When I left Omaha...after doing a treatment with LU-177....my hemoglobin and my platelets have been TERRIBLE....platelets around 6,000 and Hemoglobin around 7 ....that's actually seeming a little better. My Axumin pet scan showed that the cancer was all over my body (in bones) including my skull. I just got the results of my MRI I did of the brain on this past Monday....
I wondered why she didn't call me on Monday late in the day...or Tuesday...or Wednesday...and she just called me around 6 pm on today (Thursday). Turned out the news was SOOOO bad she didn't want to tell me until she did as much research as possible. She said the chances of prostate cancer in the skull...going into the lining of the brain was .05%
She says it will kill me. We are looking into a brain Radiation specialist to see what they will say. Has anyone had this kind of BAD luck? I told her...I'm 3 years past my 5 year mark with Stage 4 cancer...so I'm alive 3 bonus years already....even so, I'd love to live a few more years. This does NOT sound good. Anyone know anything about this? HELP. I am more upset about dying because it means leaving my baby, Sparky who's turning 8 this January 14th...AND leaving my husband (we've been together 44 years on Dec 2nd....because He has Lewy body Dementia and I am his caregiver. I've been doing so great....this bad news sounds...."bad?"
P.S. made a GREAT rib eye for dinner for Richard and I just had a couple bites of it...it was so good, I forgot to photograph it. Big hugs to all and any knowledge about my new "RARE" condition would be great to hear about. It's crazy because people keep telling me they can't believe I'm 64...let alone stage 4 with cancer...LOL.
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I'm so sorry to hear this and my thoughts and prayers go out to you and your family. My husbands also went to his brain and we didn't have any clue it was there and then he started having seizures. I know they say it's rare and why we never really was to worried about it when it showed it was in bones at base of skull. But then again I've read from other wives where it was also in their husbands brain.
This is what they put in his report.
3. Up to 12 mm thick left frontoparietal dural enhancement and some associated hemorrhage and suspicious for dural metastasis. There is some underlying leptomeningeal enhancement in the same area suggesting potential leptomeningeal carcinomatosis.
Hello Greatjohn, Thank you for everything you have taught us over the years. You are an inspiration to many. The terrible news from your oncologist that you shared with us on Remembrance Day (Veteran's Day) comes as a huge shock. We were all hoping for a better outcome. The results of your MRI scan now puts you into the hearts, thoughts, and minds of so many. There are people in this Health Unlocked community that you have never met and probably never will. However, we all enjoy your food pictures, laugh at the antics of Sparky, and admire the love you share with Richard. Take care my friend.
I have to say the same thing... We have both watched guys join this group and then pass before us. We, luckily, are still here enjoying rib-eye dinners. Sorry to hear of this new development, you didn't need any other bad news... Have them give you a port hole and peal that dude out... I'm planning to be here for a while and want to spend that time with you too. I'm way past the 12-18 mo. I was given to start with after surgery. (my innards were a mess) but my last newer treatment seems to be working, so the 5 yr mark is coming up with many to go.... Hang on and best of luck to you. Life Is Good, keep enjoying it!! Doug
Hi Greatjohn, sorry to hear the bad news. I know you will not give and really you are an inspiration. Have your doctors looked into Proton Therapy, maybe its a nonoi but I thought I might bring it up. Keep up that spirit and ma God bless you!!
Me: I'm falling apart. Can you put me back together?
God: I would rather not.
Me: Why?
God: Because you aren't a puzzle.
Me: What about all of the pieces of my life that are falling down onto the ground?
God: Let them stay there for a while. They fell off for a reason. Take some time and decide if you need any of those pieces back.
Me: You don't understand! I'm breaking down!
God: No - you don't understand. You are breaking through. What you are feeling are just growing pains. You are shedding the things and the people in your life that are holding you back. You aren't falling apart. You are falling into place. Relax. Take some deep breaths and allow those things you don't need anymore to fall off of you. Quit holding onto the pieces that don't fit you anymore. Let them fall off. Let them go.
