Longevity : I asked my Oncologist at MD... - Advanced Prostate...

Advanced Prostate Cancer

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Longevity

TomNew62 profile image
178 Replies

I asked my Oncologist at MD Anderson what was the average lifespan for someone like me with stage 4 metastatic Prostate Cancer on Xtandi and Lupron. He said the average was 3-5. After a period depression from this news, would like to prove him 💀 DEAD wrong. Choosing diet ,exercise and supplements. How is everybody else doing? This was about a year ago.

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TomNew62
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178 Replies
TomNew62 profile image
TomNew62

Currently PSA at .000 after a year on Xtandi.

dlestercarlson profile image
dlestercarlson

I've had Stage IV Mestatic prostate cancer now since 2011 and am still doing good. During that time my treatments have changed as the cancer has changes as well. I plan on being around for many more years.

Good Luck

Dennis

Sharksrule profile image
Sharksrule in reply to dlestercarlson

Same here 2011, stage IV G9 still going strong!

Baddawg profile image
Baddawg in reply to Sharksrule

What were your treatments?

Sharksrule profile image
Sharksrule in reply to Baddawg

RP open surgery to remove max # lymph nodes.

Started firmagon shortly after surgery. Decided not to do any radiation. Firmagon was effective for about 3.5yrs(at which time I switched to lupron)

Added casodex which lasted about 1.5yr.

Switched to enzalutamide(xtandi) which lasted about 1.5yr. Tried zytiga for 0.5yr(slowed things down but not for long)

Now in combined xtandi/keytruda clinical trial which has held the beast stable(PSA still elevated but stable. Bone scan clean. Ct scan stable) for about 1yr(ongoing). Next step? Most likely chemo...

TomNew62 profile image
TomNew62

I was diagnosed in 2013. Gleason 8 started with Proton Therapy And seeds. Cancer came back in 2015 and went to MD Anderson and started Lupron. Provenge PSA started rising in 2017 and started me on Xtandi in 2018.

FCoffey profile image
FCoffey

My oncologist gave me 3-7 years. That was 18 months ago, so I'm down to 1.5 to 5.5 years.

Like you, now I have a new goal - to prove them wrong.

While it's nice to hear from the men here who have outlived their prognosis, it proves nothing. We don't hear from the ones who died. It's called survival bias, and it taints a lot of statistics.

The truth is that none of us, PCa or not, knows when we will die. I happen to know some things about what is more likely to kill me, but I don't know when or how any better than anyone else. So I live my life to the fullest, trying to make the most of each and every day.

In that way the cancer has been a gift. I'm in better health, more fit, and focused on what really matters.

Cam73 profile image
Cam73 in reply to FCoffey

What a great reply!!

Bebby1 profile image
Bebby1 in reply to FCoffey

I agree

Everyday is unknown.... to all of us

But the people who have to hear somebody predict their mortality makes these people more aware

The rest of us just assume we’ll be old and slip away in a comfortable chair

Forewarned is forarmed

monte1111 profile image
monte1111 in reply to FCoffey

Very good. All wrapped up in an apricot kernel shell. From 1 and a half to 2 and a half, to now many years. What's the third guess going to be? When MO gives the third I think I'll look at her and say "You look like you're good for twenty more." See how she sleeps at night.

Scorpio99 profile image
Scorpio99 in reply to FCoffey

Its good you can look at things that way, for me it was pure hell until the last day of Lupron, after surgery and radiation, and I was proclaimed "cancer free".

monte1111 profile image
monte1111 in reply to FCoffey

59 likes. Wow. Would make it 60 but I can't vote twice. Worth the re-read. Enjoy.

FCoffey profile image
FCoffey in reply to monte1111

Thank you. I hadn't revisited this post in quite some time. I'm pleased that it has proven so popular.

Shooter1 profile image
Shooter1

Given 12-18 mo. over 24 mo. ago...now 5 yr average, leaves 3 yrs, but planning to be on upper edge of parabolic graph. Like 10 yrs or more. PSA bottomed at 0.122 and has been there for last 6 mo. after setting at 0.140 for six mo. before that. Xtandi at 86 mg reduced dose for 10 mo. and have my life back. Was complete invalid on 160 mg dose of Xtandi for 4 months after chemo end. Started Xtandi half way through my 9 dosed of chemo. and QOL went down hill for 7 mo. until I cut dosage.

RyderLake2 profile image
RyderLake2

Diagnosed in 2013 with a PSA of over 1700. Currently on Zoladex (goserelin acetate), Xtandi (enzalutamide), and Prolia (denosumab). I am now at six years and I plan on battling the beast for a good many more years. Stay positive, learn as much as you can, and don't ever give up.

Longterm101 profile image
Longterm101

Amen!! My doc told me to drink gator blood !!!!

HOPEFULSPOUSE profile image
HOPEFULSPOUSE

DR never should have said this. Shame on him. My husband's initial MO in England, where we were living at the time, told him 5 years. That was 6 years ago.

whatsinaname profile image
whatsinaname in reply to HOPEFULSPOUSE

The doctor ONLY gave him the average/median life span. And, the doctor was dead RIGHT.

The patient pushes the doctor to estimate his life span and then gets perturbed when the doctor tells him what the average is. If you don't want to get perturbed, don't ask the doctor.

I am a severe critic of most doctors, but in such cases they are NOT TO BLAME.

Bedrich profile image
Bedrich in reply to whatsinaname

Yes I agree. I know it's serious, mestatase in bones and a lot of tired. But I just don't want to ask the doctor this question.

whatsinaname profile image
whatsinaname in reply to Bedrich

100% correct, Bedrich. Who on earth can accurately tell you the time that you have left ??? If, no one can, then why ask a stupid question ?? And compound matters by feeling depressed and go around blaming the doctor ??

Cheers, Bedrich.

Bedrich profile image
Bedrich in reply to whatsinaname

Yes you said it exactly. No one can say when I will be here.

SeosamhM profile image
SeosamhM in reply to whatsinaname

Darn it, Whatsin! You are positively ruining the blame part of my daily "pity and blame" routine! ;) - Joe M.

whatsinaname profile image
whatsinaname in reply to SeosamhM

Good humor, Joe !!!

Enjoy life !!!

Metungboy profile image
Metungboy in reply to Bedrich

Don't ask if you don't want an answer. The problem is you may make treatment decisions that don't match your personal circumstance without the information.

Good luck and best wishes with whatever decision you make.

Daddyishealing profile image
Daddyishealing in reply to HOPEFULSPOUSE

I know a woman given 3 months tops and its 7 years later. No we do not hear from the dead as those mentioned, but i have been on sites where the members name gleason score dx date are listed and even while dying they posted, so it is possible. I forgot what site i found this on. But i went on trying to see what the median really is and it was somewhat depressing but science keeps growing so doesnt the median change as the field grows?

ctarleton profile image
ctarleton

I've been on added Xtandi for around 29 months, and still going. Originally diagnosed back in late 2013 with many mets and a PSA in the thousands. A 5 year 5 month survivor, overall.

For the "statistics" from the prior clinical trial studies of Xtandi, see Sections 6.1 and 14 of the Full Prescribing Information:

astellas.us/docs/us/12A005-...

Note the very different conditions/criteria for the 4 major studies in Section 14.

When looking at the Kaplan-Meier curves, remember that 50% of the participants on an Overall Survival graph (or similar type of criterion) where it crosses 50% on the Y-axis on the left side of the graph experienced the non-survival event earlier than the Median time, and that the number of longer term survivors will appear as data points on the curve at the lower right.

(As mentioned in another Reply, some of the men who would have been on the upper left of such curves would less likely to be replying here. Some who may already be in the middle or destined to be on the lower right side of the curve would be more likely to be here and replying as individuals with their anecdotal experiences.)

