle aPca through ups and downs and never faltered. Love is a wonderful thing, glad you have found it.
Really happy for you, make everyday count, like Kaliber says, you probably have many years of love and happiness together.
Shit.... I was in the same place last year at 49, nothing working and everything getting worse. I too was getting my ducks in a line and going through the process of mental preparation for my transition. Then I found a new therapy and I got better. I was lucky- but there is hope in science so stay open to options. If you could try the LU-177/pembroluzimab clinical trial that could be a good option.
Regardless- drink in each day and love your new bride. Cancer or no cancer- no one knows how long they have.
Peace brother!!
congratulations on the wedding! and, I don't know if this is logical or not, but in some ways knowing that your love is strong enough to get married even in your present situation might make her grief less or healthier in the long run--she will have the memory of the marriage and all that it symbolizes; I hope that may be the case, and I wish you both the best
One question that others here may no the answer to? Does an RP and resulting sexual dysfunction truly preclude procreation?
Schwah
A BIG hug from me, and I'm sure everyone here. You've been unlucky with this damn PCa...you are too young ,but....... embrace this GOOD luck with this wonderful woman, and take heart from the surprising good things that have happened for some guys in your situation. Are you already experiencing BAD symptoms? From the cancer, not the treatments? Just wonder what is your home country? Such a "mixed" marriage might be even more special!!! I speak from experience.....lucky guy married at "old age" of 42!! Others here have already said anything else I might contribute!! A blessing for 30 years hence...so far!!
Bless you
Congratulations to you and your bride. I'm sure the wedding will be beautiful
Cleodman Its thinking like that that doesn't help
Pull your boots on get your back as straight as possible raise your chin and start thinking positive no matter how bleak
Decide today
THIS IS WHERE AND WHEN I MAKE MY STAND
Change one thing everyday
One thing that doesn't help
You have started to take charge
There are people right now working around tha clock and they are closer than ever to a breakthrough drug
My oncologist is optimistic in 3 years
Dying from PC WILL BE A THING OF THE PAST YES WE WILL DIE WITH PC
NOT FROM IT
Has your oncologist suggested to you Cabozantinib plus Keytruda? My father has been on both for the past 3 weeks and his PSA decreased from 80 to 30. God bless you and your fiancee.
Congratulations! The love of a woman is very powerful and does amazing things to both your mind and body. I married the most amazing woman on Oct 3rd. All the best!
Peace and love right back at you.
Congratulations. Enjoy life filled with love every day.
I know it is difficult to have hope when things appear to be going in the wrong direction, I have been there. You must believe you will be around a long time for your wife. As difficult as it may seem, you have to maintain hope, that there is a drug/procedure that will extend your life. Good luck to you and your wife, and congratulations :-).
Bro,
Stop thinking that you only have a short time left! My prognosis as so many of the guys on this forum was very bleak. My doc sat me down after the biopsy results came in and said, "Ron, you have the real deal". Now here I am 16 years later raising hell in Thailand! You and your future bride just have to be optimistic. My best to both of you.
I hear you I really do. I am not a bleak or melancholy person but you have to realize that there are different types of prostate cancer. We all don’t have the same aggressiveness or the same mutations. The only thing that we all have in common is the diagnosis of “prostate cancer”. The scans I had last week show such a dramatic increase in metastatic burden in just 2 months that soon I will either become transfusion dependent or catabolic and it does not matter who you are that will kill you. When I was diagnosed March 2017 I was positive and I continued to work as an emergency physician full time right up till retiring July 2020. 2018 I had no evidence of disease after ADT, chemo, radiation and a RP and we travelled every month to a different country and even went on a medical mission to Kenya and climbed Kilimanjaro. I was physically OK until around July this year when the nausea and fatigue got really bad. I go to the gym to lift weights 4-5 times a week and I hike 1-2 times a week (although I can no longer make the summit of my favorite trail). It is not an easy thing for me to say that I am losing this battle but I made several close cyber friends through this app and others and they are all dead now. They were my age and I know what they were going through and the warning signs of their deterioration. So again I hear you my friend but sometimes one has to be a realist too.
