Which treatment plan should we start for Metastatic Prostate Cancer?

[Cheerr]

Hi Everyone,

My dad aged 53 years has recently been diagnosed of Advanced Metastatic Prostate Cancer.

PSA Score = 149 // Hemoglobin = 9

PET CT = Light up spinal bone, ribs, pelvic area

// Bone Marrow Biopsy = Metastatic and infiltrated into the bone marrow as well

Doctor 1's Treatment Plan: Tells me it is aggressive & needs to be treated asap.

1. On 29th June -> Gave 2 Firmagon shots of 120mg each. Need to take a 80mg shot every 28 days from now on

2. Ultracet (Pain Killer) - twice or thrice a day

2. MO wants to start Chemo soon

Doctor 2's Treatment Plan: Tells me not to worry & follow his instructions asap & that its possible to live long by continuing several different medications throughout his life

1. Get a Orchidectomy immediately.

2. Suggested Bicalutamide 50mg (Known as Casodex) everyday.

3. Post Orchidectomy, he wants to start Harmone therapies to suppress adrenal glands etc.

4. He does NOT want to start chemo now. He tells me that Chemo can reduce the life span to a year or so and that

Chemo must come into the picture only later on.

I plan to visit a third doctor just to be safe. But would appreciate any thoughts / opinions based on your knowledge

and experience.

Thanks,

Cher

[JamesAtlanta]

Sorry your dad is having to fight this...

There are many here who can give better overall advice than me. But here’s my perspective:

Starting Firmagon immediately was critical to avoid spinal compression! This should help with the pain and bring down his PSA quickly. Using ADT (like Lupron) or getting having his testicles removed is a personal call. Most men here take the hormone therapy...but others have elected to have the surgery.

When I was diagnosed at 53 also, the Stampede study was just coming out. It recommended early chemo. Later it recommended early Zytiga OR early chemo. I’ve since done both (along with a prostatectomy) and my PSA is undetectable.

In your dad’s case, I personally recommend early chemo and then add early Zytiga. Chemo is not as bad in most cases as people fear. I was able to go through it and still keep working.

Whatever you do, make sure you have a great oncologist who specializes in prostate cancer to advise and guide you. There are lots of changes in treatments and you want to have the most current advice. Post here a request and you can get some great recommendations if you need it. Just say what country and city you live in.

Hope this helps! Your dad has many, many years ahead of him!

James

[Cheerr in reply to JamesAtlanta]

Hi James,

Thank you, I feel quite positive after reading this.

And I’m really glad you have had good results so far and I wish you reach your ADT free holiday soon.

[GP24]

Orchiectomy is cheaper than Firmagon or Lupron but not reversible. So I would start with Firmagon or Lupron and decide on orchiectomy later. You can add Casodex to that, but I would not do that while having Chemo or Abiraterone, which is probably what your doctor plans to use to suppress adrenal glands etc.

You can do either Chemo or Abiraterone, both are supposed to be equally successful against the cancer. I would suggest Chemo, because of the many bone mets.

"I plan to visit a third doctor just to be safe." - That is a good idea. Ask him about radiation to the prostate, this could be benefical, read this:

ascopost.com/News/59392

[tom67inMA]

Sorry to hear about your dad's diagnosis, but is great that he's on Firmagon already and with any luck he should feel some improvement soon.

I was diagnosed at age 50 with lots of mets. Treatment details are in my profile, but I've had chemo and now on Zytiga. For me the hormone therapy dropped my PSA while the chemo dropped my alkaline phosphatase (a market of bone damage).

With the bone mets, your dad should also eventually be put on Xgeva to help with bone strength. If Celebrex is added to Xgeva it provides an additional survival advantage. I'm on both and the Celebrex typically gets rid of any lingering pain I have for the day unless I've really overdone things.

Don't give up hope! I've recently been described as hyper optimistic, but some men have made amazing recoveries.

[NPfisherman in reply to tom67inMA]

I am aware of studies involving Zometa and Celebrex but not Xgeva--

cancernetwork.com/asco-geni...

Do you have any studies with Xgeva and Celebrex? Thank you..

Fish

[tom67inMA in reply to NPfisherman]

You're right, the studies were with Zometa. It is thought they may apply to Xgeva as well, but no definitive proof that I'm aware of. Thanks for pointing that out.