We all want to be on the "tail end" of those curves.

Which reminds me of the hopeful classic "The Median Isn't the Message" by Stephen Jay Gould.

people.umass.edu/biep540w/p...

Life's here for meaningful living each day, .... not just being another day closer to dying.

Charles

Daddyishealing profile image
Daddyishealing in reply to ctarleton

Ty for gould link. Famous for his literary criticism, i never read this and it is brilliant ty!

monte1111 profile image
monte1111 in reply to Daddyishealing

Stephen Gould died 10 years later "He survived the illness through experimental treatment, but died of an unrelated cancer, in a bed in his library among his beloved books."

Stegosaurus37 profile image
Stegosaurus37 in reply to ctarleton

This is the Age of Euphemism. We no longer die, we "experience a non-survival event."

Gadzooks.

ctarleton profile image
ctarleton in reply to Stegosaurus37

Ha. Ha. Ha. Ha. Good one! (I only worded it like that because at least one of the Xtandi studies measured something akin to a "survival" until disease progression, instead of Overall Survival.)

monte1111 profile image
monte1111 in reply to ctarleton

Great read. Enjoyed it much. I mean the Gould essay.

GeorgeGlass profile image
GeorgeGlass in reply to ctarleton

did you start your Xtandi while you were still ADT sensitive or resistant?

ctarleton profile image
ctarleton in reply to GeorgeGlass

Resistant. After a PSA roller coaster from an original 5,006 at first diagnosis to 1.0 then back up to 95.0. (You can click my User Name to view my treatment summary.)

Magnus1964 profile image
Magnus1964

Don't let anyone tell you how much time you have. When I was diagnosed the surgeon told me I had 5 to 10 years, that was 27 years ago. Done with conventional and complimentary medicine.

charlesmeyers1964 profile image
charlesmeyers1964 in reply to Magnus1964

mostg men with a psa of 1,000 have a very good chance of dieing soon. if they have a quick chanvge and their psa drops good its still not a guarantee that it won't jump up fast again

charlie

alangeorge profile image
alangeorge in reply to charlesmeyers1964

That's really positive Chalie :((

Bedrich profile image
Bedrich in reply to charlesmeyers1964

Well I don't know, I don't think that's right. I've read stories of people who have been here for a long time. I see that low PSA is not a guarantee of long life. My PSA was the most 21.7 Never went to 0. Nothing helped long. Zitiga Docetaxel now Jevtana. Each maximum of 6 months.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Bedrich

Have you had any genetic testing? I am BRCA2+. As a result I am prone to aggressive PC, which unfortunately I have been dealing with since June 2018. Gleason 10 with pelvic bone mets. Zytiga/prednisone failed after just 6 months and RP. Now on PARP inhibitor for past 2+ months, along with having recently completed Provenge immunotherapy. Staying positive.

Bedrich profile image
Bedrich in reply to HopingForTheBest1

I didn't have DNA testing. I have to ask if they did it without knowing it. But I know the doctor tells me that immunotherapy is not appropriate for me because of my type of tumor. I'm trying to be positive, but it's not always easy.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Bedrich

Totally agree!

As for the genetic test, I used color.com which was recommended to me by an Oncologist. You simply spit in to a tube and mail it back to the lab. Takes 4 weeks for results, with a detailed phone consultation from a genetic counselor included. Not expensive.

By having the test I was able to use precision medicine to determine my current course of treatment, a PARP inhibitor.

whatsinaname profile image
whatsinaname in reply to HopingForTheBest1

I've just spent US$ 4300/- approx for getting my genomic testing done by (Roche) Foundation One, based in the US. Lets see whether its worth it or more money down the drain, like the other treatments I have taken thus far.

Kevinski65 profile image
Kevinski65 in reply to HopingForTheBest1

How and where can this be done?

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Kevinski65

Go to color.com

Pierreb profile image
Pierreb in reply to charlesmeyers1964

Most is not all. We should all believe that we or our loved ones will be one those that do not fall in to that statistic. There are a few men in this post who have survived much longer than the statistics. The funny thing about statistics is that no matter what they are you never know what side you will be on. I prefer to believe and hope for the best.

I am 100% alive right now. If you are reading this, you are 100% alive too.

whatsinaname profile image
whatsinaname in reply to

I am alive and kicking. But, to claim that I am even 80% of what I once was will be a blatant lie. Partly its age, of course. But, mainly its the cancer and the effects of all the drugs/treatments that I have taken (in the last 14 months).

Yes, I know, I cannot be 80% alive and 20% dead.

i didn't change my diet, nor exercise and i'm on my 11th year. what i did do is hit the cancer early and hard so don't believe what they say everyone reacts differently

charlie

whatsinaname profile image
whatsinaname in reply to charlesmeyers1964

I too haven't changed my diet or exercised. I also don't pray :-)

But, I am just 14 months out. I am sure if I die shortly, the above 3 reasons will be cited by gloating relatives :-)

monte1111 profile image
monte1111 in reply to whatsinaname

You are so funny whatsinaname. Gloating relatives. That is funny, funny, funny. Know an in-law who is really anxious to move into my house. Taking her out to pizza for birthday event. It's on my dime, cause, you guessed it, she doesn't have a dime. Gloating relatives. Can't stop laughing. Enjoy.

whatsinaname profile image
whatsinaname in reply to monte1111

Thank you, monte1111 :-) Glad you enjoyed it because it was meant to be funny :-) Yes, Sir, enjoy life to the hilt :-) Cheers, monte1111

Costarica1961 profile image
Costarica1961

I got less according to surgeon and urologist three years later there no experation date stamped on me in relation to this desease

Scorpio99 profile image
Scorpio99

Tom, I wish you the best of luck. I'm curious how far your prostate cancer spread?

TomNew62 profile image
TomNew62 in reply to Scorpio99

Just a couple of lymph nodes. And it has shrunk since 2016 to 2018.

Zetabow profile image
Zetabow

In Nov I was diagnosed 1386 PSA extensive Mets to bones, Oncologist said 44 months from his experience and what he's seen on the PET scans. Got my PSA down to 0.4, blood counts are good so I'm feeling much more positive about my future. I'm sure I will hit a few bumps in the road, I have accepted my fate but I'm also not going to give up fighting it either.

Despite the pain and fatigue I'm trying to maintain a normal active life, my friends tell me to take it easy but I tell them "If I don't try and live my life to the full then their is no reason to keep living" We need goals and purpose to keep going, even if it hurts a little.

Kaliber profile image
Kaliber

last October I was dx'ed with a psa of 1400 and so many mets , my mets had mets. my blood work looked VERY grim. a lot of bone pain too. I asked my doctor how long I had as well. my wife was with me. my onc doc said ( with " THAT " look on his face ) that everyone is different ( a good answer BTW ) and I should get my affairs in order and spend all the quality time with my loved ones as I could ..... and then brought the hospice nurse into the room to talk to both of us and begin to establish my hospice services. . I'm on Lupron - Xtandi - Zometa. well ....... it's over 5 months later and my blood work has ALL returned to perfectly normal and my psa is 0.4 and still dropping. I'm dramatically better than 5 months ago. I'm planning to hang around for a lot longer like everyone else here .... people are living longer with the newer meds like Xtandi and a large number of trials and new treatments are in the pipeline as well. I'm absolutely going to keep a positive up beat attitude if for no other reason than to help my loved ones go through this with me. it's not just about me, even though it's sometimes hard to keep that in mind. we'll all fight this hard ... we got this.

