Decision: Lupron/Xtandi vs Natural - Advanced Prostate...

Advanced Prostate Cancer

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Decision: Lupron/Xtandi vs Natural

JThos profile image

I'm a 73 male divorced/no kids just diagnosed w/stage 4 PC. Has spread to Lymph Nodes in Groin, but not to bones per scan. PSA 349, Gleason 3+3. Onc prescribes Lupron and Xtandi. (Surgery or radiation were not suggested.) Lupron side effects scare me, & it seems once you're on the chem train, you can't get off.

I'm tempted to not take the drugs, just live as healthy as possible & risk a shorter but hopefully higher QOL.

I know this is a personal decision, but.....thoughts/input?

Thanks!

86 Replies

Speaking from my own experience, untreated prostate cancer is hell. There was absolutely zero quality of life for me when I was first diagnosed. Although there are side effects from treatment, my over-all quality of life improved dramatically with treatment.

Treatment decisions are personal and everyone has the right to get treatment or to not get treatment. But I do think we need to make informed decisions and have realistic expectations regarding our choices. If you have stage 4 prostate cancer, I would not expect to have better quality of life without treatment. I would expect a shorter life with worse quality of life.

Kaliber profile image
Kaliber in reply to gregg57

Yes …well said. 👏👏👏❤️❤️❤️

JThos profile image
JThos in reply to gregg57

I definitely want to make an informed decision and have realistic expectations. Thank you Gregg for your honest input and reality check re:results from non-treatment.

"...risk a shorter but hopefully higher QOL." Unfortunately, it doesn't work the way you imagine. QOL deteriorates rapidly as metastases increase. You will have a shorter survival and a much worse QOL.

If you only have those metastases in your groin lymph nodes, radiation to your prostate can extend survival. In addition to ADT, you should also have either docetaxel or Zytiga (or both). That treatment increases QOL.

Kaliber profile image
Kaliber in reply to Tall_Allen

Yes ….well said. 👏👏👏❤️❤️❤️

JThos profile image
JThos in reply to Tall_Allen

My view of non-treatment results may have been skewed by articles/videos suggesting "ways to starve cancer". Thanks TA for reality check, and for suggestions of additional procedures/drugs which I'll discuss w/my Onc.

Tall_Allen profile image
Tall_Allen in reply to JThos

Lots of disinformation on the Internet. There is no way to "starve" prostate cancer. It is a voracious feeder - if you lower your intake of one nutrient (fats, carbs, or proteins), it will simply switch to another. In fact, because it replicates so rapidly, it will steal nutrients from healthy cells. The goal is to slow down its rate of replication - that's what chemo and hormonal therapies do.

Hailwood profile image
Hailwood in reply to Tall_Allen

I agree totally with TA. I have worked with an individual and seen a son in law who negated science upon diagnosis of sarcoma preferring to utilise “natural” therapy, who both ironically only received relief from science based painkillers from the pain of the random metastases throughout their bodies. It is always a choice but there is a time when nature is not the only, or best option for care. Without the science that people seem to mistrust, even the diagnosis of our rotten disease would have gone undiscovered, just being unable to piss, then weakening, not eating and then dying painfully with only the help of whichever hick health guru existed in the town or village

JThos profile image
JThos in reply to Hailwood

Thank you Hailwood for your input & experience w/those using "natural therapy"

Lulu700 profile image
Lulu700 in reply to JThos

I’ve used natural homeopathic methods along with the conventional poisons offered to us .

JThos profile image
JThos in reply to Lulu700

What do you mean "conventional poisons"?

Lulu700 profile image
Lulu700 in reply to JThos

Adt Chemo radiation therapy surgery .

Gregg57 and Tall-Allen summed it up well.I will bite my tongue for now instead of giving you my gloomy details of prostate cancer untreated from personal experience.

JThos profile image
JThos in reply to CAMPSOUPS

Thanks for taking the time to respond. I'm going thru the education process, so I welcome all input, good or bad.

dac500 WROTE --- " One point has been missed by the other replies. You have mentioned Gleason 3 + 3 with spread to groin lymph nodes. How all this diagnosis happened? If you had a biopsy, it probably missed some higher grade cancers... "

EXACTLY my thoughts with a 3+3 diagnosis?????

"EXACTLY my thoughts with a 3+3 diagnosis?????"

I had the same thought. PSA is high too, close to mine at diagnosis.

Whenever I see 3+3 or 3+4 and treatment has been decided on, I wonder if there was a 2nd opinion sought and if the biopsy results were from the far inferior TRUS method.

The inital Gleason score at biopsy can and does change too. I know people who started off with 3+3 and went up to a higher Gleason score later.

Not that it mattered much but mine went from 9 to 10. I could officially declare I was at the TOP!!!

