Father has metastatic prostate cancer... - Advanced Prostate...

Advanced Prostate Cancer

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Father has metastatic prostate cancer. Last psa was <0.2. Similar stories and survival?

BarronS profile image

My father was diagnosed last year with prostate cancer. Has a gleason score of 7. They did a RP and afterwards he went for a bone scan. They found 4 lesions total in his body. 2 on the ribs and 2 on his spine. He was then put on Lupron, zytiga, and prednisone. He's been on them 3 months as of last week and his last PSA reading was 0.2 down from an 11.

He still moves around almost all day but becomes tired after a few days of work. He has some intermittent back pain but is doing well overall as his CBC results came back improved. He now only has mild anemia.

I was just wondering if anyone has a similar situation as this or knew someone in a similar situation and how long did they survive? I know that's a tough question because everyone is different, but i would just like some information.

Thanks

28 Replies

I'm not an expert but it is my understanding is that the length of time one gets on ADT is inversely proportional to the PSA response. The lower the PSA, the longer the response lasts and the longer the patient has control over the cancer. Your father's 0.2 is a pretty decent response and should put him in the category of men who are doing well. As for how long he lives, that depends on his response to the drugs he's taking and his response to follow on drugs that will be prescribed if and when the current drugs fail to control the cancer. A number of new drugs have arrived in just the last few years. Zytiga is one of them but there are others too, and there is a very good chance that more new drugs will be available in the next few years. There are no guarantees and no easy ways to predict lifespan but, based on what I'm seeing on this forum, I think five or ten years is very possible and even more is possible.

Your father's tiredness is a common side effect with ADT. It can usually be countered by a program of regular exercise and 8-9 hours per night of sleep. Vigorous exercise is great, but even walking can make a big difference. Some men have said they go out and walk 3 miles or so every morning and it's made a huge difference in the amount of energy they had. When I was on ADT I jogged about a mile a day on a treadmill. It was harder for me than the four miles I had jogged (at a faster rate) before ADT, but it gave me enough energy to handle my office job without problems and to go hiking in the woods on six mile hikes.

Best of luck.

Alan

BarronS profile image
BarronS in reply to AlanMeyer

Thank you for the reply.

He has had a good response from Zytiga and may get to undetectable...be patient for now...wait till next month....some people have added indomethacin to squeeze a little extra out of zytiga and get down further or prolong the effects/block resistance--depends on his kidney function being OK and this med must be taken with food--

ncbi.nlm.nih.gov/pubmed/277...

For me, I walk/jog-- 3 miles a day and lift weights...start Dad slow---try to walk a mile and light weights are fine for Dad--helps maintain bone strength....as far as the bone mets with his PSA low, you can look at a stereotactic radiation trial for oligometastatic disease (<5 lesions) at the sight below---page 4:

cancer.gov/about-cancer/tre...

I had one lesion and had it treated with stereotactic radiation at UPMC--follow up next month. There are 3 locations-----in Pittsburgh, there is one location at UPMC--Dr Burton and one at UPCI--Dr Heron. Here is some initial data from Dr Heron--see below:

sciencedaily.com/releases/2...

Some here do not endorse stereotactic radiation because it has not completed phase 2 trials for prostate cancer--in phase 2 currently--I looked at my options and chose...good luck...

Wishing you and Dad all the best....

Fish

BarronS profile image
BarronS in reply to NPfisherman

Thank you for the information.

How old is dad, and what is his overall physical condition----any other diseases going on?

Nalakrats

BarronS profile image
BarronS in reply to Nalakrats

He is 68 years old and he is in decent condition. All other organs are functional and the only thing he has right now is mild anemia. He was diagnosed with M1 around 3 months ago and immediately put him on zytiga, prednisone, and lupron.

I just want to know the average that someone might have to live at that stage. I've seen as short as 2 years to as long as 5.

Nalakrats profile image
Nalakrats in reply to BarronS

Three are no averages. And your dad is young. Some of us me included did not get diagnosed until my 70's. There is no reason for him to not live to his Genetic Average, even with Pca today.

My first DX encounter with my Doctor, went like this----> there is no use to having surgery or Radiation---> that my best Option, would be to do nothing, live out what could be a good 12 months, as best I could and then when ready head over to Hospice.

I did a 4 day Study on my rare pathology which got into Research Papers from South Korea, Japan and China where Asian men had a higher % of the type of Pathology I had/have--as there were few articles written in the States, basically acknowledging that my pathology existed, and there was no known treatment modality, as it was not studied, as it was rare. The Asian Papers indicated an average OS of about 18 months from DX. Contact with the Drug Companies/Universities, offered no idea how to treat.

Well I will not go into my history of my Medical, and Alternative Medical Attack on my Pca. But I am coming up on month 39, and have had an undetectable PSA, and clean scans for about 34 of those last 39 months. I am on a drug vacation, in Florida, for the winter, and Fishing about every day and enjoying life at 75 years old.