Irun profile image
Irun

I was told 2 to 10 years but think 3 to 4. I was 49. Now at 54 I am still running ultramarathons round the world and next tuesday set off for the 560 mile Camino De Santiago. I have now been on Zytega (abiraterone) for 3 years following chemo and radiotherapy.My pca was spread to lymph nodes on diagnosis in my chest , neck and pelvis but nowhere else.

I am glad the doctor answered my question as it stopped me burying my head in the sand and made me realise that I need to live every day.

You know, you only have two lives and the second one starts when you realise that you only have one!

Fdccs profile image
Fdccs in reply to Irun

Nice to see you here Irun. I'm Gemma123 on our UK site and you've helped me a lot. Thank you. Keep running

E2-Guy profile image
E2-Guy

15 years ago the doc that did my biopsy told me that "I have the real deal" and estimated that I had about 5 years. Today, at 76 I still feel (and frequently act) like a kid!

bryson43 profile image
bryson43

Diagnosed in August 2005 with stage 4 already escaped to right hip Gleeson 4+4 and PSA 24-only treatment has been hormone therapy ,chemo and Xtandi -PSA is now 0.008 so my survival is 14 years in August this year

GeorgeGlass profile image
GeorgeGlass in reply to bryson43

when did you do the chemo? How long did the Lupron alone last for before you added Xtandi?

alangeorge profile image
alangeorge

On Bicalutamide and Zoladex PSA 2200 G 4+4... You can prove them all wrong add alkaline 9.5pH water and -ve Ions to your list. Oh and +ve affirmations absolute must :)))

With you all the way, literally!

Alan

GeorgeGlass profile image
GeorgeGlass in reply to alangeorge

what are -ve Ions to your list. Oh and +ve affirmations ?

Agc007 profile image
Agc007 in reply to GeorgeGlass

Hi I have seen many variations of affirmations George. The best information however; I came across just very recent from Dr Wayne Dyer he says I am that, I am.. and then the affirmation goes in place of ‘that’ so for example I am perfect health, I am. Plus you can do breathing exercises to that positive affirmation another example; I am abundance, I am.

I read a personal account of a cancer research book, some guy from Australia, He is suggesting that our body because it’s an electrical system has negative and positive ions and generally speaking we are full of positive irons which is not good for defeating cancer or stabilising cancer or even curing cancer so the deal is to find a way to get more negative irons from the atmosphere and from the certain materials that give off negative irons. I wear some of that material.

Alan

Alancochlan@gmail.com

Metungboy profile image
Metungboy

I agree with a bit of what Nalakrats says but not much.

I agree with the idea that no one knows. I definitely don't believe that the doctor should not have given an opinion based on the statistics of survival. Without that it is difficult to make important decisions about finance priorities et cetera.

Personally I would say there is no God, so no one knows is accurate. I respect others' views however.

All the people who write in with their stories about how much longer they have been alive than was suggested by their median survival prognosis, bias what is written in these forums. Those that have died earlier than their median survival, and there will be 50% of them, clearly can't write their stories. So "battling the beast" might make you feel better but makes no difference. Staying fit exercising and enjoying life makes a great deal of difference to your quality of life and probably a small difference to its length. Attitude makes no difference to length but does to quality.

Stories of people who live longer than projected MEDIAN survival do not change the accuracy of the initial projection of survival

whatsinaname profile image
whatsinaname in reply to Metungboy

Well said, Metungboy. I agree with you. Cheers !!

tom67inMA profile image
tom67inMA in reply to Metungboy

Yes, there is survivor bias here, but...

...based on what I've read recently (blog.dana-farber.org/insigh..., exercise may play a huge role in how long you live with cancer, but only about 30% of patients do it. There may be much to be learned from those who have far surpassed the median survival. The people that are alive and doing well years after diagnosis seem to have a disproportionate number of vegans and exercise nuts.

Let's not forget that the statistics cover a population, not individuals. There's always that one patient in the newspapers who was about to die, but then tried a new treatment and it worked so well that now they can't find any cancer.

And finally, over time new treatments are becoming available, rendering the statistics from just five years ago yesterday's news.

So by all means use the diagnosis and statistics as a reason to take the disease very seriously and "put your affairs in order", but also know that you can have a better than coin-flip chance of beating the median.

whatsinaname profile image
whatsinaname in reply to tom67inMA

Have you taken into account the element of LUCK (pure good luck) in your studies ??? Also, do you think that PRAYER helps advanced cancer patients get greater remission and hence a longer life ?? Just asking as I would like to know your views on these points. Thank you, tom67inMA.

tom67inMA profile image
tom67inMA in reply to whatsinaname

Luck is the most important contributor to outcome, but I don't talk about it much because it's not something anybody can control. A well designed study will have many participants so that the randomness of luck averages out between the control and test groups. I don't know how good the exercise studies actually are, as the link I posted above isn't a study but an article talking about the results of studies.

In my personal experience, I was very lucky to have a great response to Lupron, which allowed me to resume running during chemo (For all practical purposes I couldn't run at diagnosis and for a few weeks after due to pain and a catheter from bladder surgery). My opinion is that exercise is like taking a statin or metformin. It won't have a dramatic effect on cancer in the short term, but over months and years it helps maintain your overall health and probably makes life for the cancer cells a little more difficult.

As for prayer, it may work as a form of meditation, but I don't believe that God will hear prayers and magically cure cancer. Personally, I'd rather believe my cancer was caused by bad luck than by the deliberate actions of an omnipotent god. Such views have made for some uncomfortable conversations with my mom who is quite religious.

whatsinaname profile image
whatsinaname in reply to tom67inMA

Thank you for the detailed, well thought out reply, tom67inMA.

I agree with you on the "luck" part. I'll skip the part on "exercise" :-)

But, the part I found really interesting were your views on prayer.

Wholeheartedly agree with you there. What I find curious is that

despite being severely discriminated against in religious matters,

women are the biggest and most fervent supporters of the same.

Yep, my female relatives border on the fanatical. I keep a safe

distance from them :-)

Thanks again, tom67inMA, all the very best to you.

tom67inMA profile image
tom67inMA in reply to whatsinaname

If it makes you feel any better, I should be adding strength training to my routine and not just running all the time, but lifting weights is so boring! :-)

whatsinaname profile image
whatsinaname in reply to tom67inMA

I agree, lifting weights is BORING. But, for me, so is RUNNING.

And, running ALL THE TIME ??? I won't say more :-)

monte1111 profile image
monte1111 in reply to whatsinaname

You are on such a roll whatsinaname. I see you running down a street in Bombay, a group of gloating relatives, and a herd of fanatical female relatives right on your heels. And through the sweat on your face and through your clenched teeth you are mumbling, "Well, maybe running isn't so boring after all." Enjoy.

whatsinaname profile image
whatsinaname in reply to monte1111

Hahahahahahahahahahahahaha,lol, lol, lol, lol, lol, lol, :-)

VHRguy profile image
VHRguy in reply to tom67inMA

I used to think that about weights too. Due to my work schedule I needed an efficient workout plan, since I went before breakfast on a workday! I usually did this two, and occasionally three days a week. Usually Monday and Thursday.

My workout pattern was 6-8 minutes warm up on an elliptical, then a series of weight machines. I pick ones engaging as many muscle groups as possible (e.g. a rowing machine for back and biceps, vs. isolated machines for each group). I do the "Nautilus" weight method, at least I call it that because it was in a book for those machines years ago. It's one set, heavy weight, to achieve "failure" (can't make another rep), within a specific number of reps. In my case, 8 to 12. So once I can make 12 reps at a weight, I increase the weight to drop to the 8 rep limit. Done in sequence, this will keep your heart rate aerobic. Twenty - thirty minutes on around 8 machines. Then about a 6 minute elliptical warm down, then stretch. Weights and aerobic workout in a single session. Rather gratifying.

