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Posted 2/17/2022 5:27 PM (GMT 0)
Well my wife and I went to the oncologist yesterday and I should have known something was up because they let her in the the doctor office with me. Because of Covid she was never allowed in. I am currently on Lynparza started 1/26/22 I have felt awful and all I do is lay on the couch I have no energy. The doctor told me to stop the pills because they are not working. He said it is not the pills that are causing the weakness and no appetite I have lost another 5 pds he said it is the cancer and we have reached the end of the road. He said there is one more Hail Mary option weekly infusions with Carboplatin/taxotere he said it only works in 15% of the cases but it is all he can offer. Since Hormones don’t work so he said I can throw a lot of pills at you but they will not work. He said if the infusions fail to lower PSA he is going to arrange for Palliative Care then Hospice he said avg survival in my case would be 3 to 6 months. Needless to say we were both shocked and need to try and be strong and live one day at a time the best I can.
Posted 2/17/2022 5:34 PM (GMT 0)
That wasn't the news that you wanted, Jerry. Yet, you appear to be handling it well, and good for you. You have some difficult choices to make and I will keep you in my thoughts as you go through this part of treatment. Peace be yours.
Michael
Posted 2/17/2022 6:40 PM (GMT 0)
So sorry Jerry. The chemo might be worth a shot, one in eight chance of it helping, but for how long? Guessing you're in your mid eighties now, better than typical life expectancy for males. Reading your history it's surprising that there was an adjacent tumor given stage 2 with neg margins. I wonder if you'd had ultra sensitive PSA's your SRT could have started sooner, or if it would have even made any difference. G8 can kill. Good luck getting your worldly affairs in order.
Posted 2/17/2022 7:17 PM (GMT 0)
My dad was on carboplatin for 5 sessions he tolerated it well we were also at the end of the road until we were offered LU177 now we are very very hopeful.
Please look at carboplatine until you can find lu177 either given as compassionate use or any other way in Europe
In US dr. Nordquist in Omaha might help you for the compassionate use .
Posted 2/17/2022 7:22 PM (GMT 0)
Thank you for your support I am 82 years old and have lived a great life. I fought for 12 years and now it time to rest. I am lucky that I have a l
wonderful wife who takes great care of me. Our family live in different states so we have no additional support. My wife takes care of everything and I am still pretty mobile.
Posted 2/17/2022 7:37 PM (GMT 0)
You show so my gratitude towards your wife, it’s admiring.
But there are options as I said you can make things work. My dad was diagnosed 17 years ago and with MCRPC from 2011, we have putting off fire since then. He is 72 and he has never lost the spirit in him even though at times we believe we were at the end of the road.
You can read my post Lu177 Update there is a short summary of all we have been going through.

What ever you decide I wish and hope for the best for you and your wife
Dime - Bianca
Posted 2/17/2022 9:13 PM (GMT 0)
Jerry, so sorry about this news, It always hurts to read such news.
your attitude and appreciation for the life youve been given is amazing. good luck with however you decide to move forward.
Posted 2/17/2022 9:38 PM (GMT 0)
Jerry, so sorry about the news. Hopefully the 15% solution will work. You have beaten the odds for 12 years so hopefully you do so again.

I wish you and your wife the best. You are in my thoughts and prayers.

Jim
Posted 2/17/2022 9:59 PM (GMT 0)

Dear Jerry2 ~~~

Our paths have crossed here so often, over time.

You have been --- and still remain --- a steadfast SOLDIER IN THE TRENCH --- and stood alongside all of us here, throughout your arduous treatments.

In fair return, we all stand beside you and your wife and family now.

You have shared some tough news with all of us today, but your grace and strength and resilience all continue to shine through.

Please know that you have the support of all of us here --- and I am sending you and your wife and your family my thoughts of care and support, going forward.

In fellowship ~
CYCLONE - # Iowa State University

Post Edited (Cyclone-ISU) : 2/17/2022 3:04:03 PM (GMT-7)

Posted 2/17/2022 11:59 PM (GMT 0)
Dear Jerry,

Of course it's not the news you wanted to hear, and I'm sorry for that. I know I speak for others too when I say that we appreciate your candor and your attitude. I wish you and your wife well on this next part of your journey.

