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Advanced Prostate Cancer
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Hoping for some reassurance and insight

Hi everyone

My Dad is 70 and was diagnosed with Prostate Cancer in August. Unfortunately it has metastasised to his lumbar spine, 2 spots in his pelvis and a pelvic thyroid, gleason score 4+5=9 and PSA 68. His first PSA check was in December 2017 and it was 7 so things seem to be progressing quite quickly. This came as a great shock to us because he hasn't and doesn't have any symptoms.

The MO said his aim is to try and extend his time with us by 50% which equals 1-1.5 years, though he said some of his similar patients have survived a few months to 3 years. Obviously none of those options sit very well with us. I want at least another 10 :(

He has this week started hormone treatment and in 3 weeks is adding chemo to the mix. We also just sent his bloods away for Gene testing.

Aside from this he has atrial fibrillation as well as some blockages and is pre-diabetic. We are also meeting with a radiologist in the next few weeks to see what he can suggest. I've looked in to some of the results of SABR treatments and they look promising...?

While I wouldn't wish this on anyone, I guess I'm just really hoping that there are some men out there that had a similar diagnosis and are doing well, or living longer the the timeframes we were given. And also, if anyone could give us some reassurance that we're doing the right things. The oncologist mentioned that gut health is the most important thing on chemo to avoid infections and sepsis. Can anyone recommend what they do to avoid this?

Are there any tips anyone can share in relation to treatments and side effects?

Thanks, Steph :)

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Yes. Get him in Zytega. Early Zytega when combined with lupron was shown to reduce death by 40%. He will need to do weight training to avoid the side affects of lupron and Zytega. Work hard and he should handle it well.

Schwah

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Thank you Schwah, I'll mention that to our MO.

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I don’t know how and why your doctor could give such prognosis. If you are not in a specialized cancer institute(eg, Mayo, MSK, etc) I would highly recommend get him a second opinion there. As Schwah mentioned above, Zytiga plus Lupron has been shown to be very effective in men with the advanced disease.

I’m glad you’re getting his genetic testing done. There are a few targeted therapies that maybe helpful also.

Lastly, I would VERY closely monitor his cardiovascular health. That’s where the treatment causes the most damage.

There are members here with worse diagnosis who are living 12+ years post diagnosis. Ignore what you heard about the prognosis and focus on the issue at hand.

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Great advice.

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I wish he didn't tell us timeframes either and was more positive. I don't know whether it was to rattle of random facts or make my Dad not get his hopes up?? I wanted someone with a bit more of a positive, fighting for my Dad attitude and did recommend a second opinion (and will definitely do so after this) but he was very keen on this MO as he is a Professor in MO and clinical scientist so he likes the fact he's researching as well and therefore should know of the latest and greatest.

His heart does worry us a lot especially since he's had a triple bypass and is on bloody thinners for his AF...

Do you know of those type of clinics in Australia?

Thank you for the reply and reassurance, much appreciated. Now just to instil it in to my Dad to stir a fighting spirit.

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I think ADT+chemo is the perfect first choice for men with multiple mets. In clinical trials, it extended median survival by nearly a year and a half. Whether adding Zytiga on top of chemo + ADT is beneficial seems reasonable to me, but we await evidence.

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Thanks Tall_Allen. I guess these are the stats he was referring to? I will definitely be recommending anything I hear about from advice.

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3.5 years ago I was the poster child for this stuff. Mets here and there, lymph nodes affected most everywhere and a psa of 850. Went on ADT and did the chemo thing right off the bat.

Today, psa has gone up to 0.53 and they see a small met on my l5 vertebrate.

You need a new MO. "Similar patients have survived a few months to 3 years". That's laughable. Work hard and you might get that 10 your hoping for. The whole matter is a roll of the dice. Trust the doctors, just not the one you have now.

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Wow that's fantastic, good on you!

Have you tried any other treatments or alt therapies or has it just been chemo and add that have given you your great results?

Thank you so much for the reassurance! Definitely need a more positive MO.