[NPfisherman in reply to tom67inMA]

No problem...with multiple bone mets he likely does need to be on Xgeva or Zometa....I wanted to be on one of those drugs but they gave me a bone densitometry scan and said that even with hormone therapy, my 10 year risk of fracture was low....so.... no med.....SOC--reactive not proactive...

Fish

[tom67inMA in reply to NPfisherman]

Interesting. I haven't had a density scan, though they said I could get one if I wanted it. I specifically asked if I needed to be careful about breaking bones and they basically said "use your judgment"... to they guy that's pulled both hamstrings diving to catch frisbees (one each on two separate occasions, just to show that I'm a slow learner).

Anyhow, the MO has been giving me Xgeva monthly, despite my protests of side effects and a root canal being redone. He described the cancer as "it goes to the osteoclasts and says 'I'll give you $5 if you carve out a place for me to live'" I expect that will be dropping to every three months now, because he said I'll only need follow-up appoints every three months.

Also, a bit more poking around on the interweb brough up this meta-analysis that says any NSAID use appears to reduce metastases:

ncbi.nlm.nih.gov/pmc/articl...

My takeaway is if you have any pain whatsoever, don't tough it out, try an NSAID first.

[NPfisherman in reply to tom67inMA]

Inflammation is part of what I call the 4 Horsemen of the Apocalypse of Prostate Cancer-- Inflammation, Glycolysis, Cholesterol, and Hormones. These 4 Horsemen play a role in advancement of the disease...My philosophy is control the Horsemen and slow down the disease... Many of the supplements I take are anti-inflammatory... I take Berberine--MO won't give Metformin-----Glycolysis, and I take a Statin--when Bempedoic Acid becomes available, then I will add that for Cholesterol and it is an ACLY blocker--blocks tumorigenesis pathway, and on ADT with Zytiga--Hormones... That is my philosophy....all IMHO...

I discussed Celebrex with Xgeva a few days ago with TA--he said, no studies but believes it might work because of the Zometa trial...kind of surprised no study comparing Xgeva and Celebrex and Zometa and Celebrex, and then 2 other arms for just Xgeva and Zometa alone...it would be helpful....They study what they study...

In the meantime, we watch the Science....and HOPE !!!

Fish

[Hidden in reply to NPfisherman]

Knock The horsemen right off their horses.

[Schwah in reply to NPfisherman]

Fish, you need to be proactive. There’s a clinical study that says Celebrex and Zometa together reduced deaths 22%. If you want it then be more forceful with your MO. If yours one of the 22% that dies early because your MO wouldn’t do it, will he even apologize ?

[NPfisherman in reply to Schwah]

Apologize? BWAHAHAHAHA !!!! Good one, Schwah.... How many stories on here of MD's misdirecting patients... j-o-h-n posted on behalf of one guy a few days ago...why he didn't have brachy boost in the beginning beats me....pjoshea13 posted on "watchful waiting"....I think that's a ticket to a date with the Grim Reaper..(and I ain't talking about a member of the motorcycle gang either)... I have my genetic testing in August... I will be doing the Dukoral vaccine come the fall.... Just hoping to get my polysomnogram---CPAP titration study done--they call it mild sleep apnea but I think SpO2 of 78 (the lowest) is more than mild....

Fish

[Schwah in reply to NPfisherman]

How are you getting the vaccine? And what does “sp02 of 78...” mean my friend ?

Schwah

[NPfisherman in reply to Schwah]

Sorry--spoke in Medicalese...SpO2 stands for peripheral capillary oxygen saturation, an estimate of the amount of oxygen in the blood. More specifically, it is the percentage of oxygenated haemoglobin (haemoglobin containing oxygen) compared to the total amount of haemoglobin in the blood (oxygenated and non-oxygenated haemoglobin).

I am getting the vaccine from a Pharmacy in Canada--no Rx needed...

TGIF, Scwah--enjoy that vacation, amigo...

Fish

[Schwah in reply to NPfisherman]

Gotcha. And thx Fish. I’m probably going to do the vaccination. To me the stats are so enormous for lowered mortality, that even if they didn’t do A great job of factoring out income , age etc, it’s hard to believe there’s not some benefit right ? And the side affects seem only temporary with apparently no long term negative impact? Can you give me your risk reward analysis on the vaccine. Did you MO send the prescription on your behalf? If so, He is on board or a reluctant participant?