Why were the Doctors, and the research papers wrong? They gave averages! They also did not take into account Individuals differences, or that certain treatment modalities were going to be employed that were not traditional.

I never even considered Chemo, or Radio-therapy. So I tell you this, so you get OS out of your mind, and do not start investing in a burial plot---> your dad has many years of productive life ahead, of himself, especially with all the new Medical Treatments, Drugs, of many categories, and last I looked, over 2900 new drugs, 290 in trial around the world, and the rest coming out of Laboratories, In Vitro and In vivo studies that show promise. I can no longer keep up, with it all.

And we need this site as between all the men that are following different research models, we kind of find about 2-3 posted every day.

Just make sure you have an MO dedicated to Pca, at a Center of Excellence. Why--because all cancer is being heavily attacked with research, and a Generalist cannot keep up with all the papers on new cancer drugs, in trial or test. I had one Generalist at my local hospital, tell me that 50% of his waking life per week is spent on reading Papers. So who is taking care of the patients?

Anyway, I got verbose---and IMO Only, current and new technology combined with Prayer, will help generate a long life for your father. So try to relax.

Nalakrats

Break60 profile image
Break60 in reply to BarronS

All of us with this crummy disease are looking for the answer to your question as is anyone with a potential life shortening disease. I was 69 at dx and happy that I had already lived a pretty long life and experienced virtually everything I ever wanted to do and more than I could have ever imagined.

Regardless of your age or situation, getting this disease and having a poor prognosis (high risk, which only about 10% of us are unfortunate enough to be ) requires us to change our priorities quickly. We need to plan for the shortest remaining life span but treat our disease aggressively so as to hopefully achieve the longest life span. We need to get our affairs in order but live every day to the fullest however we define it.

I was given three years to live five years ago. I’m still going strong after many treatments. I’ve found that vigorous exercise is the most helpful thing you can do for health and well being beyond medical treatments.

So ignore the statistics and don’t rely on the experience of others because we’re all different and none of us are stats. No one else’s reality is yours. Just get on with life but adjust to and accept your new reality as does everyone with a life changing experience. We are not alone!

Bob

Get the averages out of your thoughts...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/09/2019 1:27 AM EST

I am the same age as your dad, 68. I too am on Zytiga, prednisone and Lupron. Monthly infusions for bone strength plus Oscal (calcium + D), plus a multivitamin. Was diagnosed 14 months ago. PSA at 800, now at .1. I get tired after hard work too. Always was very energetic. How long will I live? Don't know. I'm counting on more than 5 years. Won't settle for anything less. Have pain only in my side, especially after hauling firewood for our stove. Need to exercise more like walking and light weights. Keeping a positive attitude is always good. We'll keep each other posted on our exercise results. Good luck to both of you.

maybe u guys are worrying to much, your psa is below a normal healthy male so back off. these drugs do have effects on ones body. relax take a couple of months without any mets and see what happens.

charlie

Nothing to worry about charlesmeyers1964. When you are getting blood to stay alive, it is called a wake up call. joined this forum for information. No worries.

51na1a profile image
51na1a in reply to lincolnj8

May I inquire what your monthly infusions for bone strength are ???? P folks or another agent ?

lincolnj8 profile image
lincolnj8 in reply to 51na1a

Zoledronic acid (Zometa) was given to me monthly but after over a year it is given to me every three months. This can slow bone loss and may help prevent bone fractures. Zometa is used to treat high blood levels of calcium caused by cancer (also called hypercalcemia of malignancy). A blood sample is taken followed by a measured infusion that usually lasts about 45 minutes.

will i have to mets in my groin, 1 on rib, 2 on my back and 1 in my aortia arch and i'm not tired. how old is he? i'm 72 going on my 11 year so i have no idea don't drink high protein, or any good foods so??????????????????????????

charlie

On this forum someone had a link to getting Zytiga from India. $300 a month. Probably comes from the same manufacture

You're right, I tend to worry too much. Not for myself, but for my wife of 47 years. And yes I get tired. Can't go off my medications. It took 4 pints of blood to stay alive 14 months ago. I'm so happy for you that you're going on 11 years. That is an inspiration for many of us. Thank you.

Ian2017 profile image
Ian2017 in reply to lincolnj8

Very interesting. I had much the same .. 4 transfusions and 4 days in ICU with no recollection of anything except a series of hallucinations. Haemoglobin dropped to 3. Never explained. Was your situation similar?

lincolnj8 profile image
lincolnj8 in reply to Ian2017

Yes, very similar Ian2017. I had no hallucinations just extremely weak and light headed. On oxygen because I couldn't breath. Lots of B-12 shots. We must be strong to pull through that ordeal. I think my M.O. is happy with my recovery. Bet yours is too.