M
Posted 2/19/2022 2:03 AM (GMT 0)
Well latest PSA number are up 154 points in a week. The total now is 484 the doctor wants me to start infusions this week of Carboplatin/taxotere weekly for 3 weeks on 1 week off. He said this is the last thing he can offer that would have a 15% chance of working. I am trying to decide if it is worth it to have infusions and they don’t work and the little time I have left I am sick. At mt stage nothing is going to cure me or put me in remission. I have no idea how long you can live without treatment of any kind. 3 months 6 months hard to wrap my head around it. My wife of course wants me to try it but of course says she will support my decision, Hard choice any comments>
Posted 2/19/2022 2:37 AM (GMT 0)

We all surround you & support you in our collective thoughts, Jerry.

Each scenario is different.

I remember once --- some years ago --- telling my oncologist that I needed a break in treatments, when he suggested another round of chemotherapy infusions.

It's a situation called "TREATMENT FATIGUE" --- it's real --- and you can hit an emotional "brick wall" --- and it took me a couple of weeks to work past it.

It was during a time when I was going through more rounds of tests, scans, teaching full time, and pursuing a full series of chemotherapy.

A couple of my friends experienced deep levels of treatment fatigue - and actually stopped going to their medical appointments for a time.

My humble thoughts for your situation:

Could you try the weekly infusions for the initial 3 weeks that was proposed --- see how it goes --- and see if it has an impact on your lab numbers?

One friend of mine pursued a similar regimen - the weekly infusions --- with scheduled breaks along the way ----and had some unexpected treatment success, when he felt he was up against the brick wall.

These weekly infusions are typically a lighter dose - compared to the "once every three weeks" dose that is often used with TAXOTERE.

Above all else --- we are here to SUPPORT YOU in whatever decision you make.

The complexities within the decision are real --- and I hope the ANSWER that's right for you, at this juncture, is clearly illuminated.

Sending my support ~~~
CYCLONE - # Iowa State University
Posted 2/19/2022 7:29 AM (GMT 0)
Jerry, being new here and just starting my journey, I have no reason at all to give you any suggestions on how to proceed. I just wanted you to know that it is the veterans of this disease like you that give me strength to not give up. I can’t imagine the hardship you and your wife have been through over your journey. However, the fact that you have had many years to be with your wife after your initial diagnosis, gives me hope for the same on my journey. You are the true definition of a fighter and much tougher than I will ever be. You know how you feel and your choice now is one we all have to make at some point. If you decide to do the treatments, my prayer that they help. If you decide to stop treatments, I hope you will live the rest of your life with you wife to the fullest. So, thanks for the inspiration you have given me to give it my all as you have done to fight this disease. My best wishes to you and your wife.
Jack
Posted 2/19/2022 3:14 PM (GMT 0)
It ain't over till it's over and it ain't evah over...it's just beginning...know this to be true...begin now...simple advice...but as true as life itself...well done Jerry...logo
Posted 2/20/2022 4:13 AM (GMT 0)
Jerry
So sorry for the news. Not what anyone wants to hear or deal with. However, we all will deal with death at some point. I would agree with others and encourage you to try at least one or two rounds. One benefit of this time is to get all of your relationships current. I will be praying for you as you give support to your wife and the decisions you will make together. This can be an important time. I had surgery about a year before you. SRT eight years later. I have had two heart bypass surgeries. If you want to let me know-
Posted 2/20/2022 5:19 AM (GMT 0)
Jerry:

This is so very tough to read. I've been following your saga since the early days of dealing with this crap. I haven't posted because I had nothing to contribute. I kind of hope you give the new chemo regimen a try. One positive: you can always get some quick feedback/test results and stop.

Jerry, good luck. YOU will have to make the decision on how to proceed.

