LIFE EXPECTANY

[joeoconnell]

after trying cannabis oil for several months, instead of my PSA going down, it almost doubled within the last three months and that in spite of my still being on Lupron. urologist suggested i start on chemotherapy as it would extend my life expectancy by 18 months. i asked him what my life expectancy would be if i did not. here's where it gets interesting. he said he didn't know because he doesn't have a crystal ball. this being the case, then how do they know it can be extended by 18 months. what is the cut off point ? am i the only one that sees the absurdity in this ?

[CERICWIN]

What the doctor was saying about 18 months is a very outdated statistic. Besides, we are not statistics, we are individuals.

I'm on Xtandi, the stats of which are that the upper limit of efficacy is also 18 months, and yet this month I'll have been on it for two years, or 24 months.

When the Xtandi fails, hopefully I'll move on to another drug (I'm too weak for chemo, according to my oncologist) and I don't have an "expiration date."

In view of your situation, I suggest you ask your doctor about putting you on the triple blockade of Lupron, bicalutamide and Avodart.

There are other drugs, Xtandi, Zytiga and more, so don't give up hope.

When I was first diagnosed, I had a very high PSA of 744, Gleason 8, and metastases to "innumerable" pelvic lymph glands, spine and sacrum. Statistically, I should have already passed away, but almost four years after diagnosis, I'm still alive and kicking. It's been a rough road, but I still fight on.......

CERICWIN

[joeoconnell in reply to CERICWIN]

thanks for your impute. i have been keeping tabs on you... you are tougher than nails

[CERICWIN in reply to joeoconnell]

Joe, thank you for the compliment and you're right---I am tougher than nails---but not all of the time.

I have times when I feel down, depressed and full of despair. I've cried many tears, especially over a couple of good friends that I've lost this year.

And it's okay to have those feelings; we're not made of stone. We are on just about the most difficult journey that a man can face.

I try to face it with courage and grace, and keep a positive mental attitude, especially when encouraging others.

But I'm not special;I'm just a poor sap who happened to get prostate cancer, and if I can get through this, you can, too.

Eric

[joeoconnell in reply to CERICWIN]

thanks for your comments ... you are an inspiration .

[CERICWIN in reply to joeoconnell]

I should add that I never thought of myself as a particularly strong or courageous individual, but somehow I find the strength to cope when I need it, and manage to get through the setbacks.

Eric

[erjlg3 in reply to joeoconnell]

YES HE IS!

[paulofaus]

Hi Joe, I'm by no means an expert on the subject, but what I have read is that there are many, many variables with CO. Did you produce it yourself, from high THC, plant, which is Indica strain? Also, did you take it 3 times a day? I have read about some amazing anecdotes of success with using the oil. Another question, do you have any root canals? I have read that these can make it difficult for your body to heal as root canals trap, very toxic microbes (I suggest you do your own research on this one). In summary, I guess I am saying, I wouldn't give up on the CO, but by all means, seek the best possible traditional medical advice you can source at the same time (that's what I'm doing).

[joeoconnell in reply to paulofaus]

i hope it works for you. it was a let down for me. i had high hopes. i started out on hemp oil, then i heard that wasn't the way to go, so i switched to cannabis oil. this made me feel less than well . here in Colorado if you get Dr's prescription you pay less for product. i decided to pay 80.00 in cash to get advice. the Doc told me i should have started out using smaller doses and wok my way up. he said to forget cannabis i have so many other conditions that will kill me before the prostate

[Wassersug]

A quick comment on those who are putting any trust into Cannabis extracts. A check in PubMed fails to reveal Phase 2 or 3 clinical trials with humans showing that they slow PSA doubling time. Despite PaulDHodson's statement "I have read about some amazing anecdotes of success with using the oil," one should be aware that anecdotal testimonials reporting cancer cures with Cannabis extracts are profoundly biased. That's because all those who relied on them and died are no longer around to provide testimonials.

If anyone here knows of good, clean, blinded data showing that Cannabis oil or other cannabis products slow the progression of prostate cancer, could you please post the references.

Joe, The absence of any data showing benefit form Cannabis products doesn't mean that you should necessarily stop using them. I know of no data, however, that say that cannabis oil accelerates the development of advanced cancer.

[sinjonn]

Hi Joe, what the others have said is correct. Everyone is different and the doctors have no idea how well a treatment will work for you.

I was new and clueless when they told me that Lupron would be good for at least 2 years. It lasted 12 months for me. They put me on Zytiga and Xtandi and said it should work for 2 years. It stopped working after 7 months.

Now they want to put me on Docetaxel chemo which as you mentioned might be good for 18 months. I do not believe anything they tell me anymore.

Some guys are on these treatments for many years with good response which I hope will be the case for you.