This is actually kind of a fun method, with measurable results in an efficient plan. Now, with no testosterone the weight/rep gains were painfully slow, but it does give clear goals.

tom67inMA profile image
tom67inMA in reply to VHRguy

Thanks for sharing your routine! I'm still in the recovery phase from chemo, so the body goes wonky whenever it approaches its limits in any fashion. Doing reps to "failure" is quite risky at the moment. Last time I tried it seemed my sciatic nerve got all angry. Hoping those effects go away as chemo recovery continues.

VHRguy profile image
VHRguy in reply to tom67inMA

You do have to respect your body's limits. I back off the weight in a couple of exercises due to limits with a couple of my joints. For those, I just do 13 reps at the highest comfortable weight.

Daddyishealing profile image
Daddyishealing in reply to Metungboy

I admire your strong opinion. I, however, disagree, humbly with this statement, "Attitude makes no difference to length but does to quality." This has not bern studied and proven. Mental state can change the bodys ability to fight for better or worse and that i do believe is studied by neurologists, though being so subjective may not be questifiable. I personally watched someone i love begin to die once heard stats of a year to two. If she didnt mentslly give up, i can not be sure shevwould have lived longer, but i did see how her attitude took part in taking her life sooner. Just my opinion. I respect all of your words.

in reply to Daddyishealing

Attitude isn't everything, it's the only thing (you have control over). You do the best treatments available and try to make the best of what you get.

whatsinaname profile image
whatsinaname in reply to

I very strongly disagree.

Metungboy profile image
Metungboy in reply to Daddyishealing

It has been studied. Evidence is clear. Unfortunately believing something doesn’t make it true. I will find the studies and post them on this site.

whatsinaname profile image
whatsinaname in reply to Metungboy

I will be eagerly looking forward to reading them. Thank you.

Metungboy profile image
Metungboy in reply to whatsinaname

Here is one. I will find the others soon. I looked at this issue several years ago and found multiple references. This one is a reasonable start.

Cancer. 2004 Mar 15;100(6):1276-82.

whatsinaname profile image
whatsinaname in reply to Metungboy

I read the conclusions and totally agree with them. Of course, they apply to patients with NSCLC.

But, they should apply to other cancer patients or any patient for that matter.

I do believe this "be positive" bullshit is highly unprofessional.

At one of my first meetings with a radiation oncologist, I asked the quack what the plan was if everything did not go as per his expectations. He rudely told me that I should "think positively" and that by expressing "doubt", I was setting myself up for failure.

I kept my calm and asked him whether he had a Plan B. He said he did not need one as this was sure to succeed. Since my wife was me and as you guys know I am a thorough gentleman, I didn't pursue the matter further. I had wanted to give him the middle finger, but I held back.

I found another radiation oncologist, someone who had a PLAN B & PLAN C to fall back on. That even that didn't succeed is another matter. Put it down to my lack of "positive thinking", my refusal to change my diet, my refusal to pump iron and my refusal to start praying for mercy to the Almighty :-)

Btw, all of this happened in Bombay. You guys in the US probably don't have as much excitement thrown in :-) All for free :-)

Cheers, Everyone.

in reply to Metungboy

I agree that believing something doesn't make it true. My point is that you have to do everything you can to try to keep a good attitude.

Metungboy profile image
Metungboy in reply to

I agree but the important reason to have a " good attitude" is that there is clear evidence of quality of life enhancement.There is no evidence of length of life enhancement.

I think being positive as is as wrong as being negative.

Being accurate and realistic is by far the best.

When people believe that their positive attitude will save them it is akin to believing in prayer.

Prayer clearly is evidence free and in my mind quite bizzare.

It, like deluded positivism, may make people feel better at the time but does nothing else.

Have a look at this if you are game.

He is an Aussie atheist like me but very smart.

youtube.com/watch?v=JipYDDX...

whatsinaname profile image
whatsinaname in reply to Metungboy

Superb stuff, Metungboy, thank you very much :-)

GeorgeGlass profile image
GeorgeGlass in reply to Metungboy

Atheism is a religion. Atheists try to push their beliefs on others far more than any other religion except maybe the muslims.

Metungboy profile image
Metungboy in reply to GeorgeGlass

You are kidding?

In Australia the government is trying to push a “religious freedom “ bill which, if it passes, will allow religious people to break the laws of the land if their beliefs are in conflict with those laws.

What a disgrace!

Talk about inflicting beliefs on others!

No hiring of gay teachers in religious schools for instance.

GeorgeGlass profile image
GeorgeGlass in reply to Metungboy

The founders of America fled England so they would have religious freedom and not controlled by government. I don't know what Australia was founded on but there's nothing wrong with not hiring gays if it's against the beliefs of the religion. There are tons of other schools that are not religious or their religion allows homosexual acts from their practitioners. It doesn't make sense to be gay and want to be part of a religion that believes homosexuality is a sin. Many of the gays just want to tear down organizations/religions that dont fit their behaviors. The homosexuals can start their own religion and hire all the gays they want.

Metungboy profile image
Metungboy in reply to GeorgeGlass

I couldn't disagree more!

What about female circumcision?, ok and sometimes mandated in some religions.

The laws of the land should always have sway over religious laws.

I am all for having people believe whatever they want, flat earth, son of god, Buddha , anything is and should be allowed.

Not actions though and not differential taxes.

Freedom of thought and belief not freedom to act against the law of the land based upon those beliefs.

Not freedom to treat me differently to you based on our differing beliefs.

If Jesus was alive today I bet he would support my view, not yours

GeorgeGlass profile image
GeorgeGlass in reply to Metungboy

Well i disagree. So we both disagree. You're wrong about every point. People have freedom to take orders however they want. That's freedom of speech. Governments after the religion of atheists. Governments are often dangerous when they become to big. Governments make laws that should be good for the majority. When special interested groups hey pandered to, the majority suffers.

GeorgeGlass profile image
GeorgeGlass in reply to Metungboy

Jesus either super your views. That's why the Bible says that homosexual acts are a sin. You need to start your own religion but it will be against the teachings of God. And by the way, Jesus is still alive. He sure at the right hand of God, in heaven. You can take to him whenever you want, with prayer.

everyone is different , some live long and others not so. everyone reacts to the cancer. some is the drug or have the $$$ to do experiment trial drugs

charlie

pakb profile image
pakb

My husband will be 2 years in August. Diagnosed at age 49. PSA >677, multiple mets, had been a year and a half of sweats, fever, catheterizing... before diagnosis and PSA test. He did lupron and Docetaxel as soon as diagnosed and now Zytiga and Prednisone since 3/18. PSA currently 8.9. He is in no pain. He did decide to go completely plant based vegan at diagnosis- I think he needed to feel he could do something in his own control. He has stuck with this diet. He also works out and is active- but always was before.

I'm happy our docs didn't give any longevity range. We decided to really be grateful for each day anyway- but I think it gave us hope that he said that "there are no stats for longevity with current medications and protocols" and that they've realized how different each individual is.

Totally agree with a lot above. Get affairs in order (should anyway) and live each day with no regrets (should anyway!).

GeorgeGlass profile image
GeorgeGlass in reply to pakb

any issues with blood pressure are heart concerns on the zytiga?

pakb profile image
pakb in reply to GeorgeGlass

He hasn't had any issues with either of those. It will be 2 years in March!

Jimpit profile image
Jimpit

I also was told less than 4 years to live with stage 4. That was 10 and 1/2 years ago. Still going strong. Keep that positive attitude and get out there and enjoy life.

michael00 profile image
michael00

I'm only 1 year into it but doctor never gave me a time and i decided not to ask. I hope to be one of the long timers and stick around. I'd like to know i can keep being a pain in the arse for somebody somewhere each day.

