As some folks here may recall, I'm the guy who started as very metastatic almost 8 years ago in Nov 2013 with a PSA of 5,006. I also developed metastatic melanoma a little over two years ago. Details about my treatments and various dates are in my Profile.
The most recent double chemo tried for the melanoma really beat my body down, and I can hardly walk. Both of my advising specialists have no treatment options that they could give me in my condition, and considering the risks/benefits/efficacies.
Recent scans still show progression of the internal melanoma, with no good systemic treatment options remaining, except perhaps just a last ditch surgery to only resect only one area of one of numerous "mets", or a rechallenge of Keytruda - but not yet, considering my current condition.
I've also been on Xtandi for a long time, and my PSA most recently has climbed to 713.9. My PCa specialist also concurs that some other 4th line PCa treatment would not feasible now, considering my current condition/comorbidities, and that I should stop the Xtandi (and any of its long term side effects).
Accordingly, I'm now working to arrange in-home Hospice care.
This is a momentous time that we have always known would eventually come.
The daily/weekly focus in our lives is in a time of transition. Many of the details of the future are impossible to know.
Just wanted folks here to know what's happening now.
Written by
ctarleton
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I’m so sorry you are out of treatment options. You’ve been through a lot of different treatments over the years and then to develop melanoma on top of prostate cancer. I hope you have loved ones in your life that can be with you now. Thank you for all your comments and contributions here as I’ve read many of your posts. Thank you for letting us all know what is going on with you. I hope hospice keeps you pain free. I’ll be saying a special prayer for you tonight. God Bless you. 🙏
Thanks, Avanat. I've always tried to contribute here as best I can. We may not be cured of our disease(s), but we can still be healed in many ways. I appreciate your empathy and compassion.
Charles, Thanks for the update. Many of us had been hoping that you were focused on the invasive Melanoma and were too low on energy to post regularly.
I've told you many times how much we looked forward to your advice. As a neube that started with PSA +1300 and other labs out of whack. Through internet searches the number of people over 1,000 were few indeed.
At my first support group meeting not only did I find a guy over 5,000 but he had been there over 5 years and gave me so much hope. He freely shared his journey and thoughts.
Maybe I can do this if he can. We all know our time is likely shorter and somewhat more difficult than some. But hey, if it was easy I might not have met such a remarkable human being.
Thank you for your advice and friendship. Our thoughts are with you and your family.
"At my first support group meeting not only did I find a guy over 5,000 but he had been there over 5 years and gave me so much hope. He freely shared his journey and thoughts."
I had the exact same experience, and that guy was Charles. When I was first diagnosed, I felt the most profound sense of being alone that had ever felt. After meeting Charles at my first support group, for the first time since diagnosis, I didn't feel alone.
He has been a wonderful, knowlegable support person, big brother and mentor for me since then. I'm hoping to be there for him like he's been there for me. That's a tall order.
Wow Charles..... it's been a long time. I have some tears in my eyes for what you are going through..... as you were always there when I needed help or encouragement. When you have to leave, the stars will shine less bright. You're an AMAZING WARRIOR!
Thanks Jackie. I remember our earlier posts and replies. Yes, things so often do get better when we share our tears for one another.I like your reference to the stars. Astronomy has been an interest of mine all my life.
All things cosmological are indeed awe-inspiring, and keep our preciously fleeting lives in perspective.
Yes Charles, they are so beautiful when they light up the sky. I was always fascinated but only know a handful of names up there. Perhaps I'll name a star 🌟 I always wish that none of you were a part of this group.
I read your post just after coming in from an early-morning gaze at Orion coming up above the trees. I am looking forward to some cold - but clear and beautiful - nights over the next few months.
Perspective, indeed! While I am saddened, I completely understand your narrative and have always appreciated your posts. I wish you peace and, of course, I encourage you to "Keep looking up..." - Joe M.
HI SISIRA!!!!It's s0o great to hear from you! I am doing good and Lg is better than ever health wise
I am now caregiving my recently diagnosed.. best friend and she's my Ella (doggie/ daughter) who has aggressive, inoperable carcinoma tumors on her liver and kidney. She's my heart ❤.