[NPfisherman in reply to Schwah]

No MO on board--No RX needed--

I have replied to TA on this issue and his response was that the Swedish study is an epidemiological study and would require of course--a randomized double blind study to confirm what the epidemiological study shows. The issue is... Can you wait?? I can not-- I agree with your analysis--the Dukoral vaccine is like $80 or so...and SE profile is low...

One must make sure it stays cool enough in shipping--thus late fall/ early winter for me--and take both doses (oral) within 2 weeks.

I believe it is related to the tumor microbiome signaling and likely slows tumorigenesis by effecting mRNA in the microenvironment--NOTE--that is conjecture based on scientific mind deduction and not research. ( You know my mind is crazy--RIGHT??) Who else goes by ....

Don Pescado or Fish

[Schwah in reply to NPfisherman]

I mean 45% lower deaths can’t all be bad structuring of a study. I’m going to do it too. Thx

[NPfisherman in reply to Schwah]

Exactly--even if you factor in say--higher income--more treatment--age, etc....45%--all that stuff doesn't cover that big of a number IMHO--you will most likely want to take the booster every 15 months to 2 years (as I recall), but that is less expensive than the initial vaccine...

Take care

Fish

[gleason9guy in reply to NPfisherman]

Not to butt in here, but is there a correlation between low blood oxygen levels and advanced prostate cancer?

[NPfisherman in reply to gleason9guy]

There is some evidence regarding hypoxia and prostate cancer progression:

ncbi.nlm.nih.gov/pmc/articl...

Fish

[gleason9guy in reply to gleason9guy]

Thanks for the info. This just connected a few of the dots that the physicians couldn't be bothered with.

[Hidden in reply to NPfisherman]

You need a cpap ? Darn..

[NPfisherman in reply to Hidden]

The newer ones are much better.....tried one years ago but couldn't tolerate....now, they have several different masks.....it will be ok....and I can still work on losing the last 20#....There is also a device called the "Powerbreathe" which I may order for $50.00 which helps as well....It'll be Ok, LuLu....I will not bring to Cujoepalooza....LOL...

Don Pescado

[Hidden in reply to NPfisherman]

Haha ,why not? Do what you got to do .. probably cumbersome to travel . Take care Don.

[jdm3 in reply to Schwah]

Hi Schwah. I don't disagree with you here, but wanted to add that my MO who was one of the investigators on these trials said he does not think for Zometa is necessary or advisable for men with single mets and good bones who responded well to SBRT or ADT. Definitely would consider for multiple mets.

Interestingly, Dr. Turner at Prostate Oncology Specialists recommended Xgeva for a couple years, and my MO waived that one off too so I'm not sure what to think. Ugh.

Stay well.

[NPfisherman in reply to jdm3]

My MO did an analysis called FRAX and decided no on Zometa or Xgeva based on 10 year fracture risk--this included hormone therapy. My risk was 3% for 10 years using bone densitometry study, and thus--no meds. Did he factor in the possibility of bone mets--doubtful, but lifting weights helps bone density. adequate Vitamin D and calcium helps. .

No worries, enjoy your vacation, my brothers. You and Schwah are both doing well. Keep it up and keep fighting....

Fish

[jdm3 in reply to NPfisherman]

You da man! You have good bones!! Nice 👍 Keep on doing what you’re doing.

I have not had the bone density test, but the MO was not concerned. I have been playing sports and lifting weights my whole adult life.If I have to do ADT again or get more bone mets (God forbid), then I might have the bone test and consider Zometa-or Xgeva.

For now, just trying to take a break from all the subscription meds… Except of course Avodart and low dose statin.

🙏

[NPfisherman in reply to jdm3]

Why low dose? My HDL and LDL are almost equal--I would prefer to have LDL less than HDL, but still happy with current results. When Bempedoic Acid gets approved in Europe, I will likely achieve that goal...See you at the palooza, my brother...Have a great week...

Don Pescado

[jdm3 in reply to NPfisherman]

My cholesterol was a little (wee bit) high so the family doc with conventional wisdom wanted me to start statins. I resisted for a while because I don't like to take so many pills and some argue that elevated cholesterol is not bad (in fact may be protective in some ways), and it is the fractionation of the lipoproteins that must be considered in the context of CVD. To his credit my doc did some research and decided simvastatin was good considering the PCa. I agreed only because I thought it might have some beneficial effect with the PCa. He started me on 5mg and my lipid profile looks fine now - wish my HDL was higher, but that is affected by ADT too and may come back some. My MO said we do not prescribe statins, but probably won't hurt and may even have some benefit. My ND said he doubts 5mg has any significance in the context of PCa and thinks I should stop the statin. My friend the cardiologist said he didn't even know they made 5mg pills. They usually start patients on 20mg and go up from there.