Litlerny profile image
Litlerny

Interesting. conversation, folks. There seems to be a statistical bias regarding those who have died and can’t vote on this issue. However, their next of kin could on their behalf. Honest! It happens in Chicago all the time. 😉

Statistically speaking, 50% of you will be 90% correct 25% of the time, adjusted for a margin of error of 5-10% for the 15% of you who still text while you drive and will probably die 35% sooner. The only number I’m pretty sure is correct is that 100% of us will be dead at some point in the future. To paraphrase Guru Yogi (Berra), 90% of life is half mental. Gotta run...I’ve got a 9:30 tee time. 🏌️⛳️😎.

Live life like there’s no tomorrow. One of these days you’ll be right.

whatsinaname profile image
whatsinaname in reply to Litlerny

Excellent humor, Litlerny :-)

monte1111 profile image
monte1111 in reply to Litlerny

Would like that twice if I could.

pjoshea13 profile image
pjoshea13

Tom,

Why ask for the average? You need to know how the top quartile fares.

I have a number of old posts that look at the evidence for supplements, etc. But I suggest that you start with my posts on inflammation & then move on to those on coagulation.

Best, -Patrick

larry_dammit profile image
larry_dammit

Yes my oncologist said about the same. 50/50 chance of 5 years. I love to read about the guys here that are going longer 😀😀😀. Fight that monster. In working on 33 months myself 🙏🙏🙏🙏

Survivor1965 profile image
Survivor1965

If you ask them they will give you a time based on statistics, because that’s all they really have. I was Gleason nine with bone Mets in my spine, ribs, femur, and frontal bone and many lymph nodes in my abdomen. In May 2014 they gave me five years, so that would be next month! And here I am! Now this past February they told me 18 to 36 months even though my PSA is zero and my lesions are stable. If you looked at me not knowing you would never know I was sick and I live a decent quality of life. Yeah the meds suck, but being alive and hanging out with my wife and my kids and getting to see my granddaughter is wonderful! Keep the Faith

I bugged both my drs at MD Anderson until the day I finished my radiation.

Couldn’t have gotten an answer to that question if I would have threatened their lives. Not sure I really wanted an answer just the best treatment they had to offer and I think they did that. Very optimistic place I think everyone with this shitty disease should get a opinion from a comparable center.

407ca profile image
407ca

If you don't want to know then don't ask. Real simple. It you do want to know then ask, and expect an honest answer. Should they tell you the median? Why not, provided you asked. That info is readily available anyway. Nobody can say how long anyone will live but median survival rates are known.

john205 profile image
john205

I am in a very similar situation. Diagnosis about 10 months ago with Stage IV. On Lupron and after 6 cycles of docetaxel, my PSA has dropped from 148 to 0.16 and is still dropping, and my bone scan hot spots are all cold now, so I am pleased. Diet and exercise are important for your overall well-being but don't lose track of medical treatment. If you are not connected to a major research center, make contact. I have relationships at 2 prostate cancer groups at big cancer centers, in addition to my own oncology center. I keep them posted and seek their advice as things develop. Keep in mind, the 3-5 is an average, and better than it used to be. The range is much wider, with potential upside with new treatment. There are several things that may influence the outcome. How was your response to initial treatment? Ask about additional androgen deprivation drugs and chemotherapy. Ask about mutations in your biopsy that may qualify for later treatments like a PARP inhibitor or immunotherapy. Also, keep in mind that the prognosis data are based on treatments with older standard therapy and not newer and current standard treatment, and the prognosis based on newer treatments may not be known yet - it's too soon. And there is all sorts of stuff in the medical pipeline currently under investigation, some of which may become available during the 3-5 year time frame. Finally, you may be eligible for investigational agents when your current treatment stops working. Always ask your oncologist what is new, and about things you have heard about through the grapevine.

Daddyishealing profile image
Daddyishealing

All of you, ty for the inspiration, the realization, and the laughs. In awe of the great attitudes!

gleason9guy profile image
gleason9guy

I've not asked the doctors the hard questions. The oncologist probably wouldn't answer them if I did ask. My first urologist was completely up front with the current stats if I choose NOT to be treated. My wife DID ask my current urologist those hard questions though. He said, "If something should happen in eight years, you need to understand that we did everything that we could do." So yeah. Everyone has a shelf life. But I figure that mine is a bit more obvious and it's a gift, in that we can put our affairs in order for that day. But then again, who knows. I could get tagged by a speeding bus tomorrow. Stay positive and expect the unexpected.

Jimdoud1 profile image
Jimdoud1

About the same prognosis as you. 20 months out now. They are going to be wrong however. Gods will be done!

The future is hypothetical. Trying to predict it is unlikely to be accurate and more likely to lead to a lower quality of whatever life you have left. There is only time that you can live and that time is now. Get going!

whatsinaname profile image
whatsinaname in reply to

Agree here, 100%.

jkholmes profile image
jkholmes

My Dr says no one knows. Very unprofessional to give a time frame. I would tell him to pound sand. Only God knows

whatsinaname profile image
whatsinaname in reply to jkholmes

Agree with you except the part about God knowing :-)

We do not know for sure whether a God exists or not.

Of course, more than 90% on this board are SURE that God exists :-)

Good for them :-) To each their own :-)

Cheers and all the very best, jkholmes. Your doctor is a professional.

GoBucks profile image
GoBucks

"There are three kinds of lies: lies, damned lies, and statistics." I never asked my Dr. because I didn't know how long I had before I had cancer. Did anyone else? Sorry, but I am too busy living. BTW, everyone should always "have their affairs in order". It is common sense.

whatsinaname profile image
whatsinaname in reply to GoBucks

Did you know that "common sense" is not so common ??

That is why a reminder to "get their financial affairs in order" is a good thing.

GoBucks profile image
GoBucks in reply to whatsinaname

Good point.

in reply to whatsinaname

I think it's a good idea for everyone to have their affairs in order, regardless of their current state of health. Lots of people get no warning when they reach the end of life.

whatsinaname profile image
whatsinaname in reply to

Agreed.

Sxrxrnr profile image
Sxrxrnr

When you leave out question if castrate resistant or not, and all existing co-morbidities, the question, statistics, and debate are all irrelevant.

Statistically the answers to these questions are of utmost importance to the discussion.

whatsinaname profile image
whatsinaname in reply to Sxrxrnr

Didn't quite get you. Could you re-phrase, please ??

Sxrxrnr1 profile image
Sxrxrnr1 in reply to whatsinaname

What I suggest is that any question asked of your physician of how long have I to live with my advanced PCa depends on many variables beyond a diagnosed of advanced PCa.

Examples:

1. Co-morbidities. Do I have diabetes, a bad heart, Aids, kidney disease or any of a multitude of potentially fatal health disorders that are possibly going to kill me before my advanced PCa will.

Overall survival means when will I die,,,,not just a PCa specific death but from any cause, including getting run over by the proverbial bus.

2. Have I become completely castrate resistant, not only from standard first generation Lupron’s, Casodex, Flulitimide, etc, anti anti-androgens, agonists etc, but additionally 2nd generation Zytiga’s Xtandi’s etc.

If not castrate resistant to all of these, you could live for many, many years. If castrate resistant your chance of an extended life expectancy is quite problematic unless some of the targeted immune therapy drugs(Keytruda, Opdivo, etc) or LU xxx infusions such as Lu 177 begin to bear fruit,,,,which hopefully they will in order to wean men from the devastation of hormone therapies.