Mel
Posted 2/20/2022 12:16 PM (GMT 0)
Good luck
Posted 2/20/2022 3:18 PM (GMT 0)

Jerry2 said...
Well latest PSA number are up 154 points in a week. The total now is 484 the doctor wants me to start infusions this week of Carboplatin/taxotere weekly for 3 weeks on 1 week off...Hard choice any comments>


I'm the new guy here, but lurker for a long time. You've been such an inspiration. Thank you for sharing your journey.

I can't see all of your older posts, but I assume your cancer is castration-resistant? Did your doctor discuss putting you on testosterone to fight it? Based on the research that your cancer right now has evolved to thrive in a low testosterone environment, which means it has a new achilles heel.

https://www.pcf.org/c/could-more-testosterone-be-the-hidden-key-to-fighting-prostate-cancer-part1/

Sorry if you've already considered and discarded this. But getting big doses of muscle and energy building testosterone in the end game might not be the worst thing.

Wishing you the best, Jerry.
Posted 2/20/2022 3:49 PM (GMT 0)
Just a note of encouragement here. My husband too was told it was the "end of the road" in Oct of 2021. Hospice was suggested. Husband wanted to try one more treatment of Carboplaton/Cabazitaxel. he has since had 5 of these treatments and his PSA has come down. Scans have shown a reduction in size of tumors. His PSA has now plateaued. We are hopeful the plateau will last for some time. Hoping my husband's story will give you hope.
Posted 2/20/2022 3:52 PM (GMT 0)
Thank you for the suggestion I will talk to my doctor next week.
Posted 2/20/2022 4:59 PM (GMT 0)
Dear Jerry,

While we have not met in person, I feel I know what you are made of, sir. You have been hit with some darned low blows. Still, however, you have fight left in you - - and that wins my instant respect.

Those who post her are warriors. We fight an enemy that does not play by any rules. This vile, cursed disease invades our bodies and tries to rob us of our spirit. Sometimes, it comes close to doing that. darned close.

But it must not win. The Jerrys and all the others who take to this website have heart, soul and tenacity. We are forced-gladiators. We do what humankind has always done through the ages. We stare PCa in its evil eye and punch, kick and gouge back with everything we can muster. No holds barred.

Jerry, the crew here are shipmates-via-necessity. The guys with PCa. The good women and relatives who love us. Hell, no one wants to be here. Yet, we are.

All of us stand in your corner. All of us believe in Jerry as Jerry believes in us.

Such is the American spirit of unity.

Godspeed, sir.

NJ Fred
Barnegat, New Jersey
Posted 2/25/2022 5:32 PM (GMT 0)
Well after all your encouragement I have decided to go one more round, I started 30 mg of Taxotere yesterday plan on once a week for 3 weeks with Predisone. Last time on was on 75mg once every 3 weeks. Felt bad yesterday very weak and a lot of back pain. Slept in my new anti-gravity chair all night and felt much better today. Just tired, my wife is feeding me fruit shakes and Ensure to keep me strong. Doctor said he wants to start at a low dose to see how I take it, if good will think about adding Carboplatin. Since the last time I was on the high dose of Taxotere I almost ended up in the hospital but it did lower my PSA (the only thing that worked). I will keep you posted on my last try. Thanks again for all your support.
Posted 2/25/2022 6:15 PM (GMT 0)

You're giving it all you've got. You can ask no more of yourself than that.

I can tell your doctor is looking after you.

Your family is rallied around you, and all of us here are united in our collective support for you, Jerry.

Keeping you close in my thoughts,
CYCLONE - # Iowa State University
Posted 2/25/2022 7:03 PM (GMT 0)
Jerry,
I fully support your decision and wish you the best possible outcome. While it won't be a walk in the park, it is good to see how supportive your wife is as you enter this phase of treatment. You have helped all of us in sharing the path you have taken.
Blessings
Michael
Posted 2/25/2022 7:38 PM (GMT 0)
Jerry, as I posted before, you are the definition of a true fighter. Once again you have raised my spirit with your continued courage to not give up. I hope this time you tolerate the treatment much better. My best wishes to you and your wife who is surely just as much as a fighter as you are. Try to stay positive and hopefully this will add many better days and months for you and your wife.
Jack
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