I s0o much hope and pray you are doing so well. Thanks for making me smile.
What a heart, full of compassion you have Jackie! What a tireless and wonderful care giver you are ! I am perfectly OK.All the blessings showered upon you before
I give you a BIG HUG that will expand your heart more 💗.
How one kind person, can make someone feel...... is remarkable Sisira. Thank you from my heart. We need so much more kindness in the world and everyone would be happy❤
Darn. This stupid disease reminds me of the scene in Butch Cassidy and the Sundance Kid, when they just can’t shake the posse chasing them. And they say, “Who are those guys..?” I pray you can find a way to hide out from that posse a little longer and find some joy in your remaining days. Thanks for your great contributions here.
Hi Charles from across the pond in England. I have just been reading some of your past posts. Thank you for your intelligence, humour and the positivity you have shared. You mentioned in one post that you were riding 2 horses and if I may say so, you have been riding superbly. I just realised, it's the people like Great John and yourself plus all of the others in here that make the USA so great. Take care and enjoy your family, give your wife some extra big hugs. Hoping that you will keep on riding for a while yet. Love and prayers. Graham
I am saddened by your post but then happy that you beat the odds for so many years! I have enjoyed talking to you on private messenger. Your wisdom and experience have helped me immensely! You are in my prayers.
Charles, thanks for all your posts and wisdom. I just wondered if you’ve ever read or been told by doctors of an association between PCa and melanoma? About the time I was diagnosed with t3bN1, I noticed some skin changes that appeared odd, such as two large moles that popped up out of nowhere that may also be pre-cancerous judging from the color and asymmetry.
I happened to have a history of melanoma dating back almost 20 years, when I had some surgeries around my external right ear. Earlier than that I had some suspicious skin spots removed. In the days before sunscreen I got repeated, skin-peeling, sunburns in my youth.I had a Mohs surgery for an area on my forehead 3-4 years ago. In my anecdotal case, I don't see any strong connections between my prostate cancer and my advanced melanoma.
I'm so sorry to hear this. That happened to a friend of mine - he successfully treated his N1 PCa only to succumb to melanoma. I hope they are able to keep you comfortable.
Thanks for the well-wishes, Tall_Allen. I also thank You for all the very good work you do here and elsewhere on behalf of all advanced prostate cancer patients.
Oh man. I too have been a I guess a secret admirer of you. With my 1600+ PSA at DX etc. you are one of those few here I've always gathered some hope from. Its true that internet searches show PSA's only as high as 500 with dire predictions as I found in my panic immediately after DX.On top of that you have just plain been a great contributor in all ways (science, practicality, and emotional support).
You seem to be holding together. I think I can do the same when the time comes except for knowing what my wife and son will go thru.
As trivial as it may seem I hope you find peace during this transition. The passing of my mom in hospice and a couple close friends over the past 10 years I thought had brought me closer to knowing what to say but I still cant find words.
Thanks, CAMPSOUPS. Peace to you, too. Not to worry so much about finding the right words. Sometimes just being there for one another says more than a thousand words.
Charles, Thank you for many posts, and good spirit. I hope you find peace, love, and calmness once you are off all these hideous chemicals. This is a time for reflection. Keep the attic open as you never know what good research may come along next week. Your mind is a powerful tool. Set it free to heal your body and buy you more time. Cannot imagine what your Family must be going through right now. Breathe deeply. Relax. Enjoy these moments. My very best to you for an extended level of time in this life,
You've been so helpful to so many men and their caregivers on this site, ctarleton, including sharing this sad news. It must be difficult to fight battles on two fronts--your melanoma and your prostate cancer--so many drugs, doctors, treatments. I hope you find painfree peace on the next part of your journey. You've been one of those people who've made Health Unlocked so valuable. Thank you for that.