Non castrate resistant you could survive indefinitely until a co-morbidity introduces you to your maker. Castrate resistant, you are damn luck to make 5 years or even 3 in many cases.

Without a full disclosure and understanding of these variables, my point is that a generic question of how long might I live,,,,statistics are meaningless.

Additionally into this mix I have long strongly suspected that the aggressive therapies prescribed to save our woebegotten butts from the ravages and deaths from this disease,,,in fact take far too many of us to an early grave. There is little argument what it does to the QOL for the statistically benefits they provide in overall survival.

I have long been astounded at one often published statistic now that we are into the subject.

One man in 6 or 7 is diagnosed in the USA with PCa. I’ll buy that.

Then it is suggested that only 1 in 6 or less will ever die from it. Do you believe this us true?

My point goes as follows.

PCa in general is a disease of older men hitting a peak number diagnosed after age of 65.

What else happens at 65,,,it is the start of a vast myriad of possible fatal diseases.

So one is diagnosed with PCa at 65, has his RT or RP, has 5 years of throughly comprised QOL in a majority of those treated aggressively, but is deemed cured. At 72, has a stroke, heart attack, diabetes has caught him, run over by the bus.....,,,,guess what,,,,,his death goes into the winner’s circle as a cured of PCa victor.

Statistically if he had undergone no treatment at all, 10 year survival is very close to 100 percent,,5 years so close to 100 percent the difference is almost background noise. And with little impact on QOL.

One other small point. Everyone knows of those who have had RP, RT, years of ADT, etc. and are alive and kicking 15 years later. Going back to where I mentioned that only some 15 percent of men diagnosed ever will die a PCa specific death. That suggests that 85 percent will not,,,,,those numbers plus or minus in a fairly tight circle are regardless if the men were treated very aggressively or had no treatment at all.

Only 2 long term studies have been done on this topic. Confirmation by these 2 studies is quite enlightening.

Sorry you asked what time it is, I went off into how to build a watch.

Please excuse typos

whatsinaname profile image
whatsinaname in reply to Sxrxrnr1

Good reply. Thank you, Sxrxrnr1

Mamabakes994 profile image
Mamabakes994

So many positive men! I love it! Keep it up!!!

whatsinaname profile image
whatsinaname in reply to Mamabakes994

Despite the immense "positivity", most of the men just cannot "keep it UP" :-)

Proving my point that being "POSITIVE" is not enough.

Just kidding :-)

Mamabakes994 profile image
Mamabakes994 in reply to whatsinaname

I know too well, but with my husband being positive is enough for me!

whatsinaname profile image
whatsinaname in reply to Mamabakes994

All the very best, Mamabakes994.

Mamabakes994 profile image
Mamabakes994 in reply to whatsinaname

All the best to you too!

Molman profile image
Molman

Hi Tom, I too am stage 4 Gleason 9, and will be on year 4 from June 5. Let's prove the doctors wrong. Hang in there. CLEMENS

TomNew62 profile image
TomNew62 in reply to Molman

Thanks

Don't worry about how long you will live, worry about how you will live.

whatsinaname profile image
whatsinaname in reply to

Absolutely.

Molman profile image
Molman in reply to whatsinaname

Thanks Gregg, you are so right

GoEZ profile image
GoEZ

I was talking to my doctor one day and he asked if I was going to work during my treatments. I told him I had 10 to 12 more years before I could retire. He told me I would be lucky to get ten. While next June will be ten years and I feel good. If I feel much better I will be forced to get a job. As fast as things change now, you could be living a long life. Medical discovery's are coming fast and furious for prostate cancer. Just shorten your vision and enjoy your now. There are way to many thing in the pipeline to worry about a grim future that many never come to past. Enjoy your now.

in reply to GoEZ

Right on. I've had so much more peace learning to live in the eternal now.Time becomes much less relevant. We still plan for the future, but we exist in the moment.

DoggieDaddy profile image
DoggieDaddy

Tom...I’m assuming you’ve been through ADT+3? I don’t have the experience with Xtandi as my cancer was “ regionally contained “ and I’m out of surgery 13 yrs. But, you’ve got MD Anderson on your side and there is no better place to be.

Best regards,

John S. Prostate Ca. Survivor since 2005

I was DX in 7/2017 with Gleason 4+5=9 with examined tissue from prostrate biopsy in high percentages of tumor (95%, 95%, 85%, 70% , and 60%). 'Innumerable' mets! PSA approaching 4000! Was told I wouldn't last 3 months without treatment. Fortunately for me I had an excellent MO who put me on Zytiga & Prednisone one month after DX. I was already on Lupron and, for one month, Casodex. I stayed on Lupron in combo with Zytiga/prednisone.

Turns out that I feel like I'm a poster child for these meds. Testosterone and PSA rapidly shot down to near zero. Living a normal life for a 78 year old man. A few hot flushes now and then, but nothing to worry about. I'm a devout Christian and can easily accept my life as it stands now. I wish that more people could see God's design in the universe and look forward to life after death---an eternal life with God! Mean while, live each day as it comes.

"Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof." [Matthew 6:24]

Muffin2019 profile image
Muffin2019 in reply to

Great attitude, keep it going.

j-o-h-n profile image
j-o-h-n

For me.... I'll live forever..... Cause my doctor told me I would die when I get a hard-on.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/26/2019 7:02 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

y aha ya aya ya h you wish !!!

Bjry profile image
Bjry

Provided you can understand it - more details on urotoday.com . I think the study was originally from PubMed.

"External Validation of the Prostate Cancer-Specific Comorbidity Index (PCCI), a Claims-Based Tool for Prediction of Life Expectancy in Men with Prostate Cancer.

April 26, 2019

Accurate assessment of life expectancy (LE) is critical to treatment decision making for men with prostate cancer. We sought to externally validate the Prostate Cancer Comorbidity Index (PCCI) for prediction of long-term mortality in men with prostate cancer and operationalize it using claims data. "

SeosamhM profile image
SeosamhM

Wow - great post with some great answers that span the globe and the spectrum of belief. So I will weigh in, TN62 - we are not a statistic until (as someone wrote) we experience the "non-survival event." Then we go into the books. As an engineer and scientist, I firmly believe that these median stats will be higher for the (unfortunate) future generation of APCers based on our experience - will it push to 6, 7, 8 years? Higher? We are making that a reality. In the meantime, you are in charge of your own journey...educate yourself and follow your instincts based on this knowledge. May we all end up on the high side of the Gaussian distribution!! ..... Cheers - Joe M.

Garbonzeaux profile image
Garbonzeaux

When first diagnosed and knowing little, I asked my MedOnc at MD Anderson the prognosis question, looking for averages. She said "Only God knows" and refused to give me any info of that kind at all. I later asked another well-known oncologist what I could expect. What I really meant was symptoms, timing of progression, etc., but he answered "If you're still with us in 7 yrs, we've hit a home run."

Well, I intend to be around way longer than 7 years, but it's true, only God knows. I'm planning to hit a few grand slams, and I figure attitude is huge.

Sxrxrnr1 profile image
Sxrxrnr1

Sxrxrnr1in reply to whatsinaname

22 minutes ago

What I suggest is that any question asked of your physician of how long have I to live with my advanced PCa depends on many variables beyond a diagnosed of advanced PCa.

Examples:

1. Co-morbidities. Do I have diabetes, a bad heart, Aids, kidney disease or any of a multitude of potentially fatal health disorders that are possibly going to kill me before my advanced PCa will.

Overall survival means when will I die,,,,not just a PCa specific death but from any cause, including getting run over by the proverbial bus.

