Psa up to 40 prostrate cancer has me... - Advanced Prostate...

Advanced Prostate Cancer

22,278 members27,978 posts

Psa up to 40 prostrate cancer has metastasize in bones been on Lupron for almost a year.

Paulo14 profile image
45 Replies

Doctors have said I have a proximately five years? How firm is this statement .

Written by
Paulo14 profile image
Paulo14
To view profiles and participate in discussions please or .
Read more about...
45 Replies
NPfisherman profile image
NPfisherman

Welcome Paulo....

No one knows exactly how long you have ....so ...

Please tell us about your prostate cancer.....gleason score, metastasis....lymph node or bone...what treatments that you have has.....radiation? surgery?? etc and we will do our best to help....

Don Pescado

pjoshea13 profile image
pjoshea13

We mostly hate to hear of doctors predicting mortality for others, but, of course, want to have some idea of what we have left.

The mortality stats form a bell curve & many in your situation will do better than that 5 years. My feeling is that a lot of what I have posted in the past may offer clues on how to achieve that.

A simply example is how subclinical inflammation (rather than PCa markers) may predict where on the bell curve someone will fall. Inflammation can be treated.

healthunlocked.com/advanced...

healthunlocked.com/advanced...

healthunlocked.com/advanced....

healthunlocked.com/advanced...

But there are many other areas of interest that may affect how long you have. Shrug off that 5 year prediction - you can do better. Go back into the archives.

Best, -Patrick

Schwah profile image
Schwah in reply topjoshea13

I read your posts. Very interesting. My CRP is at .07 (pretty good I guess) but my Albumin is only 3.5. How does one raise there Albumin?

Thx

Schwah

pjoshea13 profile image
pjoshea13 in reply toSchwah

Schwah,

My albumin was <4.0 at diagnosis - before I started to use a lot of polyphenols to reduce inflamation. It has been 4.5 or higher for a number of years. &, for me, it has become an important survival marker.

Since your CRP is good, are you eating enough protein? A low-protein diet will affect albumin. No need to go to a high-protein diet - albumin levels slowly recover (retest after a month). Get some protein with every meal.

Kidney function can affect levels, if you are losing albumin in the urine. Consider the microalbuminuria urine test.

Impaired liver function, I suppose, since alcohol intake is a possibility. Albumin is produced in the liver. My alcohol intake is quite high & I have good levels, but that proves nothing.

There are more obscure possibilities.

Best, -Patrick

in reply topjoshea13

👏🏼

Fairwind profile image
Fairwind

Today, with all the new drugs and treatments coming online, mortality is impossible to predict.. Have you tried adding Zytiga or Xtandi to your ADT? They can be very effective. Also, look into Provenge and Radium 223. The harder you fight, the longer you live...

Magnus1964 profile image
Magnus1964

Give a history of treatments and diagnosis i.e. Gleason etc. This tells more about where you stand.

Tall_Allen profile image
Tall_Allen

While it's true that half of men used to survive for 5 years after distant metastases were detected on a bone scan/CT, this estimate is based on data from 20 years ago, and there are other factors that enter into that estimate (time to metastasis, previous treatments, pain, performance status, comorbidities, ALP, hemoglobin, etc.). In the last 20 years, there has been a lot of progress made in life-extending medicines.

Todd Seals is still going strong 12 years after his initial diagnosis with metastases:

menshealth.com/health/a2530...

BarronS profile image
BarronS

Like TA said, it's going to be relative to your current situation and your overall health. If you have any type of gene mutations. Sounds like you were just on lupron and no other drugs. A recent study just came out for men with hormone sensitive prostate cancer and 78 percent of men made it to 3 years that started with a low burden of disease.

It's also going to depend how you do on each subsequent therapy and how they are sequenced. Just by going with what you said, it sounds like you still have provenge, docetaxel, xtandi, zytiga, jevtana, and possibly lu177. Then whatever treatments may be coming down the pipe. Everything I've seen coming out seems that the median time is now 3-5 years.

I understand the need for a date, but i found that it just causes more anxiety. It truly is better just to take it as it comes. Lets say a doctor says "you have another 4 years to live". Well now 3 years later you're thinking "i only have another year left to live", "i only have another 2 months to live". It does absolutely nothing but causes anxiety.

I think I saw a post on here that said something like "LIVE everyday, but just make sure that you have all your affairs in order". I think that's the best advice.

in reply toBarronS

Great advice! Don’t fall into the stats.

CantChoose profile image
CantChoose

It's funny how your perceptions can change. My husband was diagnosed 2 months ago with a high volume of mets. 5 years isn't sounding too bad at this point. Our doctor has told us roughly 2 to 4, but that she's not a fortune teller and it's dependent on response to treatment.

Some cancers respond. Some don't. Hope you're in Group 1.

softwaremom00 profile image
softwaremom00

I agree with Patrick. You can do better. It seems like better treatments come along all the time. Try to eat healthy, relax, love a lot, and enjoy life. I think you can do a lot better than the 5 years.. Lets hope for at least 20!

Sending hugs, prayers and love!

