i wanted to give an update since my last Chemo adventure, and discuss where I am now.
If you were following (and if not please look through my posts as you will to get the whole story), I last reported after my 6th Docetaxel session. My PSA was still rising. 3.02 when I started to 6.98 at the sixth session with no dip at all.
That was three weeks ago. Before my 7th session (they had recommended 10 sessions) I made a change by moving to Canada permanently. I was able to get on Canada's Health Plan, called MSP here. So I had my interview with what will now be my Canadian ONC yesterday. My blood test showed my PSA now at 10.4, So during the 18 weeks I was doing Docetaxel, my PSA tripled. We plan on scans in the next week to see what growth there is, but I already am starting (for the first time yesterday for certain) feeling the C7 tumor. I had to take Hydrocodone for the pain for the first time.
We discussed my USA plan (I can still use Medicare if I need) and what those doctors think now. We looked at all the history, tests, drugs, etc. We talked about the pros and cons of new treatments. Then I asked the difficult question we will all ask at some time.
What am I looking at with or without treatment?
The Canadian ONC was honest. You have maybe less than a year, he said. All the options at this time would only push that out a little.
Okay. So here we are. Every treatment I have tried has failed. Zolodex, Lupron, Casodex, Erleada, Xtandi, Zytiga w\predisone, now Docetaxel. We discussed the options again and how they could buy time or not.
1) Continue with Chemo but use Cabazitaxel instead: Cabazitaxel he said was more toxic and may be less tolerated than Docetaxel. I asked how long would it push my date out. He said 6 months to maybe a year. So my feeling is 18 weeks of pain for 18 weeks more of life may not be what I want. He also said there would not be a clear benefit here as EVERYTHING else failed miserably.
2) Trials: He said, because my blood pressure history was so high (now normally at 170/100, often higher) that I would probably not be accepted, and of course the benefit might not even be what Cabazitaxel would be.
3) Do a biopsy of the original tissue for possible "other" treatments available. Immunotherapy possibly. This is still up in the air as we need the original tissue to check this and that was two states and one country ago.
So. There it is. My prognosis. I would like to ask those inclined to comment for any thoughts on all of this. Anything you can recommend? Stories of how you personally handled this decision? I started writing this about 3am. I learned all of this at 10am yesterday. I am making a list for me and my wife to discuss. We decided to not talk about this for yesterday. Just sleep, think. I thought it would be best. We just needed to absorb it all, let it bounce around our heads. This Forum responses I hope to talk with her about later today. No decisions yet. Just talk and ideas. Would love if it some of you would like to share your experiences and ideas so I can share them with her.
Thanks. Stay Strong.
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dpowellnt
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It is a tough conversation to have. My care team(wife and three friends) have already had one of these tough conversations. The sad reality is this is a horrible condition and an even more horrible demise that I got to see with my father. My team has decide that we will evaluate my condition every six months and after meeting we decide on continuing treatment or stopping treatment with myself having veto power. I am having great luck with Lupron and Zytiga but the side effects are brutal. If not for my team I would have discontinued treatment six months ago. Good luck with your which ever choice you make, in the end it is your body and your choice
Genetic testing definitely seems worth it as with some mutations men seem to get a good response from immunotherapy drugs. It is better to test a recent tumor sample or circulating cancer cells for a mutation than older biopsy tissue since the cancer could have sent developed a new mutation. It may be possible for you to have one of your Mets biopsied or have a liquid biopsy done through a test like Foundation One, which uses a blood draw. You can also consider provenge, or lutetium if you can afford it. From my understanding cabazitaxel is less toxic than docetaxel.
Please read Dr. Shamsuddin’s text “IP6 and Inositol” available from Amazon. You will note he is a medical researcher at the University of Maryland Medical School. I have been using IP6 successfully since 2015. I am a Gleason 8 and have been using Lupron without developing resistance since my diagnosis in 2012.
My understanding is Cabazitaxel is easier to tolerate than Docetaxel. I think there are some posts on this. You could do a search on that.
I also think you'll get pain relief from it so your quality of life could improve despite the side effects. The side effects are mainly for the first 5 days of the cycle. I did lots of activities during the second and third weeks after infusion when I did Docetaxel.