Me: Once I start doing that, what will be left of me?
God: Only the very best pieces of you.
Me: I'm scared of changing.
God: I keep telling you - YOU AREN'T CHANGING!! YOU ARE BECOMING!
Me: Becoming who?
God: Becoming who I created you to be! A person of light and love and charity and hope and courage and joy and mercy and grace and compassion. I made you for more than the shallow pieces you have decided to adorn yourself with that you cling to with such greed and fear. Let those things fall off of you. I love you! Don't change! ... Become! Become! Become who I made you to be. I'm going to keep telling you this until you remember it.
Me: There goes another piece.
God: Yep. Let it be.
Me: So ... I'm not broken?
God: Of course Not! - but you are breaking like the dawn. It's a new day. Become!!!
~Author John Roedel
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I thought this was a good way to look at life.
But I am very sorry to hear about your news. Hopefully Radiation Specialist can help.
I’ve got a met in the bone in the back of my eye socket. It’s the one spot where I have not yet done targeted high dose radiation. Shit brother it’s just how this thing goes. We are all playing the long game.
May it be as long as you want to travel and when it’s time, quit fighting the current and float with the river. Stay strong!
I watched a video seminar yesterday Cancer Research Institute -- these are 2 of the founders of the mRNA Pfizer vaccine Nobel prize winners -- they are doing clinical trials for cancer and have already treated over 200 patients ... they are already on a phase 2 study -- they make a vaccine unique to your cancer in less than 45 days -- their made 8 versions of Covid -19 vaccine within 24 hours ! of receiving the DNA code -- it is the future --- they say in 5 years they think it will make great advances in all types of cancer ..
This happened to my father that had the same cancer as me, wish I could say something positive. All i got is he had it 6 years ago and there have been many advances in this area
I’m so so sorry to hear your latest news. You have provided so much help, hope and optimism to so many on this site.
I just hope that the brain radiation specialist can offer something that is of benefit to you and soon. As ever I’ll keep you in my thoughts.
Hugh
Take it day by day. Surround your mind with clean, flowing thoughts. I hope you have made some sort of arrangements with hospice, might come in handy in terms of living longer. Always remember “There is no finish line."
You are so honest and brave ! Love and prayers greatjohn.. APC is a friend to no man . I feel that you’re a great friend to us all. I’m greatly saddened wtf? Man I hate pc . Love for you ❤️
So sorry to hear about the higher anxiety your recent test results have stimulated.
As you may recall, I went on in-home Hospice for my double terminal prostate and melanoma cancers on Oct. 1, 2021. For me, after 8 years of all kinds of tests and treatments, it has been a sort of paradoxical relief to have stopped all the active cancer treatments, plus all the diagnostic/staging imaging procedures, plus all the disease-tracking lab tests, etc. (I do still worry sometimes about exactly how the "details" of my ultimate physical decline and death might play itself out.)
Another thing I'd like to mention is that part of my experience with Hospice included a detailed in-take interview with an assigned Social Worker, with follow-up visits as necessary, for both me and my primary caregiver.
I think that all unresolved "family" issues such as those involving children, family pets, spouses or relatives with special needs, etc., etc. would be primary things that a Social Worker could help "drive out into the open", sooner rather than later, and could help in making connections/referrals to others who specialize in helping families before, during, and after the end of life.
For me, there has also been some comfort in "tying up" some of the loose ends, and "letting go" of all sorts of "details" and records and "things" accumulated over a lifetime, but which no longer really apply during the time I may have left to live.
I am sorry dear John that you received such bad news. I was hoping you were getting better after your previous posting. You came back from Omaha with little hope and got surprisingly better. I wish the radiation specialist finds a treatment to prolong your beautiful life!! As we say, I am crossing my fingers for you! And please don’t forget the pics of the food next time. Here is one of what I just made: couscous (this is just the meat and vegetables). I still have to steam the couscous pasta itself.
