I’m 7.5 years into the journey aged 57 yrs old. I have done chemo, (x3) radiation and Pluvicto. It feels like the Pluvicto accelerated the disease into the whole right side of my pelvis. Scans were ugly and for some reason I have agreed to jevtana as I live for my family. Trouble is I'm miserable and I’m in so much pain despite wearing a fentany patch plus Oxy and now morphine. The chemo aggravates the cancer and causes more pain. How do I try and see through the mist that is in front of me. I’m a very upbeat person by nature but right now im so down and out yet trying to put a positive spin on for the family. I live in CA so i know death with dignity is an option for me down the road. At nearly 58 I'm seeing the end in sight and it’s tough.
Thought I would never say this but I’... - Advanced Prostate...
Thought I would never say this but I’m struggling!!!!
You have a beautiful dog. Thank you for sharing your experiences. It's helpful for people like me who are heading in the same direction.
I don't have any advice for you except, perhaps, the possibility of anti-depressants to help you through this period. I'm not a person who sees pills as the answer to all problems but I do wonder if they may be helpful to you now.
thanks Mark I’m hesitant to do anti depressants so I do use CBD gummies which do help.
Anti depressants work for a lot of people. Getting upbeat most important. Mentally Help you fight the pain. Drugs are good sometimes. Go on and off if needed.
CBD might help some folks, but a 1:1 CBD:THC is worth a shot too.
Topical CBD may be helpful for your pain. In California 1:3 THC is available as a topical oil. (Papa Barkley). 🙏
I’m so sorry you have to go through this at such a young age. You are such a strong loving man to keep fighting this for your family!
My husband has a medicinal marijuana license and takes a variety of gummies… some for energy, some for sleep, but mostly they keep him happy.
Sending you ((HUGS)) and love, and praying that your pain is relieved soon. ❤️
you gottta get the pain under control. Constant pain and QOL do not coincide. See a pain specialist or a palliative doctor. Tell this group where you live and they’ll help guide you to some help. I pray you’ll find some relief my friend.
And Check this site for pain relief ideas lots of posts here
Schwah
will do my friend. I’m seeing my palliative care doctor next week.
I agree that getting the pain under control is a key to outlook and mood. It must so hard to share these things and I'm sure its little consolation to hear that your experiences are helping others who will go down the same path, but its a very honourable and brave thing to do. A beautiful dog as well as family do wonders and our own young lab/retriever/pyrenees looks at me as I used to look at dogs knowing that some day we would be parted, and he has become so protective of me to other dogs since the surgery, and every night since the surgery and the treatments, he is up on the bed at around 0200, reminding me that he is there and that "Hey Dad, its bathroom time". Stay strong and hopefully better management of the pain will mean longer times spent with your family and your dogs.
I’m so sorry to hear of your struggles. I agree with Schwah - do what you can to get the pain under control. This should also have a positive impact on your state of mind.
As for future treatments - I guess the tumour / mets were tested to see if you could benefit from some additional drugs (parp inhibitiors , Keytruda etc)? Did your oncologist suggest any clinical trials?
Thank you for posting a pic of your wonderful dog. Pets are wonderful companions!
Grim stuff comrade. How’s your food regime and have you cut out most/all sugar/starches? Have you tried a fasting/interval fasting regime that suits? Starving a cancer will slow it.
Pain killers without the constipation? … accupuncture/tens therapy may help as will calibrated CBD/THC potions. Narcotics are great but apathy can set in and dilute/rob you of your purpose and intent.
Stay a few steps ahead of oncology. All the very best. B
Its heartbreaking to read of your situation, you carry a heavy burden my friend. I do not have any treatment tips to give you, but please do not make any major decisions while you are feeling down. Best Wishes
Your family probably is pushing you to do what they think you want. I found it helpful to have a family discussion with a professional counselor at the hospital.
Hey there, I have just lost my husband to this nasty disease and just wanted to share with you that the last year of his 8 1/2 year fight was made not only bearable but beautiful and profound as a result of doing a number of plant medicine journeys. Not sure they will allow this on this thread but my husband and I, and later my entire family together did several journeys with a combination of ketamine, mdma and mushrooms that gave us so much peace in our time together and an understanding of our profound connection as spiritual human beings and and that we will all carry that connection forward, regardless of the outcome of his illness. He passed peacefully, wrapped in his family, 2 weeks ago and although I miss him mor than words can say, I know we will meet again and even before that will always be aware of our connection. I know this post sounds batsh*t crazy -I have never been a person who experimented with any of these types of drugs but watched a friend benefit deeply from her experience and was led to explore it…I could never have conceived of these words coming from me a year ago, but I am deeply grateful for the knowing we both gained from our experiences with this medicine. Know that this help is out there if you search for it…so many people could benefit from this. Good luck to you on your path forward. You sound clear and brave and strong. I wish you peace in your battle.
This is beautiful please pm me bc I'd like to know how to get just to see if my dad maybe could get some beautiful moments now that hospice has begun . What a beautiful post . May you forever ♾️ be connected 🙏💗
Flydoggy, So sorry to hear about your husband's passing. Your post isn't crazy, it is full of comfort and hope. We all have to make choices about how we deal with our health, our decline, our loved ones, etc. It sounds like you, your husband and your family made choices that led to a deep and beautiful connection. Thank you for sharing your experience.
Blessings, Ron
Oh NOT batsh*t crazy to me. A friend did a clinical trial at NewYork-Presbyterian/Columbia University some years back. It was for those with stage 4 cancer to help them expand their awareness about death. She had an amazing freeing experience.
Thank you for the courage to bring this up here.