There's also LU-177 but you'd probably have to travel for that and get a PSMA and FDG scan first to see what the chances of it working for you.
I think you should get a fresh biopsy of a metastasis, if possible. The cancer changes over time. Depending on histology and IHC, there are many clinical trials that you may qualify for based on it. I trust you've had a germline genomic test. Genomic testing of the tumor sometimes comes up with something actionable.
If you decide for cabazitaxel, consider adding carboplatin. I don't understand what you mean by "18 weeks of pain for 18 weeks more of life ." Chemo decreases the pain. You may also find that the prednisone given with it lowers your blood pressure.
18 weeks of pain: nausea, sickness, extreme fatigue. If I go through that again, to gain only 6 months of life, is that a good exchange. I'm not 50 and biking, going to work between treatments. I'm a drug wasted 66 who lost the ability to exercise when sick on the Chemo, which for me lasts most of the three weeks between sessions.
Do I want a year feeling "almost" normal before I die, or do I want to torture myself for another 18 weeks of Chemo to only get 6 months (or less) of extra life? And will I be even physically worse if I did the Chemo as this stuff is leaving me incapable of even thought?
"Pain response could be evaluated in 111 patients in the cabazitaxel group and in 109 patients in the androgen-signaling–targeted inhibitor group. Confirmed pain response was observed in 45.0% of the patients in the cabazitaxel group, as compared with 19.3% of those in the androgen-signaling–targeted inhibitor group.
Skeletal events occurred in 24 patients (18.6%) in the cabazitaxel group and in 35 patients (27.8%) in the androgen-signaling–targeted inhibitor group. The median time to a symptomatic skeletal event was not reached in the cabazitaxel group and was 16.7 months in the androgen-signaling–targeted inhibitor group (hazard ratio, 0.59; 95% CI, 0.35 to 1.01) (Figure 3 and Table S5). A total of 28.8% of the patients in the cabazitaxel group and 51.4% of those in the androgen-signaling–targeted inhibitor group were estimated to have had a symptomatic skeletal event at 18 months."
And then there is this study saying Docetaxel and Cabazitaxel were pretty much the same. (Although they DID find that cabazitaxel was less toxic. Strange as BOTH my ONCs said otherwise.)
FIRSTANA proved that Cabazitaxel is no better than Docetaxel in the first-line setting, however it often works in the second-line setting after Docetaxel fails. I talked about chemo with my doctor at my most recent visit. He said Cabazitaxel is not any more difficult than Docetaxel, but adding Carboplatin makes it a "tough regimen".
Having done chemo myself, I certainly can understand your feelings about possibly not wanting to do it. There's always the option of just trying one cycle and seeing how it goes.
"The median overall survival was 13.6 months in the cabazitaxel group, as compared with 11.0 months in the androgen-signaling–targeted inhibitor group "
If I understand this correctly, Cabazitaxel added 2.6 months to life. The payment was 18 weeks of Chemo, and if we add Carboplatin, one doctor that was asked that question said it would be a "tough regimen".
Am I understanding this correctly TA? Why would that be worth it?
Those are medians - half do better, half do worse - which are you?
You keep inferring that chemo will make you feel worse, while the opposite is true. The first chemo used for prostate cancer, mitoxantrone, added nothing to survival - it just kept relieved pain better.
Again, "Confirmed pain response was observed in 45.0% of the patients in the cabazitaxel group, as compared with 19.3% of those in the androgen-signaling–targeted inhibitor group." Crippling skeletal events are also cut in half by Jevtana. My mother did not want to survive after she was crippled by bone metastases.
I think they reduce the dose when they add carboplatin. My friend, who had both, tolerated the combination well and there was tumor regression after the 3rd infusion.
Only you can decide if you would prefer the side effects of Jevtana to the crippling and pain of the cancer. A rock and a hard place.
"Only you can decide if you would prefer the side effects of Jevtana to the crippling and pain of the cancer."
So that I can understand this better, now that you have said it twice.
Are you saying there would be less pain during the final stages if I used Cabazitaxel before that stage? I would think the final stage would be no different pain wise regardless what I used before?