I almost hate to bring this up because it gets kind of dismissed here, and also because I cannot know what it's like to walk in your shoes, but maybe it's a Hail Mary pass, like when you've got nothing left to lose, and FWIW (maybe nothing, maybe something): mebendazole.
I'd love to know how to cook a good ribeye, I wouldn't even know what to look for in a ribeye. Every once in a while my wife craves red meat, so I'd like to be able to make it for her, and screwing up a ribeye would be both expensive and really disappointing.
Bless you, you brave indomitable man. We should all have your courage and persistence.
Sounds somewhat familiar i have skull mets, not sure if in the lining. Radiation can possibly be done, i was told by rad doc, i am leaving sunday for Nebraska i am somewhat nervous, considering my body aches all ovef and my Energy is very low.i want to live as well, i am 5.6 yrs into stage 4. Its hard to imagine when that time comes. I will be thinking of you. Message if you wanna chat.
My doctor is looking into a radiation specialist who specializes in the head and brain. This is unusual for Prostate Cancer, but we are hoping he will know what to do to the cancer that has gone to my brains lining. All the best to you. Mice France in Nebraska let me realize that there are quite a few very good doctors there. Good luck 🍀 GJohn
I dont comment a lot on this site, but your humour and great outlook always makes me smile. A lot of men on this site are so well informed about PC, I am a registered nurse and have learned so much on this site.My husband is going into his fourth year, with extensive Boney Mets and lymph heavily affected. I noticed also on his bone scan initially that he has skull metastasis. He sometimes has tender spots on his head.
We have exhausted all treatment, now just having the three monthly Eligard, on cannabis trial and opioids for pain. Lower back pain became severe, commenced Dexamethasone, while waiting for some spot radiotherapy. His deterioration generally is now very evident , brain foggy, memory poor and general mood very flat. Sleeps a lot and becomes very fatigued easily.. the Dexamethasone has caused the swollen face and appetite increase. We can start to decrease dose come 1 December when he has the radiotherapy.
It feels like this monster is really starting to get fierce. we are trying to make good memories, do more exercise etc, but he really becomes fatigued quickly.
I’m sorry to hear your news, I feel very sad for all the great men here and wherever who are trying to live their best life with this cruel disease.
I am thinking of you, hoping whatever your next step is goes well and keeps you here with all of us
Thank you so much for your kind words and I wish all the best for your husband and for you. Hopefully a nice relax for him and some time you guys can get happy together enjoying life.
😢😢. Just can’t catch a break. That’s awful news. What’s that song say. I’m not afraid of dying ,I just don’t want to die today. Just had my CT and MRI yesterday. Will talk to my doctor Tuesday. Oh how I hate the wait. John never give up my friend 🙏🙏🙏
So sorry to hear about your latest news. Hopefully the radiation specialist has something to offer. I appreciate your upbeat attitude. It sets a good example for me when things start to look bleak. Much Love, Mike
My heart and my thoughts are all about you and all your trials and tribulations in this journey we all take. Steadfast and strong, walking upright through storm after storm... any of which would have knocked down any mere man.
I haven't been here long, but you're inspiring and have provided a beacon in the storm for many of us, providing direction for those who have little visibility to see their way through. You allow us to walk along beside you, to see a small window of your life that you share with us, and we are all the better for it. I only wish I could return the favor, offer some relief to your situation, if even for a time.
You're a fighter, and your spirit rises above that if a warrior to something special, in our past history (humanity) when they wrote about those who've impressed upon people around them as you have, they became legend, and was versed in story, or written word, passed down through generations... Hercules comes to mind... You're one tough SOB, in my mind, beyond human! And I'm not talking about physical strength either!
Keep going, keep that hop in your step. I believe, I know... we are all with you in mind and spirit, wishing nothing but the best, and with positive thoughts and prayers heading your way!
But besides all that, I think I'm going to break out one of my Kansas City Cut - DeBraga - Aged Rib Eyes in your Honor!!!