Dang …. It’s hard to say much. I escaped hospice once already, I know what inpatient hospice meant for me, I suspect you have similar feelings … dunno you that well tho. I can relate this anecdotal information : my friend Bussman ( his cb name that stuck ) went thru everything… twice … the stainless steel jewelry that adorned his upper and lower spine and skull was impressive. … as was his implanted pacemaker/ defib and his morphine pump. He lasted an astonishing 22 years …but it cost him dearly in pain ..suffering… and trials and tribulation. His name on the group was Urang.
Finally they sent him home to home hospice …kept him comfortable .. morphine pump, fentanyl patches and lollipops ect. … he was a warrior survivor tho … he lasted over three years in at home hospice. He enjoyed computers and puttering around in his garden. He kept most of his mobility ( way better than mine ) . None of us know what awaits us ultimately, but three years was, to me, astonishing and a great example of what “ might be “ for any one of us …randomly. Like I said this is anecdotal but his experience always gives me an uplift as one man’s example.
So sad to know you've reached this time in the struggles of your cancer journey. I underscore all the good words left by colleagues here. Bless you and thank you for sharing so much with us here.
Thanks for your update Charles. Sorry to hear that all options of treatment apparently have been exhausted. Your understanding of the condition and the situation is amazing. I pray for you. 🙏
Charles you are such an Inspiration. I have no words, except how sorry I am. Your post made me tear up. I’m so sorry you have to go through all this. I pray and wish you nothing but the best at this very difficult time. May peace be with you and your family. 💙
"We may not be cured of our disease(s), but we can still be healed in many ways." I am amazed that even with the daunting challenges you are undergoing you are able to say something this profound. I wish you all the best for the transition and send you light and love.
So sorry to hear this. Sending prayers your way. You've courageously fought this devil and you are an inspiration to me and others. Hoping hospice will be pain free for you. God bless you..
My prayers are with you brother. You have done well fighting this terrible disease. I hope you can now find that well deserved peace you deserve. You have helped us by sharing your experience and it is appreciated. God Bless you!
Though I have not personally communicated with you, but judging from what the rest have written, wished I knew you earlier.
Charles, don't give up the good fight as yet though you have come a long way with it. I am awestruck at your handling of your situation that my admiration for you have jumped leaps and bounds. And to read that you have personally helped a couple of the brothers here in support groups, speaks volumes of you. I salute you Sir!
Nothing I can say or add to all the good cheers that have already come your way. I know deep down its not easy fighting this disease burden and ontop of that to contend with another. But if I know you by what I have read about you, you would be able to handle the in-home hospice very well with all our loves, care and prayers plus that of your loved ones and caring friends. My good prayers and silent good wishes I am sending your way. We are all here for you and still rooting for you ❤️
Take good care and my great admiration of you, Sir. Stay strong, Charles.
Thanks, greatjohn. I can understand how the words could be very hard for you right about now. You, too, have really been "living" this reality during the past couple of years. Nobody really knows what it feels like to have a PSA that soars back up into the hundreds - until it happens. Nobody really knows what it feels like to go on 3rd or 4th line treatments, and still have advancing disease - until it happens.
I wish you calm and peace, too, greatjohn. That pure light and joy sounds pretty good!
Hello Charles, I remember meeting you several times at PCRI conferences in Los Angeles. I think the first time was 2014 and there were several times after that. I also remember having dinner with you and your wife. We both had initial PSAs that were off the charts. Nevertheless, we were both optimistic and we went into the PCa battle as fellow warriors. I am so very sorry that you are failing. Your Canadian friend!
Hi Charles, You need to know that you are one of the very few people that I have met since diagnosis in May, 2013 who knew more about PCa than I did. I never got a chance to tell you this but your decision to opt for Xtandi (enzalutamide) influenced my decision to do the same thing. For that, I am truly grateful. You are respected by so many people on this forum. We all wish you the very best! Until we meet again. Peter
You have been through so much. I hope you can have some time with minimal pain. Good luck on your journey
8 years and a 5006 psa . Freaking amazing guy! So much suffering . I agree that for me too In home will be the way if possible? I Had a skin scare recently . I’m out the sun after 60 yrs loving it. You’ve been through the wringer … It ain’t over til the fat lady signs. May you receive love and mercy each day ! 🙏
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