I just want to be clear about what you are saying. I'm saying that I don't want to waste my feeling better time to chemo with the idea I'm gaining very little. I would think I could use this better feeling time to travel and enjoy my final months. You seem to be saying take medicine and feeling bad until I die would be the best course if I gain a few months.
I truly love your expertise TA. I am not arguing. I just need to be absolutely clear on my options before I can make a decision. On your median question: I have not reached the published median on ANY medication I've taken.
No- I am not saying that at all. I'm saying that you may not have the choice you think you have. The idea that you will have "feeling better time to travel and enjoy your final months" is probably pure fantasy - I hope I'm wrong - but that's never how I've seen it go.
Take my mother, for example. She refused her second round of chemo infusions (for uterine cancer). The pain in her back continually got worse, and finally the bones in her sacrum gave way. After that, she was an invalid. She could only get into a wheelchair with a hoyer lift, and for the most part, she was confined to her bed. Morphine kept the pain in control, but she was pretty out-of-it. When she refused chemo, she thought that she would die soon anyway. Unfortunately, she survived for over a year after that with no quality of life. There was no assisted suicide in her state. Would her last year have been better with the chemo? Who knows?
My sad experience with prostate cancer patients is similar. The downward spiral accelerates. Sometimes chemo doesn't get an apparent response, it just keeps metastases from getting dangerously big. I just 2 weeks ago lost another friend to prostate cancer. In his case, a spinal met (discovered about 6 months ago) grew to the point where he could no longer walk. They operated on it, but in spite of PT, he was never able to walk again. In his case, he had Xofigo, but no chemo. Again, I don't know whether the course of his disease would have been better.
I feel good now (that is relative of course) and plan to travel and sit on a warm beach until I go. Armed with fast acting Morphine and smoking pot (for medicinal purposes only of course ). I'll float on the waves and kiss my wife, write down my experience for posterity.
Right now, that sounds like a better plan than chemo-ing myself into oblivion. I mean, really, when do you stop? And NO, I don't consider this to be "quitting or giving up" as you say TA. I'm surprised you said that.
I can still be convinced otherwise, but I don't understand yet the difference. I've had Cancer for 22 years. I feel like someone is now calling me. I need to listen.
Chemo decreases pain? I guess for some. Not me. My pain at C7 has grown.
Because of my Carcinoid Syndrome cancer, and poor blood pressure control, the doctors say I would not be a good candidate for clinical trials. Too many factors.
Are we in the Valvano mode? Never give up fighting. Never ever give up? Or is fighting an ultimately guaranteed losing battle seem unproductive and leave us with no life left to live at all?
I just checked a few clinical trials - none of those I checked had an exclusion for high BP. If you can, a biopsy of tumor tissue and histology, IHC and genomics might point you toward trials specifically tailored for your version of PC.
1) Is there anyone on this forum who has failed at Docetaxel, after trying everything else normally recommended?
2) What treatment did they try after Dolcetaxel? How long did it help them. What benefit can they say they recieved.
I understand y'all are trying to help. However just to say there is something that MIGHT help, without saying if they tried it in near my circumstances, and what was the outcome, is missing my point.
The "Point" is, how much will it help, and at what cost physically and emotionally?
So 5th year Docetaxel users, speak up if you wish. I would like to know how you decided to do what you did, and was the outcome worth it?
Statistics are a better indicator for you than people on the forum. Every person that was in the trial was a real live person, just like you. The cabazitaxel trial included 255 men who had previously tried and failed docetaxel and either abiraterone or enzalutamide. If you read the study, you will learn that pain and skeletal events were much reduced. Isn't 255 people more convincing than the couple that might respond to you in this forum?
Alan is right about the genomic testing of the tumor maybe revealing another option that most likely would be more likely to help you. When my onco had my test done it qualified me for Keytruda. I was already on APCEDEN vaccines for a year off and on, and the combo really helped me. APCEDEN is out of pocket plus it’s in India but perhaps you could try Provenge like Magnus mentioned. The side effects are much less than ADT and chemo, at least for me.