2. Have I become completely castrate resistant, not only from standard first generation Lupron’s, Casodex, Flulitimide, etc, anti anti-androgens, agonists etc, but additionally 2nd generation Zytiga’s Xtandi’s etc.

If not castrate resistant to all of these, you could live for many, many years. If castrate resistant your chance of an extended life expectancy is quite problematic unless some of the targeted immune therapy drugs(Keytruda, Opdivo, etc) or LU xxx infusions such as Lu 177 begin to bear fruit,,,,which hopefully they will in order to wean men from the devastation of hormone therapies.

Non castrate resistant you could survive indefinitely until a co-morbidity introduces you to your maker. Castrate resistant, you are damn luck to make 5 years or even 3 in many cases.

Without a full disclosure and understanding of these variables, my point is that a generic question of how long might I live,,,,statistics are meaningless.

Additionally into this mix I have long strongly suspected that the aggressive therapies prescribed to save our woebegotten butts from the ravages and deaths from this disease,,,in fact take far too many of us to an early grave. There is little argument what it does to the QOL for the statistically benefits they provide in overall survival.

I have long been astounded at one often published statistic now that we are into the subject.

One man in 6 or 7 is diagnosed in the USA with PCa. I’ll buy that.

Then it is suggested that only 1 in 6 or less will ever die from it. Do you believe this us true?

My point goes as follows.

PCa in general is a disease of older men hitting a peak number diagnosed after age of 65.

What else happens at 65,,,it is the start of a vast myriad of possible fatal diseases.

So one is diagnosed with PCa at 65, has his RT or RP, has 5 years of throughly comprised QOL in a majority of those treated aggressively, but is deemed cured. At 72, has a stroke, heart attack, diabetes has caught him, run over by the bus.....,,,,guess what,,,,,his death goes into the winner’s circle as a cured of PCa victor.

Statistically if he had undergone no treatment at all, 10 year survival is very close to 100 percent,,5 years so close to 100 percent the difference is almost background noise. And with little impact on QOL.

One other small point. Everyone knows of those who have had RP, RT, years of ADT, etc. and are alive and kicking 15 years later. Going back to where I mentioned that only some 15 percent of men diagnosed ever will die a PCa specific death. That suggests that 85 percent will not,,,,,those numbers plus or minus in a fairly tight circle are regardless if the men were treated very aggressively or had no treatment at all.

Only 2 long term studies have been done on this topic. Confirmation by these 2 studies is quite enlightening.

Sorry you asked what time it is, I went off into how to build a watch.

Please excuse typos

Every human who lives is in the same boat. I don't see a difference between me and someone who will die from something else. Yes, my life will probably be shorter than the average, but that doesn't mean it can't be better.

whatsinaname profile image
whatsinaname in reply to

Absolutely, gregg57.

I think the same, more or less :-)

JimVanHorn profile image
JimVanHorn

I had PCa for 11 years and now it is gone, but I am still alive! They gave me 5 years in 2007. I was depressed and got my affairs together, but I didn't die. I wish you well.

Widow314 profile image
Widow314

I am not sure if a woman’s POV is welcomed here, but I found this forum link on Reddit-the prostate cancer sub. If I may, I would just like to share my husband’s story.

He was 55-excellent health, very active, over abundance of energy; also, never smoked or drank and at 5’7, never weighed more than155 lbs. He worked two jobs by choice and kept a large and immaculate garden and yard. After shoveling snow one day in the winter of 2017-a pain in his hip took him by surprise. Then a freak sinus infection turned into cellulitis in his entire face resulting in seven days IV antibiotic infusion.

At this point he decided to tell the doc he had not had a physical nor seen a doctor, for any reason, for 16 years. Never a sick day did he have. He had his first physical exam since age 39 at that point.

We were completely floored when the blood work found a PSA of 27, biopsy found Gleason 9-stage IV metastatic into the pelvic bones and bladder. This was April 2017. We were referred to an excellent cancer center and world-class doctors.

He had lupron, radiation and chemo. Was stable for many months-PSA of less than zero, was still active, maintained two jobs and a yard. November of 2018 a single incidence of tremendous pain and scans found advances into the spine and brain. Treatments were aggressive with whole- brain radiation then more chemo-always the lupron. Found more advances in February-started Keytruda. His decline came fast and furious after the first of March and he died March 14.

For what it is worth here-he and I were determined, 100%, to outlive the odds. We were united in constant positivity and looking forward to being part of that percentage of long-term survivors. It was not to be. He died just shy of 58 breaking my heart and whole world at 49.

He had always taken care of me through 27 years of marriage. I knew very little about our finances, car maintenance, yard work or home repair. He was cognitively able to teach me for about one month before the cancer of the brain took its toll. We just assumed we would have all the time in the world to figure all that out. He felt and he told me that if he let go of all of his responsibilities, it was somehow letting the cancer win.

To feel and think positively is the only way to live your life after your world is enveloped with cancer. But please do share your responsibilities, educate your wife and kids in all things that they may be responsible for should you not be able and/or are gone from their world. (And a PSA is not always the indicator of disease progression. His last PSA was still less than zero).

Beets7 profile image
Beets7 in reply to Widow314

So important to remember that tomorrow is guaranteed to no one, cancer or not. Sharing responsibilities and info with spouses and families is crucial.

ctarleton profile image
ctarleton in reply to Widow314

Thanks so much for sharing your story, Widow314. Any man facing serious illness and decreasing capabilities too often has a hard time of grieving for his loss of abilities and his former roles in life. He has to relearn how to ask for help with things, and how to know his evolving limitations. There are sadness, humility, and courage in the mix. For many men it is a reversal of much of what was instilled in us as we grew from boys into independent, capable men. The love and support of a spouse/caregiver surely helps a lot.

In our case, we did some Estate Planning and other documents updates in the first year after diagnosis. The practical transition and learning of other weekly, monthly, seasonal, annual things and activities from "me" to "us" to "her" has been done a little at a time. Luckily, I've survived for several years. I also found the use of a "Planner" type of book helpful for collecting information in one place. Here's just one example among many available for that purpose:

(Click on the Table of Contents tab.)

store.nolo.com/products/get...

I must admit, though, .... it is challenging to "let go" of much of the stuff related to things like automobile stuff, yardwork, and the responsibilities for various accounts & bill paying, etc. For some of these losses it was because my treatments & side effects reduced my capabilities and affected the life roles I formerly did with ease. For others, it just made sense to do the communication and transitioning sooner, rather than later. On the other hand, it has brought us both some more peace of mind. Fewer distractions from the really important parts of living/loving in our lives together for as long as we have together.

Charles

Widow314 profile image
Widow314 in reply to ctarleton

Thank you so very much for your thoughtful reply. I hope you are doing well. I appreciate your advise and thoughts. I finally did get a planner/organizer and it helped tremendously.

Paul-18 profile image
Paul-18 in reply to Widow314

Wow.. thank you for your post.. we (I) need to hear that. Sobering but needed.

whatsinaname profile image
whatsinaname in reply to Widow314

Fantastic post, Widow314, one of the BEST that I have read thus far on this board.

I hope that you are managing things well after his passing ??

All the very best to you.

Widow314 profile image
Widow314 in reply to whatsinaname

Thank you for your reply to my post. It was written when so much came at me all at once. I have been so blessed with wonderful neighbors and family who help me so much. Some days I am so melancholy. There have been one or two days, just recently, when I felt almost normal. It was when I was caring for the roses he loved so much and I was feeling like he would be happy with my efforts. So I live for more of those moments

whatsinaname profile image
whatsinaname in reply to Widow314

I can only hope that time will heal. Please continue to tend to the roses that he liked so much. Anything that gives you happiness is good. I feel for you.