Softwaremom

snoraste profile image
snoraste

statistics are outdated and backward looking. Focus on your treatment, your diet, and your physical and mental health - and keep growing old. You will be more at peace with it as your journey progresses.

Shooter1 profile image
Shooter1

They told me 12-18 mo. when they found a mess in my guts after clear scans before surgery. Well all treatments worked and 26 mo. later in remission and seeing doc every six months. Their first est. before treatments are bunk., if your treatments work..your have much longer, but at a new normal.

2dee profile image
2dee

Professional predictions are just reasonable educated number opinions. Attend local advanced PCa support group for reinforcement and current experience and recommendations.

In my group we have people who were told Stage 4 over 14years ago.

It's only over when you call it quits. Hopefully much much much longer.

2Dee

larry_dammit profile image
larry_dammit

Keep talking to these guys. Doctor is guessing these guys are living with the monster. Some for over 10 years. Fight that monster 🙏🙏

abmicro profile image
abmicro

Kaiser offered me hospice 12 years ago as standard of care if I got worse. No lie. That is an extreme example of an oncologist who was at the height if his incompetency and had no knowledge of treatments beyond Lupron. Since then, I dont believe any of them, and I cross check every big statement or diagnosis with 2 or 3 other doctors and also cross check with this forum, which has more knowledge and experience than most doctors.

Kaliber profile image
Kaliber in reply toabmicro

I’m with Kaiser as well. 7 months ago , my psa was 1400 - 1600 , my bloodwork looked very grim , my physical condition was tanked with pain and my scans showed a widespread heavy met burden. My first visit with my onc doc ( they got me in on an emergency basis, where there was a waiting list ) I asked him how long I had and he said “ everyone is different “ , but he brought in my wife and the hospice nurse . Told me to get my affairs in order and for my wife and myself to work closely with the hospice group. Today , After 7 months on lupron - xtandi - zometa, my psa is <0.1 and ALL my blood work is back in the green range again. Yes I realize I’ve been really lucky so far, but as you said, it go’s to show you that even in the worse of PCa circumstances good things can happen and you can live longer than people expect. I was sure I was toast 7 months ago and now with all the additional treatments available, my prospects are much better. I could live for several years or more.

Paulo14 Don’t agonize over that 5 year death sentence, there are quite a few proven effective additional treatments that can bring you along for many years. The large numbers of long term survivors on this site are proof positive. Hang in there you got this.

I went to my doctor and he gave me 6 weeks to live .... I said “ doctor if I only have 6 weeks I can’t pay my bill “ , the doctor thought about it a bit and gave me 6 more weeks to live.

in reply toKaliber

Hahaha.. when he starts asking you to prepay then it’s trouble .. luck is a factor . Glad it went in your favor . In the green again . They speculate .. you don’t have an expiration date . Everyone of us is unique .. peace

jfoesq profile image
jfoesq

As other have said, more information is needed to help us respond to your query- i.e. Gleason score, location of PC before treatment began.... I am unclear form your question whether the PSA and bone mets indicated by you occurred before or after treatment began. If after, then what was your PSA and bone mets like when treatment began. It would also be helpful to know your age, overall health other than PC (i.e. any diabetes, heart ailments.....) and also know what your lifestyle is. Do you exercise and eat a healthy diet. Lastly- IFFFF you are not responding well to Luporn, there are other treatments you may be able to try.

Stegosaurus37 profile image
Stegosaurus37

We all have "five years"; we just don't know from when we will have that five years.

whatsinaname profile image
whatsinaname in reply toStegosaurus37

I was given 3 years from diagnosis provided I took "treatment". Otherwise under a year.

I have been taking all sorts of treatments and am only 15 months on. I doubt I will progress to 36 months, quite honestly. Unless a minor miracle occurs and something starts working.

Cheers Everyone !!!

Sxrxrnr1 profile image
Sxrxrnr1

Then of course depending on your age and co-morbidities, one may have or should have less concerns of one’s PCa, and more from those competing factors leading to one’s early demise. For the overwhelming majority of us from original diagnosis, these by far are what will have you pushing early daisies.

Less than 15 percent of men diagnosed with PCa ever expire from PCa specific disease. Of course this statistic includes those from the mildest disease at diagnosis to the most severe.

Treatment regimens too undergone, will have some unpredictable effect.

6357axbz profile image
6357axbz in reply toSxrxrnr1

Yes but this is an advanced prostate cancer blog. Only 3%of men have an original diagnosis of stage 4 mPCa. I don’t know what your 15% statistic means. You say 15% of PCa patients but that includes a whole lot of PCa patients diagnosed with curable PCa. My impression is this blog is for those of us diagnosed with incurable, stage 4, metastatic PCa.

in reply to6357axbz

Correct! Stage #4 any cancer is a different ball of wax . I’m a 3% er . But I’m not a stat ....

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

Paulo.... you must tell us more about yourself so we can predict how long you have, See we have a special computer where we input all of that data together with your birth date,

the date you first got laid, where you went to school, you first teacher's name, the current year make and model of the car you drive, what is your favorite food, do your text or do you not, what size shoe you wear, what's your favorite color, do you know how to swim, and finally how tall are you. We then depress the start button on the computer and we go to lunch. After lunch the computer will tell us the information you want. If you want to know this information then you must contribute to Malecare.