Well , for your oncologist to say you have less than a year .... less than a year to what ? Saying how long someone has left is a very iffy guess at best. 21 months ago, my medical team brought in a hospice team and wanted me to go to hospice due to my condition at the time. Here I am, 21 months later ... a little worse for wear maybe , but still hanging in there pretty well.
On this group is my friend Urang. Urang was diagnosed more than 22 years ago. He has endured every nasty PCa treatment of the last two decades , and some were terrible. Two or three years ago , he ran out of options of any kind ... he’s had every possible treatment... probably more than once. Now and then he has radiation to kill off a unbearable metastasis on his spine and has a bunch of implanted stainless steel supports where his spine was eaten away . His psa has gone from 250ish to 500ish .... but he still chugs along putting out PCa fires and is more mobile and vital than I am. He has metastasis literally eating his bones all over his body but he still appears to possibly have years left as well.
The point being is that no one can actually say when your time will be up ... they can make educated guesses but everyone is different. If I were you, I wouldn’t give that “ less than a year “ prognosis all that much weight. A lot of this Is attitude ... just say “ hell no, I won’t go “ and believe it earnestly.
Just my two cents worth from a guy that had ...” days “ ...” to a few weeks at best “ nearly two years and I’m still going strong.
Just say’in brother it’s WAY too early to start wringing your hands now ... 💪💪💪💪👍👍👍
I'm just 24 hours from the ONC appt. I will say that the doctor that put me on Docetaxel also said that if I delayed treatment I would only have a year, 18 months at the outside. As I said though, with Carcinoid Syndrome I was told 4-6 years. That was 32 years ago.
It is not whether they are right or not. And if they came up tomorrow with some new treatment that could keep me alive, I would assuredly do it. I did a very hard treatment that pretty much punched out my Carcinoid in 2001. However, 92 out of a hundred actually died with the same treatment. Was it worth it to them?
So my pondering is again NOT that I have had this prognosis. It is only if any of the things mentioned are going to help push this out significantly. Or am I spending four months being sick on treatments and incapable of living normally, for 6 months of extra life?
It’s all a personal choice of course. I’m never expecting to have the “ living normally “ experience again. The remainder of my life will be spent in ADT ,zometa or chemo hell. I’ll never have any genitals again, my new giant boobs are permanent , and the 2nd form of cancer I just had surgery on, on my forehead last week ( large very red angry 5” row of staples that look like a zipper, brown nasty goo running down my face a few times a day ) is just icing on the cake ... something about my treatments promoting those to grow , got a new one on my nose just since the surgery . After 2 years like this .. this adt sickness seems normal to me now. I had to buy a e-trike for mobility ... I can just barely walk to my truck in the driveway and getting up into the seat a serious challenge. Adt has thrown my bg, bp and cardiac rhythm into major disarray and I’m far more likely to croak from stroke and / heart attack than the cancer right at this point. All this probably sounds like miserable chit and for sure it is .... but you know what ... my personal choice is still to live. My will to live, at any expense , dominates my reality.
I’ve seen a lot of guys here just give up and quit, and I know exactly why they’d want to ... that’s their personal choice and it’s clearly understandable. My personal choice is different. I’d do and put up with about anything just for a couple more weeks when the chips are down. It’s “ hell no, I won’t go “ for me yayahahahaya that thing sitting on my couch, with the big black hoodie robe and bones sticking out .... drumming it’s finger bones .... it’s gonna have to drag me out kicking and screaming and I hope it brought it’s lunch yayahahahaya yayahahahaya.
I’m sure all us late stage 4 guys are in palliative care and I guess if you decline the sickening treatments, you’ll be entering hospice care ( untreated, this can get real nasty near the end, hospice is usually the only humane choice when you quit or give up). You’ll get the pain management , counseling , religious efforts and right near the end ,most likely get the “ cocktail “ that eases you out humanely ( oxy - cocaine ) .