All the very best, Widow314. You deserve to enjoy life even now after your dear husband's passing. Please try and enjoy life as much as you can. I am sure your late husband would be happy if you were happy.

Kevinski65 profile image
Kevinski65

I'm 7 years out. Basically it's has been Lupron and Xtandi. Stage 4, M1, 31psa at diagnosis. Did a ⛵ full of supplements during the Lupron only phase. NIH added Xtandi 4 years ago. I stopped eating meat, always free range chicken , fish, things along those lines. I take spices off the spice rack and stuff gel caps...wash down with gaviscon. I take an empty spice bottle and fill equal parts; curry, allspice, oregano, ceyenne pepper, etc. Drink Pom, green tea, pray. So far NIH does tests up the kazoo, PET, cat, bone scan. My cancer is asleep for now... I'm 66, dx at 59, don't smoke or drink, 7 years out , PSA .02. After first visit NIH flys me back and forth now for 4.5 years, every 6 weeks. I was told initially I'd go 3 to 5...years. In my opinion everything helps. Genetics is a big factor too. Good luck.

Muffin2019 profile image
Muffin2019 in reply to Kevinski65

Genetics do help, my mom and grandmother lived to 95 but my sister passed from lung cancer (never smoked, ate healthy) thus year. My brother is 80 and is in second but with cancer, treatable but not curable so he joins me in being a cancer survivor .

GeorgeGlass profile image
GeorgeGlass in reply to Kevinski65

Kevin, How are you doing these days? NIH pays for your flights?

Kevinski65 profile image
Kevinski65 in reply to GeorgeGlass

If you are signed up for a clinical trial, you have to pay for your first trip. You then, if accepted into the trial , get transportation paid for and trial drugs paid for, also partial reimbursement on food and lodging.

GeorgeGlass profile image
GeorgeGlass in reply to Kevinski65

Great, I think NIH blacklisted me for complaining about the poor treatments at received at Walter Reed. Which trial did you participate in? How are you doing with your cancer battle these days?george

Kevinski65 profile image
Kevinski65 in reply to GeorgeGlass

I doubt NIH would do that to you. I've been unusually sensitive to Xtandi (and Lupron). I was diagnosed in 2012, so 10 years roughly, with a Gleason 9, and PSA at 31 at diagnosis, I've been .02 for 8 years on these 2 drugs.

GeorgeGlass profile image
GeorgeGlass in reply to Kevinski65

Well, i think that because they scanned me with pmsa/pet and called me to join a biopsy program of the cancer spotted on psma pet. When i asked a few questions, they got transferred to the actual doctor, who responded by saying that my doctors at Duke could do that, which of course wasn’t going to be ordered by my Duke oncologist because they are never as proactive as nih programs.

That’s fantastic news that the combo is working for you.

Why did they choose xtandi for you vs zytiga? Was it based on biopsies?

Why do you make the combo pills instead of just sprinkling those things on your food? What does the gaviscon do, cost the stomach lining? What kind of adt did/are you using? I was on lupron but now on orgovyx.

Kevinski65 profile image
Kevinski65 in reply to GeorgeGlass

I took mainly Zyflamend whole body as a supplement. Sometimes that gave me heartburn. I started out only on Lupron then my local oncologist added casodex for flare. ( Just for two weeks). After 2.5 years my psa went up so I applied to a clinical trial; Xtandi alone or Xtandi and prostate , (a fowl pox vaccine). I got in the 'Xtandi alone' arm of the trial. ( I still had to take Lupron). Since then I've been at .02. NIH, also ran blood tests, bone scans and CAT scans every months. I had 3 bone spots that disappeared. So far , do good and I recommend clinical trials to those who have time for them or retired.

Kevinski65 profile image
Kevinski65 in reply to Kevinski65

I meant prostvac , a fowl pox vaccine.

GeorgeGlass profile image
GeorgeGlass in reply to Kevinski65

That’s awesome. How have the side effects been on you? Tiredness, blood changes? Heart issues?

Kevinski65 profile image
Kevinski65 in reply to GeorgeGlass

I have multinodular hyperthyroidism so I have to take atenolol and tapazole. It causes hypertension I also take antidepressants and Klonopin at nite to sleep. It might seem like alot but my blood parameters are normal.

GeorgeGlass profile image
GeorgeGlass in reply to Kevinski65

That’s tough but you are doing a great job fighting everything. Did xtandi cause the hyperthyrodism? What was your thyroid level from testing, before you started taking the thyroid meds?

Kevinski65 profile image
Kevinski65 in reply to GeorgeGlass

I had the diagnosis of multi-noduler hyperthyroidism before I was diagnosed with stage 4, M1 , prostate cancer. Unfortunately, hyperthyroidism causes panic attacks, general anxiety, depression as though you had a mental illness. Psychiatrists never test you for it, and they should, before putting you on psychotropic medications. Ironically, desimpramine, prozac, and Zoloft slow down prostate cancer. Aspirin does this too, so does tagamet. I took a lot of these, now I take Celebrex and Zometa. These things shouldn't be substituted for real therapy but along side it, I believe it helps.

Bebby1 profile image
Bebby1

Prove him dead wrong

People here will help you

They have time

Empathy

Research from far and beyond

And...

They really get it

Read on

And see the years they have savoured

Everyday we are all closer to a use by date

Day by day

Focus on good results

Ways to modify side effects

Read the humour on this site ( some of it cracks me up)

I wish you the very best on this crap road trip 👍

GeorgeGlass profile image
GeorgeGlass in reply to Bebby1

I was going to reply to this. I noticed that your husband died. I am very sorry for your loss, and I hope you are finding some daily happiness even though you won’t fill the void completely. Time will fill the pain of your loss though. God bless you. Stay busy with social activities with friends. ✝️🙏😔

auroracham profile image
auroracham

I am at two years. Did zytiga, followed by a trial at MD Anderson. Beginning a new trial in 36 hours. PSA always was fairly low but has jumped to 180 two weeks ago from 36 in May. I hope for best for both of us. My MO says I have under two more years to live. Stage 4, Gleason 4+4

TomNew62 profile image
TomNew62 in reply to auroracham

I’m reading: How To Starve Cancer and taking lots of supplements.

Paul-18 profile image
Paul-18

I have been on Lupron since October 2018 and had 6 rounds of chemo. Now on lupron & Xtandi. 4th week on Xtandi and the rash and/or hives are bad.

Paul-18 profile image
Paul-18

I agree with many here, but you really do not hear about the people on the other side of graph. I was diagnosed in October 2018 and was told with 6 rounds of chemo and on Lupron my PSA should stay down on average 22 months, mine doubled in 3 months.

whatsinaname profile image
whatsinaname in reply to Paul-18

Sorry to hear about your situation, Paul-18.

Yes, I agree, we do not hear about the people on the other side of the graph :-)

GeorgeGlass profile image
GeorgeGlass in reply to Paul-18

How are you doing these days Paul?

Dostoevsky profile image
Dostoevsky

Same meds plus prednisone for 2 years ... exercise; yoga postures and meditation, sunshine and walking helpful & Powernaps Too!

Lt036 profile image
Lt036

Hello TomNew62 This is Lt036. Am 75 and been fighting this stuff for 20 years. Been taking one drug after another. One stops working they put me on something else. Been on Lupron for several years and it stopped working. Now I am on Lupron and Xtandi. Lupron made me tired and had hot flashes which I can tolerate but Xtandi along with Lupron is giving me fits. Feel terrible half the time and no longer have any balance. Sure has messed up my golf game. Are you having any of these problems? The cancer has gotten more aggressive so Doc won’t decrease the doseage

Of Xtandi. Would love to hear from you if you are having any of these same problems with Xtandi. Thanks and good luck

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