I too live in California. My Palliative Care/ Hospice doctor is probably my main go-to other than my Oncologists. I'm very much like you in that I don't want to take pain pills or uppers to get me back going again. But I've just started. I take methadone three times a day. What he calls little old lady doses. It balances out much of the pain that I have from neuropathy and other cancer and accidents. When I tell him I'm down now to discuss what I may need to bring me back up we talk about that too. I still try to focus and do daily journeys when they present themselves. For those times (and balance need) I make it a point to see him and discuss all the pain and things that I go through then or I forget. Just recently I have started taking Ritalin. But when I'm going someplace with the family and I'm worried about not making it through the day this helps me immensely. I'm in the fine act right now of trying to find a balance. The balance that can slip away tomorrow that we just may have fixed today. If that makes sense? What you have to do is keep finding and going after "something". Some balance of medication will help. Hopefully you've taken your family or a family members in with you to your appointments. Mine has a very beautiful way of being intermediary when I need it. My feelings are known that I would stop everything if the pain got too bad and the disease has started to take me. We all get that fog in front of us. Truthfully your heart I think will tell you when enough is enough. Thank you for sharing your journey and the hurt that you go through. You help all of us when we know how others have felt like yourself.
Michael, such a beautiful message, response and share...
Distressing as I know I too will be in your position at some stage. Im currently 56 years old and almost 3 years into my journey. I have vowed to myself that I will be in control of my end of life. The old fashioned way.
You are lucky to live in a progressive state where end of life options are available to you.
Do what you can to improve your health but know, it is your life.
Look into that dogs eyes . He knows not about time ,nor death as " bad" your dog knows you are hurting though and is there to comfort you . What we can't learn from people ,we often can learn from animals . When animals are sick they conserve energy and use it wisely as you have done all these years . I'm scared with you as I'm losing my father who due to lukemia from treatment didn't do well on pluvicto . Please get your blood checked and if nec get a blood transfusion which might give you a lil more life. I too am on palliative care for disability and the meds are central nervous system depressants so it's natural . It's also a natural phenomena with cancer to experience this depression m you are human and you can try an antidepressant bc it may help your brain combat the palliative meds . It was helping my dad who became suicidal and I had never in my life witnessed him in defeat this way ,so what you are feeling is normal . Even doggies get sad, but he sees all the light in you and accepts your illness. Sometimes animals have a lot to teach us . You've been heard . ❤️❤️❤️
🙏❤💪
Try and be outdoors in the warm weather and enjoy the sea waves if you can - it may be hard but with other possible treatments your health can possibly improve - its trail and error - some are lucky that the earlier treatments are the right ones - you are too young to give up....
The struggle is real and I'm so sorry you and your family must endure this. A frank talk with your family, even though its difficult may bring more peace and serenity. Benediciones a tu familia -and that dog!🦮🦮
db1966, Wow! What a journey, and what a struggle.
Most good hospitals have a pain management specialist. If you haven't seen one, I would recommend that you do make an appointment. Then you can find the techniques that might help to lessen the pain. In my experience it is difficult to have a love for life when everything hurts and your body screams at you with pain signals.
I'm weird, so my regime might not help you, but here are a few of the methods I use in addition to meds:
After my diagnosis I started training my mind for the coming pain. I live in a private spot, so in winter when it is frosty or snowy, I go outside and lay down naked in the cold. I focus on my breathing and on relaxing, then meditating into the cold. This has been great discipline for learning to focus on something other than the warning signals coming from my body. I'm no Wim Hof, but this has really improved my ability to deal with my pain through focus and meditation.
Yesterday when my pain intensified I used CBD oil to relax my brain and body. Then I placed a hand on my screaming hip, and thanked the nerves there for letting me know there was a problem, and gave those nerves permission to relax now that they had done their job. I did this with each hurting area. I ended with both hands on my chest and thanked and appreciated my heart and my entire body for serving me so well for many years. This practice does not eliminate the pain, but it allows by body to shift the pain signals to the background.
I then went outside in the shade and meditated. When I finished, I used my senses to identify 15 things that delighted me (dragon flies, bird song, the feel of sun on my skin, etc.). This, along with the decreased pain intensity, allowed my spirits to improve and my mind to focus on other things.
Pain and depression amplify each other. In my experience, helping one, helps the other.
Anything that helps to improve a distressed person's quality of life can only be a good thing. As you say you are in a quiet spot, not offending anyone and conditioning your mind to lessen your pain, "well done" I say, and whether weird or not doesn't matter if it works. Thanks for posting a very personal tip. Best Wishes.
I think this will help you but I am not positive. It helps me a lot. I have been fighting PC mets for over ten years, and part of my success is due to lycopenes. If you read online a bit you will learn that lycopenes can slow the growth, and even kill PC cells. The pain you sense is caused by the growth of PC cells. Simply consume lycopenes on a regular basis, (many times per day), and you will see that they reduce your pain. Lately I am finding similarly for pomegranite juice.
“Nothing is impossible"....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 07/08/2023 3:32 PM DST
God bless you, brother. Thank you for taking the time to write; that means a lot.
Your post brought sadness to my heart. I'm so sorry for your current situation and hope you can rise above the challenges.
Your words help me to see what life has in store for me going forward. Thank you for your openness. Hang in there my friend.
That’s so tough. You’re young and have much to live for - look at that pups face!
Is there a therapist that you can see or support group in your area? Do Consider antidepressants to help with your feelings of hopelessness. do you take Claritin and Zyrtec prior and post chemo? It significantly helped my husband’s pain. 1 of each daily. Am/pm 3 days prior and for 5-7 days afterwards . Hope you get feeling better soon.
Spot Radiation before Pluvicto?
Pluvicto with low PSA?
Heading down hospice road too…
Goodbye but never forgotten