I went for a nice cool early Morning walk with my wife this morning ( me on the e-trike of course) ... we held hands and enjoyed the open fresh green AG fields here ... 1000s of geese in huge v shaped flocks flying overhead honking. Came home and brewed a pot of fresh ground Kona coffee then took our cups out and sat in the Jacuzzi for a couple hours. Me savoring life and trying to enjoy it to the max every day I have left. I’ve settled my affairs and have gathered my love ones and I spend every day focused on QOL. For me , the chance to experience another new day with my wife is worth about any personal sacrifice. Its all about personal choice, this is mine.
Well come right over .... we are one of the 6 National Covid hotspots right now .... people laying all over the place, buss stops, street corners , homeless camps , coughing and wheezing.... oh dang I forgot all the restaurants have been closed here for a couple months.
Yayahahahaya.
Ah well maybe one of these days. Maybe take a lunch basket up to one of the nearby giant redwood groves. My wife and I are going to go up tomorrow.....
Creamy pont leveque
A bold “ very “ pungent petit livarot
Smooth Camembert le bocage
Triple creamy delice de Bourgogne
Some sweet crottin de champ goat cheese
Green gooseberry preserves topping
Air cured sopressata
Del duca prosciutto
Carpaccio sliced black truffles in oil topping
Vulpine prosciutto
Squares of trimmed medium light nut bread and water crackers to slather upon ...
And two or three properly cooled Bottles of Puligny - Montrachet To wash it down with.
Whadda you think , dunno if you like this kind of lunch ?
my mouth watering just thinking about it.
😂😂😂😂👍👍👍👍
Btw: all this is available on Amazon and wine.com. Search amazon for Marky’s French sampler for the easy way to get quality cheese goods with the least trouble. We might be holed up unable to leave our house but that doesn’t mean we still can’t enjoy ourselves now and then. Screw this virus ....
Yayahahahaya haven’t even been out of the house in nearly 4 months except to go to Kaiser. Headed to isolated places in nearby National forest where there are no people / Covid bugs. Might not get to do this again,ever, so not skimping on the groceries yayahahahaya.
Thanks buddy ... gonna chow down like a sidewalk restaurant in France with giant redwoods backdrop. Trying to make it count...... QOL . A special time for me and my wife , some quality time together. Hope your weekend is a good one too.
Yayahahahaya thanks Craigslife. Wifey grabbed the wine and is now back in her bedroom .... out !!! Oh well ... maybe tomorrow , or ... next month when the temps cool off a bit from 100+ yayahahahaya. Might make myself a plate .... it’s the thought that counts I guess.
dpowellnt, saddened :0( to read about where you are right now.
---You wrote >>> "... 18 weeks of pain: nausea, sickness, extreme fatigue. If I go through that again, to gain only 6 months of life, is that a good exchange. I'm not 50 and biking, going to work between treatments. I'm a drug wasted 66 who lost the ability to exercise when sick on the Chemo, which for me lasts most of the three weeks between sessions.
---Do I want a year feeling "almost" normal before I die, or do I want to torture myself for another 18 weeks of Chemo to only get 6 months (or less) of extra life? And will I be even physically worse if I did the Chemo as this stuff is leaving me incapable of even thought?.."
NO ADVICE from me, you have gotten plenty from those before me, but simply my take on MY LIFE.
Married 47 years ago. Told wife 40+ years ago --- "I WOULD NOT WANT TO LIVE" and would end it all if "LIFE SUCKED." She said "You will not feel that way when the time comes." 5+ years ago Gleason 10 diagnosis and NOW SHE UNDERSTANDS.
I'm not FIGHTING THIS INTRUDER just living the best I can with having had CASTRATION FIRST then cryoablation, one injection of an immunotherapy cocktail of drugs AND BIWEEKLY TESTOSTERONE INJECTIONS. No mets right now that I can feel or have shown up on scans but plenty enough of "age related aches and pains." Bicycled 72.27 miles yesterday (I like palindromes) and bicycled 141 miles (think I mentioned I like palindromes) for my 70th birthday on July 10th. Hurting right now but still kick'n it.
I don't feel your pains, I don't know your deepest inner thoughts but agree with THERE COMES A TIME when ?????
My doctor has been dedicating his life to treating men with PCa for 30 years. In 2018 he was diagnosed with having mets. In the operating room he treated himself employing his own developed methods by directing a doctor friend after having had a spinal. Maybe you might want to call him and consult???