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As stated above did chemo, Have been on Lupron from the start. They also started me on Casodex right away. About 1.5 years ago, (2 years into the start of treatment) my psa went from >0.1 to 2.1 in 4 months time. So..they stopped the Casodex and it went back to >0.1 again. In the past year it has crept up to the current 0.53. When it hits 1 I'm going to start Provenge and go from there. Heck, 3.5 years later and I'm just getting started.

Now relax, this is the beginning of a new life, adjust.

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If you are in Australia, getting to a local Prostate Cancer Support Group might help in many ways as time goes by. See:

prostate.org.au/support/fin...

I had an initial PSA of 5,006 at initial diagnosis at age 65 with LOTS of mets to bones and lymph nodes. In November, I will have lived with this disease for 5 years. Current PSA is 1.9. (My major treatments were Lupron, Provenge, and Xtandi. There was some bone protective agent Zometa in the mix, too. If I had been diagnosed today, I probably would have had the Lupron along with either early chemo with docetaxel or early Zytiga, per the results of more recent clinical trials.) I don't do anything especially "alternative".

There were never any guarantees about which treatments would or would not work, and for how long. We and our evolving cancer biology are individual. I have personally known a man who has lived with advanced prostate cancer for 12 years. I have known several others diagnosed later than I whose cancer cells did not respond well, despite multiple treatment options. It is important to live in the present moment.

Learning about ALL your Options is a worthwhile effort. In Australia, this may be more likely to happen at the usual larger treatment sites who see more patients, and who offer more treatment and clinical trial options. Perhaps places on a par with:

Peter Maccallum Cancer Centre, Melbourne

Macquarie University Hospital, Sydney

Adelaide Cancer Centre

Their websites will have links to their advanced prostate cancer centers of expertise.

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Thank you so much for your reply ctarleton, the advice and reassurance. It definitely it gives me hope and I will definitely pass on these stories to my Dad.

I will be sure to look into those centres as well and see if they have any similar ones in Brisbane.

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what drugs are you presently taking? Is the 1.9 PSA your lowest?

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My lowest PSA nadir after 5,006 was 1.0 on initial Lupron and Zometa after only about 8 months on initial ADT. (I do not get the ultra-sensitive PSA test, which reads in hundredths.) Nearing the 2 year mark my PSA had started to climb back to between 4 and 5, and a short re-challenge with Casodex (bicalutamide) brought it back down around 3 for a few more months. I did some consulting, genetic testing, PSMA PET imaging, and Provenge over several more months with a rising PSA and generally asymptomatic mets. With the PSMA PET showing about 10 widely scattered "hot" areas, I eventually added Xtandi in Dec 2016 with a PSA of 95.0. My second nadir of 1.2 was reached in just a few months. A slow increase began about 6 months ago, bouncing around between 1.5 and 2.0. My most recent PSA of 1.9 was the same as it was about a year ago. Still relatively stable enough to stick with this mode of treatment for a while longer. I'm currently on Lupron depot 3 mo., Zometa IVs 3 mo., and Xtandi, along with the lowest dose of Metformin for occasionally borderline glucose levels (and perhaps some potential benefit in regards to IGF-1 (Insulin-like Growth Factor 1) and the cellular m-Tor (mammalian target of rapamycin) pathway?). Once in a while I take some Vitamin D3, but only enough to get any blood tests off the minimum levels, but not to boost it to higher normal range levels. They say I should consider taking some oral Calcium (e.g. Tums or the like), but I don't do it, and am satisfied to get most such things from my diet, in general. I try to tend toward a generally heart healthy diet, but am not always successful in terms of contents or portion control. I don't do any of the "alternative" treatments, supplements, or diets.

Charles

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1, 1.5 years? Ask for a second opinion please, doctors that give random time estimates are not good doctors. He's not even castrate resistant yet, how can this MO predict such a poor outcome? Just ADT alone should give him 1-2 years and he has a lot of other options too down the road after it.