“Top of the hill mom”! 🏋🏽‍♂️🕺

thanks for your input....I also don't understand the #'s. Sequence of events: PSA of 300 from Primary Care exam, sent to Urologist who did rectal exam (no hard lumps discovered) & prostate biopsy. From what I can tell from med report, 15 samples taken from prostate, but only 1 showed "prostatic Adenocarcinoma, w/Gleason Score of 3+3=6, Grade Group 1. Then bone scan (negative cancer results) and CT scan revealing swollen lymph nodes in groin. CT guided biopsy of LN's diagnosed with "Prostatic adenocarcinoma consistent with metastasis". Then sent to Oncologists who wants to treat w/Lupron & Xtania (tho she said I could hold on the Xtania for now).

JThos wrote --- " ...From what I can tell from med report, 15 samples taken from prostate, but only 1 showed "prostatic Adenocarcinoma, w/Gleason Score of 3+3=6, Grade Group 1... "

Just wondering if the 15 samples from a TRUS biopsy that might have missed a higher PCa that the TRUS can not reach???

treedown profile image
treedown in reply to JThos

Your PSA was higher than mine and Gleason lower but otherwise similar. I was offered Radiation with curative intent (unsure if there was value in it yet) so surprised you weren't offered any radiation. Maybe down the line a little. I did mine 3 months after starting Lupron. Maybe it was not offered based on your response when they offered ADT ? Anyway, others more knowledgeable than me may know why you weren't offered it but I have no doubt they expect more disease exists than is showing on the scans and biopsy your received already. I was am in that boat s well.

I'm thinking the boat is more like a SUPER TANKER and not a 🚣‍♂️

Karmaji profile image
Karmaji in reply to JThos

When house is on fire , extinguish the fire first which may stay smoky for long but meanwhile taking care of house.

Listen to TA.....As for me I had no reaction to ADT and RT...since 2 years....

Actually I have better quality of life now due to my 6 points integrative therapy in order to save the house...myself not only the APC....

Chemical therapy, nutrition, intermittent fast, exercise, some supplements, Mindfulness

It is not one fit all but an integrative personal journey and learn to enjoy it with QOL

I am on Firmagon, not Lupron, but the low T effects have not bothered me at all in the first few months (Wellbutrin may be helping with that). I was very worried about potential effects on mood and energy levels. Of course, the SEs may catch up with me over the longer term.

You might hold off on the Xtandi at first, to see how tolerable and effective ADT alone is.

Rather than standard ADT, you might also consider high-dose estrogen monotherapy or bicalutamide (antiandrogen) monotherapy. But I failed both of those attempts at a "kinder, gentler" hormonal therapy. Turns out, for me, that the good stuff is being kind and gentle, and so far appear to be doing the job. (Again, once bone loss and muscle loss and weight gain, etc. do appear, I may change my tune.)

There really is nothing out there proven to be as effective at extending life as ADT has been, and earlier is better. If SEs prove to be intolerable, you can always quit. But you are not going to know how YOU tolerate it until YOU try it. Mileage varies greatly from individual to individual.

EDIT: I will add that historically speaking, ADT was used to treat SYMPTOMS of the PC, not so much to extend life. So it is not unheard of to delay treatment until the PC becomes symptomatic or at least obviously (via scan) metastatic, although that approach is very rare in the US (but a bit less rare in some places).

You can use natural supplements but use them as complimentary to medical treatments. I don't know why radiation was not offered. Many oncologists use an ADT drug, i.e. Lupron or Casodex to put the cancer in remission, then use radiation.

If you are worried about side effect, you could start with a milder ADT drug like Casodex alone, then go to radiation.

You have a low Gleason score but a high PSA. At your age I would say your chances of dying of prostate cancer are slim.

JThos profile image
JThos in reply to Magnus1964

Appreciate your input

Don’t be tempted. Lupron / xtandi can push pc down . I did Lupron and tak-700 plus imrt with a much worse pc than yours. Adt although a draining event cuts the cancer down . That’s why they’re still using Lupron after 40 yrs or more. These are the first line of defense. Your doc thinks maybe adt with be enough. Better go for it. Your best chance to put this thing to sleep is right now. Please don’t not be treated . If you refuse ? things can go bad rather quickly and painfully end stage is nothing nice. Nobody wants to go there. I asked my specialist over six years ago” what if I refuse treatments”? He told me” if you do that you will die in less than two years a brutally painful death with incredible pelvic pain like a women in labor. !”

Lulu700 profile image
Lulu700 in reply to Lulu700

I told him sign me up ! 5 yrs clear of pc right now. A miracle from where I started out with APC .

JThos profile image
JThos in reply to Lulu700

Thanks for input Lulu!

Lulu700 profile image
Lulu700 in reply to JThos

You want to live past this dx Sir ! Save yourself anyway that you see fit . It’s your life . Good luck .

Cmathews1962 profile image
Cmathews1962 in reply to Lulu700

Did you have any metastasis?