75 years ago today those brave men saved our freedom, now don't let it dwindle away from us.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/06/2019 5:24 PM DST

in reply toj-o-h-n

😂

in reply toj-o-h-n

How about the date that you last got laid?

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

His first and last date was the same....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/07/2019 12:38 PM DST

j-o-h-n profile image
j-o-h-n in reply toj-o-h-n

oops, mine too.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/07/2019 12:47 PM DST

in reply toj-o-h-n

Me too!

Captsquid2u profile image
Captsquid2u

Before I started treatment, my primary was more concerned with a clinical trial for Repatha to loser my cholesterol while meanwhile my psa was 6 and that was two or three years ago, had biopsy Gleason 9 with two bad cores and prostate loaded with perineutal I believe pre cancerous cells. Dr. Wanted to do robotic surgery and remove my prostate, I refused I knew fro doing my homework that the corse core was on the bottom of my prostate, so there was bound to be cancer cells under where they removed my prostate. From what I had read. The oncologist I was going to gave me one year if I did not start treatment immediately and then possibly three years to live after treatment, I metatasis to the bones ,partiel lymp node. I’m on Lupron, Zytiga, prednisone, and xygeva. My highest poa was 348 it is as of a month ago 3. Feel tired, no energy, oncologist prescribed Vicodin 10 mg 300 acetaminophen. This helps tremendously with the pain and My mobility and alitt le endorphin activated and well received, I get vertigo, and depressed but push myself to be active, just started the xygeva had to have some dental work done before and my brothers a dentist so I got put on the back burner for two months! I don’t feel as good as I did a year ago but I still don’t feel like I’m going to die, but who knows ,I live Day by day, and do not have all my things in order, though have a will etc. prioritize what makes you happy and don’t spend all your time worrying. I modified my diet, vegan for a year and then vegetarian, still do not eat red meat, and no too many animals just alittle chicken, or fish now and then, I love to cook so this was a major challenge, but after awhile your tastebuds adapt, sort of! Good luck my friend, and keep positive.

in reply toCaptsquid2u

Very honest ..

monte1111 profile image
monte1111

Just had partial re-roof to install solar, having water heater installed Monday. Kaiser expiration was 2 and a half years if I did chemo. If they are right, some one else is going to have cheap electricity and hot water in 3 months. Why get up in the morning, if they are going to launch the nuclear missiles? Then everyone will have cancer. We will fit in quite nicely. Enjoy.

in reply tomonte1111

Monte! 3 months to cheap electricity, something to hang in for hahaha.😂

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Plain ole hole in the roof is perfect solar. Who needs hot water for one annual bath? Don't be such a pessimist you ain't going nowhere until you finish paying for the solar/heater installations. Launch missiles? Heck we Lunch on our med missiles every day....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/07/2019 12:45 PM DST

in reply toj-o-h-n

He ain’t going nowhere ..

in reply tomonte1111

Hahaha , I am laughing with you ,dear Sir . Take care monte .

Muffin2019 profile image
Muffin2019

I am stage 4 with 6 spots that mastisized to the spine and rib chemo and lupron, changed my diet to limited red meat, mostly chicken,turkey and fish. I am still working part time, 10 to 20 hours a week, walk 3000 steps per day to build bone mass. The new chart is more positive, over 10 year had a survival rate of 85 percent so no way I am throwing in the towel. I plan on working 75 (will be 68 this year) and make my 25 years with the company. After that my next goal is to make it to 85 and maybe 90. They are coming up with new stuff every year so hang in there, watch your diet and get moving.

in reply toMuffin2019

With your great habits you can make it !

6357axbz profile image
6357axbz in reply toMuffin2019

What new chart?

Muffin2019 profile image
Muffin2019 in reply to6357axbz

It was in an Oncology report I read a year ago based on the new treatments.

in reply toMuffin2019

They told me 36 months . That would have been ..six months ago ..who hoo ..riding the gravy train . Make the most of each day .

67 cents , That’s a great story .

Firm as jello! Make that ten years ..save yourself .

Not what you're looking for?

You may also like...

My PSA has been .02 for the last year but my testosterone is climbing. Why?

My testosterone was less than 10 a year ago but it has steadily climbed up to 35. I have been on...
Fitzbruce1 profile image

Dad is on Lupron for the past 18 months his PSA went up I'm worried

My dad was diagnosed with PC Jan 2015 he has been on Lupron and xgeva and his PSA was low went for...
Olivia007 profile image

On Lupron and chemo and PSA went from .28 to .48 in two weeks

My husband started ADT in January with Firmagon, two months in a row. His PSA dropped from 9.79 to...
Wyldhare22 profile image

PSA went from 1340 to 2.4 in 2 months on Lupron and Casodex 50 mg

Hi my name is Jim.I was diagnosed with prostate cancer and some lymph involvement In September...
bluephi profile image

Has anyone experienced a significant decrease in PSA on Zytiga and then an increase

My father has been on Zytiga for 6 weeks. He has been feeling great and active. His initial PSA was...