Be also sure he eats healthy and stays phisically active, so he can tolerate all the side effects of the treatments without having complications.

PS: My father wasn't supposed to see 2018 according to his old MO, but he's still here and doing well with a low and stable PSA.

Best wishes.

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That's fantastic news about your Dad. I hope his results stay that way for a long, long time!

I have a feeling the MO meant that the ADT and chemo treatment will give him those timeframes and then I guess we would look in to other options. Still not nice to here them..

I am currently looking in to a exercise physiologist to help him with a program. Thanks for the tips and encouragement :)

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As with all the other guys, I too think that your Dad's doctor gave too pessimistic a prognosis. One guy I know was diagnosed (IIRC) in 1996, had a failed prostatectomy, and was put on Lupron. Eventually that stopped working, but he graduated to Zytiga and other drugs. He's now in his mid-80's and has no symptoms yet. I know another guy who has been on Lupron for about 18 years now and has no symptoms yet.

I don't want to raise unrealistic expectations but I don't want to encourage pessimism either. Much depends on your Dad's response to the initial therapies - Lupron and chemotherapy. The lower his PSA goes, the better the response and the longer the remission that he can hope for.

I wish you both the best.

Alan

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Thank you Alan, all the very best to you too.

Is there any difference between Lupron and Eligard? My Dad is on Eligard and Docetaxel.

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As I understand them, Lupron, Eligard, and Zoladex are all almost identical and have an identical effect in the body. They overstimulate the body to produce "leutenizing hormone releasing hormone" and it's that hormone that in turn overstimulates the testes to produce testosterone which, after a week or two of that, causes the testes to shut down testosterone production.

I remember the makers of Lupron were fined millions of dollars for paying what amounted to kickbacks to doctors for using their drug. They got a grip on the market that way but, as I understand it, the other drugs are exactly as good.

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2 years into stage 4 with spine,ribs and lymph nodes, diagnosed at 65. Don’t give up on Dad ,I’ve read about a lot of fellows that have beat those numbers by a lot. My nutritionist at the center said eat what ever you can stand to eat, keep up the body weight, keep lots of baby wipes around and of all things. Anti fungel cream. Athlete foot creme. Just stay as clean as he can. Fight the good Fight

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Thanks for the good advice and reassurance Larry.

All the very best to you!

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Lupron is given as a shot in the arm or butt...whereas Eligard is given under the skin

in the abdominal area..

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Hi Daddysgirl, where in Australia are you? I’m getting treatment at the Wesley in Brisbane (Icon Cancer Care) and think that the treatment is A1. But also got a second opinion from the Peter Mac in Melbourne and they agreed with everything that’s happened so far.

I was diagnosed in Feb this year and went straight on to ADT (Firmagon) and a month later started 6 cycles of chemo (docetaxel) which finished in mid July. Initial PSA of 168 has gone down to 0.4 so far. Hope to go down to under 0.2 or undetectable. Lots of mets in bones but not lymph nodes or organs. Despite the extensive bone mets both oncologists that I’ve seen said, “you’ll be around for years”. I know resistance will come one day, but I also know that there are many second and third and forth line treatments already available. And there will be more coming. And there will be clinical trials that I can possibly benefit from. So don’t listen to that prognosis you were given. It’s not realistic. Stay positive : )

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Thanks for your reply and for sharing your story.

We're in Brisbane and getting treatment at the PA Hospital. They apparently have a few clinical trials and a research centre there. The Wesley sounds like a good place to get a second opinion from, can you recommend any good MO's?

My Dad has a similar treatment plan. He started Eligard this week and in 4 weeks starts docetaxel. I have to look in to the differences between these ADT drugs...

I like your MO's attitude! Wishing you all the best.

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Ignore the pessimistic outlook your dad’s MO gave him, and seek either a new MO and/or 2nd opinion. As you have seen from the replies in here many men live MUCH longer, including most of us in here.

