Fight or Flight...

[DesmondEtienne]

Not sure were to start but its a scary time for me. I have been diagnosed with stage 4 prostate cancer which has spread to my bones leaving me unable to walk, and confined to my bed. Its been like this for the last two months and I don't know what the future holds for me... Getting the standard treatment for now but the big push has yet to start. I live in the Caribbean, Saint Lucia to be exact and the health care system is lackluster at best and expensive. That's my story in a nutshell, and I am hopeful to get any suggestions, support, and inspiration from here. As much as I know the priority is the cancer, I would love the opportunity to walk again and fight this disease standing up right...

[NickJoy]

Hello Desmond, I am so sorry that this has hit you so young. Would you be able to let us know what treatments you have had so far? There are several very knowledgeable people on here who will hopefully be able to provide you with some help and they would need this as a starting point.

[DesmondEtienne in reply to NickJoy]

Zoladex hormone therapy, that's the main one, but I also start chemotherapy tomorrow 17th April my 1st round..

[NickJoy in reply to DesmondEtienne]

Desmond please look at Tall Allen's comments below. Triple therapy is now standard of care - maybe you could bring this up tomorrow. It looks like you should be adding abiraterone to your current treatment now - not later. This triple therapy has only relatively recently been established as the norm. You might have to nudge them. Best wishes to you.

[RyderLake2]

Hello,

You live in a beautiful part of the world but you need to be under the care of a knowledgeable and experienced medical oncologist. Who, where, and how you get there are all problems you need to work out. Good luck!

[DesmondEtienne in reply to RyderLake2]

I couldn't agree more, thank you..

[CountryJoe in reply to DesmondEtienne]

Hello Desmond. What exactly is keeping you confined to the bed?

[EvFC]

Hi Desmond, I don’t have any advice to offer as we are new to this journey, but I just wanted to say I see you and I am wishing you all the best. 🙏🏻💛

[DesmondEtienne in reply to EvFC]

Good luck to you and your journey as well, best of luck to us both..

[Tall_Allen]

The standard of care for your diagnosis is called "triplet therapy." It consists of Lupron (or similar)+ docetaxel+abiraterone. It may provide relief from your crippling bone metastases. I suggest you talk to a medical oncologist at MD Anderson in Houston, Texas.

[DesmondEtienne in reply to Tall_Allen]

Thank you..

[Azores1 in reply to Tall_Allen]

TA-do you believe the Nubeqa (Arasens trial) is as effective as abi?

[Tall_Allen in reply to Azores1]

I have no beliefs one way or another.

[Azores1 in reply to Tall_Allen]

Let me rephrase—have you formed an opinion based on data you have reviewed? Thank you.

[Tall_Allen in reply to Azores1]

Let me rephrase. There is no data on which to base an opinion.

[Azores1 in reply to Tall_Allen]

Thank you for that as well as your sharing of information!

[Kaliber]

hi Desmond … I too have had cancer damage spread to my knees and feet ( spine, rotator cups , my whole body actually ) but I’ve worked hard at what I call “ workarounds “ to make it possible for me to get out and have a bit more QOL time with my wife while I can. I can shuffle my feet about 15-20 feet max and standing up ( hunched over ) in one place doesn't last long. I’ve started using office chairs ( with good wheels ) to get around the house , I have wheeled chairs to get outside and I have an electric etrike that I can drive in bike lanes and shop in local shopping centers in. I’m not sure how bed ridden you are but hand control electro-pneumatic “ lifts “ exist to get you up easily and put you into a mobile chair or electric wheelchair, in and out of a bathtub-pool or jacuzzi and much more.

The point being that you can probably get out of that bed if you want and start taking advantage of the time you have left while you do have time left. You definitely qualify for palliative care. The palliative care team will make sure you are comfortable ( pain meds, etc ) and knock themselves out helping you make your life better. Just my own take ( not knowing deep details there ) but I suspect you have lots of opportunities ahead of you …yet to come, and if you tap the resources around you , you can get out of that bed and “ get going “ . By now you realize how important your remaining time is, I encourage you to get in there and make the most out of it ( so to speak ) if you are “ at all “ able. You will be happier and your family will love it too.

Best wishes brother

❤️❤️❤️

[DesmondEtienne]

I have also explored the possible of having back surgery to address the issue of a fracture in one of my vertebra t8 if I'm correct. My neurosurgeon believes that's the main reason for my nerve damage to my legs, but he doesn't want to proceed until I get an MRI of the thoracic spine to assess whether the area has any sign of cancerous tumors. I've agreed so waiting on the date to get it done. My Oncologist on the other hand thinks that surgery at this time is out of the question and reckless before I do the chemotherapy, which I've agreed to do. He believes that with chemo there will be the opportunity to gain my mobility back with the treatment and physical therapy. My question is, when will it be a good time during chemotherapy to consider surgery or is it a matter of completing one thing chemo, and then move to the other, surgery?

[Blue-Mockingbird in reply to DesmondEtienne]

My husband had a compression fracture of his T7 that eventually caused him to be bedridden as well. Any surgery for him was out of the question due to deterioration of his other vertebrae.

Keeping fingers crossed and sending good vibes to you

[Professorgary]

I had a Psa of 5664 May of 22 and had been in great pain and on crutches the previous 8 months, so much that I begged God to take me home. Started Lupron in June after being on Casodex for 15 days. Took ten months for Psa to reach 6 but then started rising Apr of 23. Sept of 23 went on Abiraterone and Psa is dropping. Last check it was 1.02. I now hunt and fish and have good QOL. And I pray often and thank God for my improvement.

My Psa over the last few years

[SteveTheJ]

You have no choice but to deal with your condition. If you approach it with fear you'll make bad decisions. Fear won't help so get all the info you can from your doctors and here and make the best, educated decisions to give yourself the longest life and the best quality of life.

You'll find men who have lived with stage 4 prostate cancer for 10+ years. It's possible and I certainly hope you're one of those.

[Amerfilms]

Best wishes to you in these hard times

[j-o-h-n]

With a name like Desmond, you gotta be a winner....

Good Luck, Good Health and Good Humor.

j-o-h-n

[Sagewiz]

HI Desmond. So sorry to hear of our predicament. I would listen to the oncologist. You immune system is your ultimate ally in the fight against cancer, and having back surgery would take too much healing energy away from the primary focus: beating the cancer. Once yo have had those treatments and are fully healed and recovered is the only time you should consider adding a back surgery to the mix. Awful as it is, that is your best chance for survival. Getting good faciities is important depending on your resources. MD Anderson is one of the top Cancer hospitals in the US as someone mentioned, but there are others as well.

Eating a healthy diet and staying fit are the two best things you can do, but you have to do what you can as you can. Stay positive and keep researching. I use The Moss Report which is a paid subscription service that analyzes various treatments and makes recommendations. Another site that is free is PCRI.org (Prostate Cancer Research Institute). I always check in here as wel as so many people share great information and first-hand experiences.