First, you try lots of things so why not try a radiation process called “Gammaknife”. At SWEDISH hospital in Seattle Dr. Robert Meirer(sp?)does this and another procedure called “Cyberknife”. I had Cyberknife for Stage 4 cancer in January 2019 and we got the areas we wanted. I am sure other radiation docs do this in the US if you want to Google Gammaknife. I still have a PSA of 17 and now on Zytiga, prednisone, Orgovyxx, and Zometa…..no sweat.
You are still around and the Lu-177 was a good move…….this should be next. I just celebrated my 17th anniversary since my first treatment for prostate cancer with something called cryotherapy……….was just hoping for another 2-3 years in 2004…….what’s to lose?
Hey Mike. Just read your post re cyberknife with Dr. Meier. My husband was diagnosed w/stage 4 PC late in 2020...had cyberknife (two rounds) and has since been treated with Lupron, Zytiga and prednisone with great results. His oncologist (Dr. Zhao) has now planned on taking him off all medications at the end of Jan. 2022 to start a "vacation". He feels this is the only way to tell if the cyberknife was successful and to give him some time to recover and to "feel better". We believe in science and in our fabulous Swedis team, but I do have to admit the vacation protocol makes me nervous. My husband is 81 and doing very well. Have you experienced a vacation?
Your words have forked lightning here over the years. Time becomes meaningless as your journey continues. You travel on a road of love, hope and joy that stretches into eternity. You are in my thoughts.
Great John, sorry for the news my brother. Sending good vibes and hoping your team of doctors devise a plan to put the brakes on this stat. You are such a positive force here and are in our thoughts collectively. May you continue to defy all odds and enjoy every moment with Richard, Sparky and friends. Love your meal plan too, keep the photos coming🖖🙏
If I were you I would call or message them and tell them your situation ...Ask them to call your doctor and tell him how to get the vaccine -- tell your doctor to follow up also... keep us posted
John,If you close your eyes you can feel all of us taking on a bit of your sadness and let yourself feel the energy of hope and love sent your way.
So far you have been a wonderful exception for APC so continue to believe in how good you feel and look. That’s your present state
greatjohn, while I'm not a proponent of unconventional therapies and consider the vast majority of "eye of newt, wing of bat" therapies typically do nothing more than take advantage of people in their darkest hours, are you at a point where something, anything is worth a shot?
I'm hopeful for any conventional treatment you can find, consider the Joe Tippens Protocol.
Again, this is not something I would normally undertake personally at this point in my life but will when all other options have failed me. I understand that desperate times call for desperate measures and I'm being selfish when I say I want you around awhile longer, but I'm not alone when I say that.
You already understand your chances of survival with or without radiation therapy. Consider this?
I know there are several sites addressing this including the one from Tippens.
I tried this for several months and did not get a positive response. It did make me a little nauseous of eating. Now I think it would really be bad to try again. But thanks!
yes I will add I am not medically qualified to offer any advice and simply pointing to a direction I might go myself when the time comes. I wish the best for you.
I have sent a message to tell him what’s going on now with this new cancer on the brain to see if what he was thinking about could still be possibly helpful for me.
This is a terrible carousel that we get on and my wife couldn’t belief the 5 year diagnosis with Stage 4 in my case. You face everything with such courage and manage to post with such sensitivity and humour. You must worry so much about your husband of 44 years. I hope there is the prospect of some treatment such as radiation to slow the progression of the brain cancer. What must be going through the minds of you and your husband. You are a very courageous man.
I must admit..... that on our wedding anniversary I bought a ring for my wife and called her into the kitchen. When she entered I got down on one knee in front of her and asked: "Would you bury me?" She replied "You silly fool, you forgot you're going to be cremated", anyway she kept the ring.....
I'll just re-post this poem because I can't repeat what initially came out of my mouth when I read your post...please know that my thoughts and prayers are with you and your family, please know that Sparky has a guardian angel in Texas if ever need be...peace, prayers, love and light!