First, with distant metastasis, understand that his cancer is not curable (at least not at this time). But he can live a long time with a reasonably good quality of life

I agree (as usual) with Tall_Allen. Glad to hear your dad has already started on ADT with chemo. He always has Zytiga (and several other drugs) as a backup weapon. He may not need the SABR right now unless he is having a lot of bone pain. My MO and the radiation oncologist at the Mayo Clinic in Jacksonville, Florida both advised me to hold off on it, saying that the ADT might cause my one pubic bone tumor to ”resolve” on its own. It did, and has “disappeared” from bone scans for over 2 years.

I was diagnosed Stage 4 in May, 2015 (PSA 4.65, Gleason 7 (4+3), and one bone met on the R. Inferior pubic ramus.

3 1/2 years later, with ADT + chemo, my PSA has been undetectable, my testosterone in single digits, my bone tumor resolved, and in spite of some annoying side effects, my quality of life is pretty good. I have very few limitations on my activities and still golf 2-3 times a week.

For gut health he can take a probiotic supplement and/or New Chapter Zyflamend Whole Body to help boost the good intestinal bacteria and support the immune system. He may want to hold off on the Zyflamend until after he completes his course of chemo (which is typically 6 cycles of docetaxel at 3 week intervals). Exercise, both aerobics and light strength training also helps.

Research the potential chemo side effects, and how to minimize them. Not everyone has the same experience, so it’s hard to say what to do for his. Most of them can be minimized with over the counter meds.

So take heart, know that your father’s battle is just beginning, and he should have a much longer lifespan, with a better quality of life, than his MO gave him. 😎. Mark

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Hi Mark, thank you so much for your message, the tips and for sharing your story. Much appreciated.

That's fantastic about your bone mets and psa! Good on you! I hope it stays like that for many many more years.

Thanks again I will definitely pass on the tips. :)

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Have faith....

Do 2015 Gleason 9 PSA about same as your father.

I am still here .... feeling good....

On Zytiga.

Also I turn 70 this month.

Have previous heart attack and also pre diabetic.

So do not give up.

The drugs they offer these days are very effective!

I also have extensive Mets to bone.

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Thank you very much for the reassurance DSEE! Much appreciated.

Wishing you all the best in your fight :)

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to Daddysgirl2018:

Hey Doctor, I feel like I'm a pack of cards. What can I do ?

Doctor: I'll deal with you later.

Screw doctors and their predictions.... your Dad will be around for many many years (that's my prediction and I'm not a doctor). Try to laugh with him...and of course hug the hell out of him.

Good luck and Good Health.

j-o-h-n Saturday 09/08/2018 12:27 PM EDT

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Hahaha! I will pass that on :D

I will do on both accounts!

All the best to you!

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God bless you for caring this much for and about your dad. He's a lucky man. As for your MO's prognosis, I can only guess that seeing PSA jump from 7 to 68 in 8-9 months indicated a very aggressive PCa indeed. Know what else is aggressive? PCa treatments and research. As you've already seen, we got some big guns in this war. Trust in staying positive, using the many, many blogs and NIH medical abstracts to validate whatever suggestions you'll be getting, from doctors and patients. Most of all, trust your intuition. You're not alone. Fight the good fight. Again, you're a blessing to your dad. Stay that way.

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Thanks so much for the reassurance and kind words RICH22. I will do!

All the best to you!! :)

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I'm very similar to your Dad and, according to the oncologists, I'm dead now. Actually I feel great and looking forward to many moons yet. Zometa is great for bone health; the gym and weight training are essential for overall health. None of these quacks can make any predictions worth a damn. Ask lots of questions about your father's treatment plan. There are a lot of people on this group with a lot of knowledge. Take advantage of it and always keep a good positive attitude. That's the key. Keep fighting!

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Thanks for the tips! We've just got him in with an exercise oncologist so hopefully that helps.

All the best to you in your fight :) Wishing you a million more moons.

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Diagnosed in 2011 Gleason 4+5=9 PSA 50 they said I was doomed. Tons of chemo and hormones and now Xtandi. I’m still here! The docs are not God

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