Ian2017 profile image
Ian2017 in reply to lincolnj8

Yes, indeed she is. She reminded me recently that with my haemoglobin at 3 I was "technically dead"! Nothing to brag about. It was a harrowing experience especially waking up in front of a palliative specialist. One of the first things I did was to review my will and make a list of passwords. -)

lincolnj8 profile image
lincolnj8 in reply to Ian2017

I already had a will. My wife called in the family to see me. She thought I wasn't going to make it. I couldn't eat anything. I had no idea why I was so sick. I didn't know that we were technically dead. I knew that I couldn't breath. So oxygen came with the blood transfusions. Makes you look at life differently now

I subscribe to the advice to pursue the best treatment regardless of the averages, and I hope not to bring wrath upon myself from those who have recommended to ignore the averages, but I find it useful to have some idea of the typical prognosis, for which I have used the Sloan-Kettering web-based tool for prostate cancer nomograms. There are different versions; here is the web address for the version that I think might be most useful to you: "mskcc.org/nomograms/prostat....

The paper cited under "Supporting Publications" in the above web page, "Nomogram Predicting Prostate Cancer–specific Mortality for Men with Biochemical Recurrence After Radical Prostatectomy" (ncbi.nlm.nih.gov/pmc/articl... describes a study, results of which one could infer were used for the nomograms. That reference, along with the inputs for the nomogram, indicate that those nomograms do not extend to delineating treatment after BCR, and states "Our model predictions may not be applicable to contemporary patients because of substantial changes in the treatment of CRPC over the time period of the study; indeed, 53% of our PCa deaths occurred in the pre-docetaxel era and virtually no patient received abiraterone acetate and enzalutamide [31–36]. Given that the survival benefit associated with these agents is several months, it is unlikely the survival predictions of our model will differ substantially from expected survival and model discrimination may be unaffected. Nevertheless, it is appropriate to counsel patients that the model predictions are based on conventional secondary therapy administered at or before clinical progression." For me, the take-away from that is to follow the advice that others typically provide at this web site, to engage the proper medical professionals, seek advice from others in a similar situation such as at this site, and recognize that to obtain and use the best available information can entail digging into reports from relevant studies of treatments. Best wishes!

Dx in 2012 at age 71, G8, PSA 19, metatstatic (two pelvic bone mets). My urologist told me no radiation or surgery is appropriate because my PCa is metastatic. He put me on Casodex and Eligard (Lupron). I asked him how long I had. He said the drugs would work for two or so years. Then going with the averages, he said I would probably expire by the fifth year. My wife after two years came to a meeting and left feeling he was an incompetent jerk. She told me I needed to spend some time researching natural supplements. After some false starts, I developed a regimen of supplements with IP6 as the most important. That began in 2015. We moved in 2016 to Tampa, FL - where it is now springtime - and my new doctor has me on Lupron only. I am not yet resistant to Lupron. So much for averages. Few of us know when our time is near. These posts will give you more background:

healthunlocked.com/advanced...

healthunlocked.com/advanced...

Your dad may find these videos of interest as he considers essential diet changes. I am biased as I became a vegan in 2017.

nutritionfacts.org/video/tr...

nutritionfacts.org/video/tr...

I should add I have had no complications or crises over the past 7 years.

Good luck to your dad. He very likely has many years ahead.

CalBear74

BarronS profile image
BarronS in reply to CalBear74

Thank you for the kind words. My mom is really into the supplements but my father is very grounded in western medicine approaches due to my mom being on the bit nutty side. I will have to discuss with him these findings. Thank you for the information.

Hope all is well.

CalBear74 profile image
CalBear74 in reply to BarronS

Your father needs to understand my main supplement IP6 is the focus of AKM Shamsuddin, MD, Ph.D. at the University of Maryland Medical School. Dr. Shamsuddin has taught and conducted research since there since the 1980's. His work is considered complementary medicine, not alternative medicine which personally I am very skeptical of. Here is his book which your father will find exemplifies the best traditions of western, evidence-based medicine. You will both enjoy this book.

amazon.com/IP6-Inositol-Nat...

This website of Dr. Shamsuddin gives very succinct explanations of the underlying science:

ip-6.net

Additionally, every supplement I take has been validated by cancer researchers who have articles published in referreed journals. The key website is pubmed.gov for retrieving research abstracts on the natural supplements listed in my post.

Good luck.

CalBear74

Will be 2 years from diag. March 2019. No RP. Extensive bone mets, abdominal lymph node mets. 24 months chemo, 18 months Xtandi. Have been at 0.2 for last 6 months. Was 59.9 psa, gleason 9. Will be 69 in a few months. Don't do heavy work because of spinal compression. Otherwise get around just fine. Have foot neuropathy from chemo. General aches and pains from cancer, drugs or old age? Guess it could go south at any moment, but Florida sounds really good this time of year.

BarronS profile image
BarronS in reply to monte1111

I'm glad that you are moving around fine and your PSA is down to 0.2. That is fantastic news 2 years from diagnosis. I'm hoping that you have many happy years to come.

As I like to tell my (insurance) clients: there is only one person who knows how long we have on this earth and he’s not telling.

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