My Dad died from prostate cancer metastases in his brain. That was in 2005. Medieval time vis a vie the treatment opportunities you have now. He lived several months after the imaging. He was lucid and, apparently pain free right up to his death. I hope knowing that is helpful for you.
Thank you so much for that information. I have thought that this might be a less painful way to go FaceTime things I have been reading. My doctor is talking to radiologist who specialize in the brain to see if we can do something to slow down the process. Thank you again! John
This will obviously sound crazy but one Doctor who had incurable cancer and given four months survived by diet by eliminating all carbs. Unfortunately that and prayers are all I have. Respectfully, Jack
I am very very sorry to hear this news. I think everyone is afraid of death in some way. It could be a fear of the unknown, a fear or the pain or a fear about the consequences on your loved ones.
I don't know if your oncologist gave you a timeline but for me, the most important thing is to focus on getting care set up for your husband and Sparky. That is something that may put your mind a little bit more at ease to know they will be taken care of.
Beyond this, I have no medical advise. I will say that this sounds like a time to seriously consider the benefit versus the consequences for any kind of new treatments that may incapacitate you or diminish your enjoyment of your remaining time with your husband and Sparky.
This is a time we think we have planned out but I think it is mind numbing and world shattering to be told there are no more treatments and that we are going to die. Please give yourself time to process what is happening, see your therapist or get one if you don't have one. One that specialize in such conditions. Check with psychology today and go from there. I found a good therapist.
Live, love and experience all that you can for as long as you can and make sure your loved ones will be cared for when you are gone.
Please continue to post and let us know how you are doing. We are with you and your loved ones always. I wish you Zen moments between the anxiety and fear to help you refocus on the NOW. Be present and accessible to all you can experience.
Hi GJ, Such tough news to get. My heart aches for you. I know you are a fighter. Just a thought, but my brother saw Dr Dimico at Dana Farber in Boston. I have never met a more amazing man. He is world renown and has an incredible bio. You may want to get in touch with him. His staff is also top notch. dana-farber.org/find-a-doct...
thank you so much. I'll check him out. This cancer situation is only appx .05 percent possible so there are not a lot of prostate cancer specialists who would know how to deal with it. My oncologist is trying to speak with other "brain radiation" specialists at Sylvester Cancer in Miami.
Here is a mRNA trial that is currently open for cancer ---
Safety, Tolerability, and Immunogenicity of mRNA-4157 Alone in Participants with Resected Solid Tumors and in Combination with Pembrolizumab in Participants with Unresectable Solid Tumors
The hardest part when I think about leaving this earth is who will care for my daughter who cannot walk or talk but has a great quality of life because of our love so my heart hurt hearing your fear of leaving your loved ones. I wish I lived closer to offer my support but I'm sure you will put everything in place as I will for her. We all think about death even when we are not ill it is inevitable I guess although I hope not tomorrow or the next day. How could you have left such a mark on me and everyone here, how could we all love you and want to hold you tight. You are such a special soul I pray with all my heart for that miracle, the hope,the treatment that will keep you here. Praying for better news
Hey John, have been travelling up in the Bluridge Mountains of GA for the fall colors and some great hiking (short hikes that is). Just catching up to your post now. So sorry man. Shiiiza, this disease just keeps throwing buses your way!If you go outside w your pup tonite (I think you are in FL like me), look up at the sky and take in a deep breath…..in with the good air, out with the bad, in 3-5 second intervals. Send blessings to those you love, and those you have loved. In with the good air, out with the bad. Think of all the things you are grateful for. Nice and relaxed now, you will sleep well, and know you have done what you can do. Be at peace with your journey, and if you have strength, look at that Pembroluzimab mRNA study. If you go down, go down swinging.
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My brother has advanced prostate cancer
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Lance Swinehart 52 years old with high-grade prostate cancer with Mets to my bones.