There is a difference between being a realist and a pity party brother . Every single stage 4 advanced brother here in the group is in the same boat floating on the same ocean as you are in some form or other. Sure it’s hard to wrap your head around your life changing so dramatically .... but you , like us, have months if not years left ...its a slow motion wreck right in front of your eyes, ending your your death.
You gonna sit and look at life past , cling to a fading world that doesn’t exist and feel bad or you gonna look at right here and now .... inventory what you “ can “ do today , and pull up those big boy pants and take your new lady out and get busy and enjoy the heck out of life while you can. Remember she will be “ lock stepped “ with you in both mind and spirit ... think of her too ... show her ( and yourself ) you can still smile and laugh and find ways to continue to have fun and be happy no matter how deep the $hit gets. You may not be able to change where your life is headed , and you probably won’t be the guy you used to be ( tho some here are close to it ) but you still can make the most of life right now and make the most of what you have left. ....... seriously ...
Just say’in 💪💪💪👍👍
Thank you for your reply. I am so sorry to hear what you are going through, and let's just hope and pray that one of the new therapies will give you many more years.
Dang good job.... Love the fact that you have someone in your life for the journey! Be strong and Live in the moment... don't worry it will all be fine!
that's wonderful news Cleodman ! ... congratulations ! ... i encourage you to checkout ... envita.com ... envita.com/conditions/stage...
I’ve been to a center like Envita. There are a few here in AZ. I don’t have a problem with naturopathic treatments but the cost really doesn’t justify the actual effects on the disease. Envita has the reputation of completely draining a dying person’s finances knowing very well that death is inevitable. Thank you for your recommendation though. Very kind.
Congratulations Cleodman.I agree you have to be realistic but just as you cannot change the past don't spend too long contemplating the future (easier said than done). Take each day as it comes and make the most of it.
Congratulations to you and best wishes to your bride to be! Enjoy each moment - may however many you have be filled with blessings and happiness! And I will say a prayer that life will surprise you with something good that you can't see right now <3.
-Sunlight
Congratulations on your engagement.
Perhaps you might consider trying some relatively inexpensive complementary supplements that might help.
If you click on my avatar you’ll be able to read my bio and some posts I started about complementary supplements.
I’ve been taking Essiac, which is an old herbal remedy that's been around for almost a hundred years. It's relatively inexpensive and many people all over the world believe it has helped them greatly. (including me.)
I'm the first to admit that there's no scientific peer reviewed evidence showing it to be effective, but I've been taking Essiac together with CBD oil for almost 4 years and I am very happy with my results so far.
I stopped ADT in early 2017 and my oncologist expected my PSA to continue to rise and my mets to spread further. My latest PSA was still quite close to when I was first diagnosed in December 2016 and my latest psma pet scan taken in 2020 showed a marked improvement over the psma pet scan taken in December 2016. My oncologist keeps telling me to just keep doing what I've been doing.
Best wishes to you both.
Dave
Congratulations! 🍾🎊 Sounds like you’re enjoying every moment!
The love, attention, mothering, and hugs from a good woman is the best medicine you can have. Go ahead, give her another hug...right now!
Well 🌜👢🎗⚽🌛 man,
My first reaction was 'DON'T DO IT.'.. But she sounds like a keeper so "DO IT". Both of you have my Blessing...for a long and happy life together.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 11/30/2020 9:35 PM EST
New Year’s Wedding - good call Cleodman!
Hey guy! My then lover and girlfriend married me with tubes out of my kidneys and a foley for our first year of wedded bliss . You are correct my man in knowing that this is Real true love .. you are blessed as am I. I am sorry about how you suffer now . Love came to me I’m the 9th inning of life . Better late than never . I pulled out of a hellish scenario . I hope that you can too . I am pulling for the love for you two to conquer this brutal disease 🙏🙏🙏.
Hi Cleodman
First, congratulations on the engagement.
Second, you’ve got a good partner.
Third, don’t give up on yourself. All will be well.
My best to you and loved one ❤️
Haniff
Peace be with you and all those who loved him. I’m so sorry.