When I first started with oncology they told me they have no idea at all about life expectancy, could be one year or 10 years. Very helpful. When the doctor left the room for a moment and accidently left the computer open I accidently looked at what he had written. Life expectancy of 31 - 35 months!

Do all your own research and get a second opinions is my recommendation.

I think the guys on this site know more than a lot of doctors and especially more than residents and interns. Good luck to you in your journey. Sinjonn.

[erjlg3 in reply to sinjonn]

The doctor gave my husband 5 years if the cancer escaped the prostate 10 years if it did not escape the prostate. It is escaped the prostate. He is now going on 13 years since then. 8 years past what the doctor said he should have lived too.

Jackie

[Hidden in reply to erjlg3]

For someone just diagnosed last month at age 66 that is encouraging. I'm sure that you were a big part of that success.

[erjlg3 in reply to Hidden]

Thank you WSOPEddie and good wishes for your success and longevity!

[mshariff]

Joe, as mentioned we all react differently to drugs. There is no 18 months magic in Kemo. They may switch to different types of Kemo if one does not work.

[adlerman]

I guess no one ever asked him the same question you did so he had no answer prepared. Sounds like he was selling chemo and made up the 18 months selling point.

[bryson43]

Have been on chemo taxotere for 18 months and PSA only 12 -diagnosed 11 years ago with metastatic prostate cancer PSA was 24 and Gleeson 4+4 so hormone therapy worked for 9 years before chemo -yes 18 months is an average response to taxotere but some do better and some do worse -no one can predict life expectancy but doctors can only quote averages and they are always reluctant to do so -when I was diagnosed in 2005 the average life expectancy for someone in my situation was around 3.5 years although around 10% did last 10 years -now with the newer drugs the life expectancy has increased somewhat-I have always added complementary treatments to my program and have found Qigong to be very effective-I was very reluctant to start chemo but it has worked for me with only fatigue as a side effect and I still have Zytiga or Xtandi as additional potential treatments

[mshariff]

Yeah, we discussed life expectancy too. The best answer was to enjoy and appreciate our life ONE DAY AT A Time! So live for the moment.

[Hidden]

Hi Joe,

If at all possible, I suggest that you see a medical oncologist. Preferably one that specializes in prostate cancer.

Good Luck, Clint

[JoelT]

Joe, When you were diagnosed you had a high PSA and Gleason, so your cancer is to be considered aggressive. The research shows that newly diagnosed men with aggressive cancer and who have not yet started hormone therapy can have a life extension benefit. The research is silent (not done) about men who, like you, have started hormone therapy.

Given your current situation you should start some other therapy now. The question you need to decide is whether it should be early chemotherapy, Xtandi or Zytiga.

Joel

[Magnus1964]

Have you been on any hormonal oblation drug, i.e., Casodax, Zytiga, xtandi? if not your doctor may be rushing you in chemo. Ask, your in charge in your doctor.

[joeoconnell]

i have been on Lupron for 10 years + Casodex. Casodex made me very depressed so i stopped it, some time ago. i have a pace maker so i don't know about Zytica or Xtandi as they increase heart rate

[DFZ4835]

Joe I have been on zytiga for 18 month with no problems with my pacemaker. My cardiologist is well aware of my many health problems. He kept track heart rate for several months and sees no effects of the zytiga. My oncologist also watches all my health problems especially going into a new medication.

Dennis

[Bogiedog]

Four years ago, my esteemed oncologist said I had 2-4 years. This year he said I have 2-4 years. I agree that it's best to forego lifespan estimates and focus on appreciating your life as you live it--minute by minute. My disease exploded a year and a half ago. PSA is tripling monthly (1400+ at last reading) and mets so numerous that the scan report no longer bothers to list them.

And yet, this year and a half has been the most rewarding of my life. All my relationships have improved while I have written 143 poems. I have to say this has been the best period of my life. Screw predictions. Screw Prostate cancer.

[joeoconnell]

i am inspired by what you said. are you on FB ? i would like to have you as a FBF

[Fastf250ps]

No, Joe, you're not the only one who sees the absurdity of it. Were you taking black tar cannabis oil (like Rick Simpson Oil) or just cannabis??

[Doofusthefirst]

The 18 month figure is an average based on clinical trials. Keep in mind that some or many of the participants in clinical trials may be in bad shape and therefore have less life expectancy at the start of the trial. In the case of Provenge, the trail stated that it extended life by three months however, some men had survived for two years and were still alive at the time the announcement was made (this was several years ago as I remember).

So when a doctor estimates how long you will live, it is based on data that may already be out of date but also based on just the averages from who knows how many years ago. Additionally, technology is moving faster and faster bring more and better solutions to market.

Live long and prosper joeoconnell.