GOOD LUCK and if you might want to see a bit about my doc's operation just youtube AKA Doctor Hope
I recommend Jevtana as your next treatment as well. You might be surprised at how easily tolerated it is and may slow down the cancer immensely, although it could take a few sessions to turn it around.
The Canadian health care system doesn’t offer a lot of options but if you can draw support from both countries, you’d be far better off.
My MO laid out my treatment plan when I was first diagnosed and it was Lupron, Zytiga, Docetaxel, Jevtana, Xtandi, game over. I still have Xtandi left and after that, I guess it’s time to talk alternatives.
Too many men die at 67 so try to do better than that.
Since you are simply making a list for discussion, it should not hurt to add things that you might dismiss immediately. That could include the long-shots that fall outside the sequential SOC failures that you have so far experienced.
One of those would be supraphysiological T, or BAT. It is true that this could have the exact opposite of the effect you desire, amplifying pain and/or accelerating disease progression. On the other hand, anecdotal examples from the medical literature dating back to the 1940s show potential benefit for some. Unfortunately, there is no consensus on how to screen for who those "some" might be.
As you continue to let ideas and emotions move around in your heads and hearts, you two might also find some usefulness in watching these documentary videos.
Being Mortal: Medicine and What Matters in the End
(The Passing On link also has a few other general links to related resources and conversation starters.)
Finally, here's one other link, in case you may not have explored it earlier. It may help transfer your thoughts and values into specific things that can be found or done in your local area of Canada when you may feel the time is right.
Hi luv im in England lost my hubby in January last year to this shite disease we had the same nothing worked 3 lots of chemo then he got sepsis we we told in the October that there was nothing more they could do i dont think we would have put him through anymore more he was just starting with the pain in his lower back and legs sadly as i said i lost my boo on the 10th of January 2020 and i miss and think of him every day but one thing for sure even if i could bring him back i would not not how he was you both have a very big decision to make quality over quantity or the other way round good luck guys xxx
😢😢. Tough spot to get to , Genomic testing would be a long shot but at this point what the heck. Get better pain drugs as my doctor said your not going to get addicted. Keep up the fight warrior 🙏🙏🙏
I have no experience to offer. I have not walked in your moccasins.
I have _theoretically_ faced this question in declining a recommendation for "salvage RT+ADT" after my RARP. Basically asked your same question: based on what we know from the studies, how much more survival-time would I get? The answer was convincing-- no thank you. A few weeks of added life/maybe just existence in exchange for the side effects of ADT were not worth it. For me.
You have volumes of input. It may help. Every one of us is unique. Every one of us may need to change course and change his/her mind. If I find myself with recurrence I will have to re-think all of this. It appears to me that most in this forum lean hard in the direction of *do everything*. Life is sweet and we all want to hold onto it. We all hope to die painlessly in our sleep. If it turns and goes bad, life has become too long. I do not want that either.
FWIW - you could try fenbendazole or mebendazole as an adjunct to whatever SOC you choose as long as your liver cooperates, taken with cimetidine to help absorption - it seems to have worked for some people though studies are scant - generally well-tolerated mycancerstory.rocks/single-...
artemisinin and/or DIM might also help, available on Amazon - others have written about these here
To me, it's all about Quality of Life. I make medical choices based on outcome and Quality of Life. Gaining a few more months at all cost isn't even a discussion. The Almighty has his hands on my Book of Life. Stay Strong and Stay in the Moment because they are all special!
My husband went on hospice on Monday. After 16 years of fighting, he says he has had enough. He wants no more treatments and hospital visits. Since he is BRCA2, he was on Lynparza for the last 3 years until it too started to fail. His ONC thought he might benefit from Rubraca, another approved Parp inhibitor. After taking it, he lost 10 lbs in 3 weeks and was nauseous and vomited. For months now, he spends most of his time in bed getting up going to the br with a walker. That is because he has bone metastasis from his skull down to his hips with many compressed vertebrae. No soft tissue metastasis that we know of. When he first told me he was done , I was disappointed. I had hoped that the Rubraca would make the bone metastasis disappear. Since he made this decision, he is feeling pretty good, in little pain, although he still spends a large portion of his days laying down. The doctors have never given us an end date, and we have never asked. I see on this sight that when people talk about quitting treatments, people mention the horrible death that awaits them. What is the alternative? Will continuing treatments somehow make the end easier? This is not an uplifting comment, and I am sorry for that. Our lives since his diagnosis have been filled with wonderful experiences and joy. This is just where we are now, and the question was asked.