Long winded answer to a simple question :-).

Take care!!!!!

[NPfisherman in reply to jdm3]

My HDL was like 58 and LDL of 65....anyway...see you at the palooza...have a great week....

Don Pescado

[Cheerr in reply to tom67inMA]

Hi tom67inMA,

Thanks for the suggestion on Xgeva, i'll ask my MO. I don't wanna give up at all. And thankfully I get to meet so many optimistic people over here.

Few Questions:

1) I see you started with Chemo a month after ADT (Eligard). Is there a usual time frame when Chemo must start after ADT?

2) Is Chemo usually 6 cycles? And does the experience get worse with each passing cycle? Can we ever get back to feeling normal during or after the Chemo is completed?

3) Has you MO suggested Chemo followed by Zytiga (before one is Castrate Resistant) as the best plan of action?

- TIA

[tom67inMA in reply to Cheerr]

A few answers

1) in my case, the goal was to start chemo ASAP after recovering from bladder surgery and radiation to a met. Doing chemo while ADT is still working gives better results per the STAMPEDE trial.

2) 6 cycles is the standard treatment, which is what I got. The last two cycles were noticeably harder. For me it was fatigue, nausea, heart burn, and getting winded easily (relatively speaking) that were the worst symptoms. Exercise helps greatly! It took at least a month after the last infusion before recovery really got underway. Three months after the last infusion I'm normal enough to return to work.

3) yes, for me. There is a study underway, PEACE-1, which is testing this sequence right now, but no results that I'm aware of.

[NPfisherman]

Welcome to the forum that no one wanted to join, but we are glad it is here....You have had some great suggestion... 1) JamesAtlanta suggested continue ADT and have Chemo and then Zytiga... 2) GP24 suggested radiation to the Prostate...3) Tom67in MA suggested Xgeva... That is the beauty of this forum.....many knowledgeable posters....

I would do all of them.....get on the ADT initially.....do the chemo and radiation--if they will allow you to do Brachy Boost--irradiate Prostate and do adjuvant radiation, not salvage--be sure you are on ADT for 6-8 weeks before radiation--there are studies showing synergy with early ADT and radiation--see below:

ncbi.nlm.nih.gov/pubmed/281...

Finally, look at getting on Xgeva for bone density...be aware that your Dad's teeth should be in very good condition as people with gingival disease and lots of dental work are at increased risk for osteonecrosis of the jaw--see below:

ncbi.nlm.nih.gov/pmc/articl...

As for the orchiectomy, I am unaware of survival benefit with orchiectomy... he has to decide if he would like to forego the routine shots....

Best of luck to you and Dad....

Don Pescado

[NPfisherman in reply to NPfisherman]

Oops....the Zytiga after chemo and radiation...Add Xgeva afterwards...Good luck....

Don Pescado..

[Cheerr in reply to NPfisherman]

Hi Don,

I feel blessed to have found this forum for sure and thanks for the suggestions.

Few Questions:

1) So monthly shots of Firmagon would be equivalent to having a orchiectomy? In that case the orchiectomy could be decided later as Dad already started with the shots and I wouldn't want him to go through any surgery which can be avoided.

2) I shall check out with my MO regarding Xgeva. And thankfully dad has never had any dental issues. (Hope it remains the same).

3) I just am too afraid of - 'Chemo', however I did see many suggest to go for ADT + Chemo and most of them did not have any major side-effects. Unfortunately I have heard some Chemo-horror stories. Is Chemo life threatening? Like can major complications occur while undergoing chemo?

- TIA

[NPfisherman in reply to Cheerr]

I never had chemo--low tumor burden luckily, but the main issues that most complain about here with chemo are--- fatigue, hair loss, anemia--low red cell count, leukopenia--low wbc count, and peripheral neuropathy--tingling and numbness in feet and hands...

Firmagon will take care of things for now ....in recent studies, it seems to have a lower cardiac risk profile than Lupron...Most people complain of injection pain and swelling.....ice at the site seems to help per the forum...