Thank you for these thoughts. I've had cancer for 32 years with Carcinoid Syndrome first and now PC. I'm tired and I'm only 66. Been close to death with the Carcinoid but powered through. Actually that was worse than the PC so far. It isn't "giving up". I'm going to die. I would like to choose my life end, not just go from palliative treatment to palliative treatment because "well you haven't tried this yet".
If there was something promising more than a couple of months, I would do it. But these medications that promise "significant" longevity of 2.7 months more for 18 weeks of chemo seem pointless.
Only someone who has gone through what you have can understand. It is easy to quote studies and say a different chemo is well tolerated when one is well and has no personal experience with treatments they suggest. Live with decades of disease and a miserable QOL as you have and only you have the hard earned wisdom to know when to say when.
Hi craigslife ... Ooooooops ... I rattled on about hospice , entirely missing your very first line of your post yayahahahaya Well ..... that’s awkward . I’m just gonna blame it on Lupron fog and adt brain cell damage and crawfish out yayahahahaya. Anyway, I apologize for missing that and I want to wish your husband .... and YOU the best. I hope he can manage to stay comfortable and that you can find the personal courage of heart in this sad situation. Sometimes I think us croakers become so self absorbed that sometimes we forget there’s two of us lost in all this. he has you there to hold him , care for him and love him ... yea it’s da chits , the worse of the worse ...but he’s got you. It’s a bright uplifting thing , possibly all the best that’s left for him now. In that respect, at least, he’s a lucky guy.
If I could only think of one intelligent thing to say, I would say it. You have been with us for a year and we got to know you through your posts. You are one of our brothers and we all care about our brothers. It makes us sad and perplexed on how we can help you. Please know we are rooting for you whichever way you choose to go. Remember God (and we) are on your side.
Wakes are excellent! That's what I'm planning also. But let's just nudge this down the road a little? Jevanta maybe? You will know in a couple of cycles if you want to continue. So, you are depressed today, and you have a right to be. A couple of weeks, and maybe you will be totally different. Maybe. Give it a shot? All my best to you. Monte
Yes, I have already said that earlier. It comes down to if we can get it paid for in Canada. My doctor is looking into it. MSP does not pay for a lot of drugs. You need a supplemental policy for that, and I'm not sure I can get one here yet.
And I was thinking that we could do 2-3 and see what happens.
I'm starting to think that the solution to all of my problems is to move to China. But I'm sure they will say "We no want you, we no want you. Go away." The world upside down? Good thing we still have take out.
If I understand you correctly, the difficult question is, when is enough enough. When the available treatments no longer work, when do you resign yourself to the inevitable. We are are all gonna go sometime, but when do you let nature take its course. Its a tough one and at the end of the day, it's one that is yours to make. Your post reminded me of the movie 'Still Alice' and the difficult decision she had to make. For me, I'm only eight months into my APCa journey, and it's been a hard road for me, and for my wife and family. I am sorry and it saddens me to have to put them through all this, but we keep looking for light at the end of the tunnel. I see this kind of scenario in the words of your post. But what if its hard to see the light? Its a tough one, but whatever you choose to do, it is the right decision. 😎DD.
This is an extraordinary conversation - helpful in many ways. Thanks to all of you for sharing thoughts, knowledge, and experiences. And thank you, dpowellnt, for being so honestly responsive.
My heart goes out to you, dpowellnt! I think every guy on this site has a heightened sense of their own mortality and can relate to your situation in one way or another. I'm believe I'm prepared for my future after this life which probably colors my views on this topic. If one was in any way hesitant about what the future holds in store I'm sure that thought process might be quite different... but more about that later.
In the book, "Being Mortal" by Atul Gawande the author advocates for the idea that people need to change their mental paradigm of quantity of days to quality of life. I don't have the exact figures in front of me but I seem to recall him saying that 42% of doctors admitted to prescribing treatments for their terminal cancer patients that the doctor knew would not be effective. Most likely they did this to provide hope (even false hope) to the patient's family.
Having read this information I had a dialogue with the physicians assistant on my care team about quantity versus quality. I asked her opinion on possibly refusing what I considered end-of-life treatment and she asked why I would want to do that. I explained Gawande's conclusions with her to which she replied, "I'd just hate to see you make the decision NOT to treat and then end up regretting that decision when you're down to the final moments." I thought that was certainly something to factor into the decision-making process.
Since my goal is to encourage you, dpowellnt, I would be remiss if I didn't share the hope that I have within me. Now, I understand this is not the forum for me to "preach", but if you have any questions about the hereafter and your place in it, I'd be happy to discuss this in a private situation. You could probably care less about my opinion, but I think I understand what SCRIPTURE says about the topic and could convey that to you in a brief, understandable way. I find great hope in these promises. However, if you're not interested, no problem, my friend. I wanted you to know your post resonated with me. Thanks!
Thank you Scoofer. I appreciate the thoughts. I feel I have what I believe in deeply inside of me. I feel I know. But the alternative could be true also. My feeling is it is best to believe in a God because if you are right, it is beautiful, and if you are wrong, well you won't know. Lol.
My husband is also facing this same dilemma. His goal is to stay upright as long as possible and then make a quick exit. He’s active right now but knows he has 2 years at most. He too doesn’t want more chemo. These are such tough decisions . Praying for you and I really get what you are saying because my husband has said the same thing to me many times. God bless.
I am so sorry you are where you are, dpowellnt. I am not there yet, so my words are useless and any advice I give you, would just be stupid. I would consider Jevanta, maybe. That's just me, someone who knows nothing. You can always bail. Hope is eternal......
I am still considering that. Canadian doctors do not have a vested interest in the pharmaceutical side in Canada. So my ONC's advise will be in my interest, not a bonus on some drug or procedure.
We are waiting to see MSP will pay for it. It could be I go on that 2-3 times only to see if it is working at all. If not....
I can understand where you are coming from. I started over three years ago. Casodex then 6 infusions of docetaxel. Then Zytiga, which caused alarming high liver enzyme readings. Then to a combo trial of olaparib and cederinib. Worked for two years. Was undetectable for over a year. Now I'm on another clinical trial. Just had my second treatment. My psa is currently at 30. I heave mets on my liver and lungs and pelvic lymph's and bone. I refused to take cabazitaxel. I won't chemo again. I think some quality should come with treatment. I had an extremely bad time with chemo. If this is my last hurrah, then so be it. This thing is going to kill me sooner than later. So why suffer until then? Best of luck on your decisions.
Tha fact is; you are at the end of SOC path. Last step is Cabazitaxel.
BUT: There are may other paths, an most of them with a good QoL. Some could be short, just couple of months, others maybe you could enjoy for long time. You will know it when you try it. I will just mention some and you should read about it, consult and decide
- BAT
- Pfeifer protocol
- Lu177. Ac223 or the combo
- Lanreotide plus Dexamethason or Ethinylestradiol
- Metronomic chemo ( i.e. Cyclophosphamide)
- Rechallenge Enzalutamide/Abiretarone after Docetaxel
Regards
Rkoma
I understand where you're coming from.
I decided in April 2017 to stop all conventional treatment as I personally valued quality over quantity.
Luckily my latest psa score and psma pet scan are better than when I was first diagnosed in December 2016.
So at this stage I feel I made the right decision.
However I would never suggest anyone else should try it.
There's no right or wrong answer, so it should be entirely your own decision.
You and your family are in my heart dpowellnt. I have no words of wisdom, only empathy as my loved one is at about the same point as you except just now starting chemo after all else has failed since 2002 diagnosis. You will realize the right choice for you but just writing all the words down is hard and stark.
I have found great peace myself in this Forum and am so incredibly grateful for every person on this site.
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). I'll float on the waves and kiss my wife, write down my experience for posterity.
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