Good luck...

Don Pescado

[Magnus1964]

I was diagnosed at age 46. I had the orchiectomy. Being diagnosed so young is a real risk. I had radiation a few years later, after my PSA started to rise. I then went to casodex, which was very successful for 5 years. Then on to drug trials, etc. I am still here 27 years later.

[tom67inMA in reply to Magnus1964]

Magnus is one of the reasons for my hyper-optimism. It's too bad I can only "like" his replies once each time he mentions his 27 year survival.

[Magnus1964 in reply to tom67inMA]

Thanks Tom, I like to mention that once in a while. I will never forget the first time I walked into a cancer support group. I was diagnosed and had surgery a few weeks before. To see and meet other cancer patients who were diagnosed 15 or 25 years ago and leading good quality lives was so uplifting. It really ended my depression.

[tom67inMA in reply to Magnus1964]

Exactly! A friend put me in touch with his running coach, who has been battling stage 4 for almost 5 years and he's still running marathons, ironman triathlons, etc. First thing the guy says to me: "this is not a death sentence".

Hoping to pay that support forward.

[Fairwind]

I like Dr. #2's plan better than #1.....In my opiion, the side-effects of the chemo (Dosetaxel) were not worth the modest improvement in cancer suppression..Depending on where you live, maybe you can get into the NIH "Vision" trial which can provide the latest form of radiation treatment aimed specifically at prostate cancer cells.. It's worth investigating..

[whatsinaname in reply to Fairwind]

I am biased against chemo (docetaxel) as it did nothing good for me.

I also suggested Lu-177 ahead of other treatments. The quacks in the US might not allow it but the quacks in India would allow Lu-177 so long as one is PSMA avid.

[Cheerr in reply to whatsinaname]

Hi whatsinaname,

Can one consider nuclide medications like Lu-177 before Chemo or Zytiga ?

I only assumed one would go with Lu-177 IF Chemo / Zytiga fail. Would like to know more.

[GP24 in reply to Cheerr]

Some doctors believe it works better before Chemo, not before Zytiga though:

jnm.snmjournals.org/content...

[whatsinaname in reply to Cheerr]

I think GP24 below has given you the right answer. However, I think if your father is PSMA avid, then Lu-177 should be given preference even to Abiraterone. Just my opinion, though. Also, consider doing what I am right now, that is, taking Abiraterone along with Lu-177. There is a greater than reasonable possibility of them being synergistic. All the best.

[Cheerr in reply to Fairwind]

Hi Fairwind,

Did you have major side effects that continue to bother up till now? I am actually worried about the same, Imagine having to go through the Chemo and bear everything only to know it barely made a difference.

[whatsinaname in reply to Cheerr]

This happened to me. I spent approx INR 500,000/- on 6 cycles of Docetaxel and got absolutely no benefit. Luckily for me, the side effects were minimal (except for my hair falling....which has also fortunately grown back).

[Tall_Allen]

I think your first doctor is spot on and your second doctor is clueless. Here's the scoop:

pcnrv.blogspot.com/2017/06/...

[whatsinaname]

If your father is PSMA avid, then consider doing the Lu-177 treatment.

Whether or not he is PSMA avid can be determined through a PSMA PET-CT scan.

[j-o-h-n]

Greeting Cheerr... I see you're in India.... Hopefully he's being treated at a good Medical Institution. You have come to the right place for Help and Information.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/05/2019 6:10 PM DST

[Cheerr in reply to j-o-h-n]

Hi John

I feel blessed to have found this forum in such a heartbreaking time of my life. It has been really helpful in several ways so far.

Best,

Cheer

[Hidden]

I too was 53 just four years ago .I was stage#4 gl.4+4and t-4 ..I’ve done Imrt and adt only . If I were he ,I’d choose the most aggressive treatment advised. With luck he can push it back and live for many years happily . Sorry that you at here. It speaks well that you are his advocate .. he will be diminished and suffer some but it’s possible to live with APC for decades .. Our fine fellow Magnus has done so for 27 years . Welcome ...🌵

[Cheerr in reply to Hidden]

Hi Lulu700,

Thanks for the encouraging words. I feel blessed to have found this forum.

I am happy to read that you’re doing well now with undetectable PSA. Wishing you goodluck for it to remain the same

[Hidden in reply to Cheerr]

Thank Cheerr, we do the best we can .. Take care