JThos profile image
JThos in reply to Cmathews1962

After CT scan which showed swollen Lymph Nodes in Groin area, had "Pelvic Lymph Node Needle Biopsy" indicating "Prostatic adenocarcinoma consistent with metastasis". Bone scan revealed "no osteoblastic metastatic disease". I wonder how long it takes for it to spread from Lymph Nodes to bones or other organs.

CAMPSOUPS profile image
CAMPSOUPS in reply to JThos

I guess I am going to come across sounding rude or blunt and I might be misinterpreting your question in your reply to Cmathews1962 when you say “I wonder how long it takes to spread to lymph nodes or bones or other organs “. But here goes:

You can study/research that when you are under treatment. Don’t even think you can enjoy life while waiting for your cancer to spread further. And yours has already spread and might be more aggressive than your biopsy results indicate.

You need to get on top of this now. Get your head right and get treatment so you can prolong and enjoy the rest of your life.

Again, untreated is a miserable existence. Far from normal life. The effects of spread are exponential as well not only affecting the body but the mind as well. I was not living a normal “natural” life when cancer was raging thru my body.

JThos profile image
JThos in reply to CAMPSOUPS

You're not being rude; bluntness is appreciated. You are echoing other replies, that non-treatment (i.e., following a "natural path" for higher QOL) is neither realistic nor a smart decision. I appreciate your & other's input that answer my original question.

One point has been missed by the other replies. You have mentioned Gleason 3 + 3 with spread to groin lymph nodes. How all this diagnosis happened? If you had a biopsy, it probably missed some higher grade cancers. Treatments have side effects but may not be as bad you think.

JThos profile image
JThos in reply to dac500

Sequence of events: PSA of 300 from Primary Care exam, sent to Urologist who did rectal exam (no hard lumps discovered) & prostate biopsy. From what I can tell from med report, 15 samples taken from prostate, but only 1 showed "prostatic Adenocarcinoma, w/Gleason Score of 3+3=6, Grade Group 1. Then bone scan (negative cancer results) and CT scan revealing swollen lymph nodes in groin. CT guided biopsy of LN's diagnosed with "Prostatic adenocarcinoma consistent with metastasis". Then sent to Oncologists who wants to treat w/Lupron & Xtania (tho she said I could hold on the Xtania for now).

Tall_Allen profile image
Tall_Allen in reply to JThos

Any cores from the anterior?

I'm thinking that following a DRE it's likely the procedure used was a 15 core TRUS and so --- NOPE.

JThos profile image
JThos in reply to Tall_Allen

No. Had15 needle biopsy, w/14 benign. Only the Left Lateral Apex had "Prostatic Adenocarcinoma".

Tall_Allen profile image
Tall_Allen in reply to JThos

Probably missed the significant PCa.

Stage 4, lupron for almost 4 years, hot flashes but better than death, feel good, work part time. Gained weight but was skinny before, like to eat due to the steroids. Battle it or it will kill you, turning 70 Wednesday and plan many more years. On arbitrone and is keeping the PSA below 1 with no major side effects except some tiredness especially when my mind says I can do it but the body says no. Take the medicine to live a longer happier life.

JThos profile image
JThos in reply to Muffin2019

Thanks for sharing your experience/results...all the Best!

With gleason 3+3, at age 73, just watching it carefully makes sense. Talk to the doctor about active surveillance. Though a psa over 300 with gleason 3+3 seems a bit contradictory

dac500 profile image
dac500 in reply to Stevecavill

If the cancer is outside the prostate, watching carefully may not be enough.

Stevecavill profile image
Stevecavill in reply to dac500

Yes I agree, but the “outside the prostate” and gleason 3+3 don’t seem to add up.

dac500 profile image
dac500 in reply to Stevecavill

That's why I said the biopsy missed high grade cancer. By the way, I was diagnosed with Gleason 3 + 3 cancer ten years ago and was treated with brachytherapy. Now, I am battling metastatic cancer in multiple pelvic and abdominal lymph nodes.

JThos profile image
JThos in reply to dac500

Thanks for info. I added in my profile & other responses the sequence of events leading to PC diagnosis. I asked for & got my med records to verify #'s.

dac500 profile image
dac500 in reply to JThos

Very unusual case. Only 1 of the 15 biopsy cores showing Gleason 3 + 3. Yet you had a PSA of 350. My guess is most of the PSA is coming from the cancer in the groin lymph node. If possible you should get a PET/CT scan to get a more complete picture of your cancer.

I wish you best of luck with your treatment. Life with hormone has its ups and downs. But the most important thing is get your cancer under control.

Lulu700 profile image
Lulu700 in reply to dac500

Agree .

JThos profile image
JThos in reply to Lulu700

I had a CT and a bone scan. Bone scan negative. CT indicated swollen Lymph Nodes in Pelvic area, followed by Pelvic Biopsy showing positive for metastasis. Any thoughts as to how long it takes to spread from LNs to other areas?

It's your decision but I would listen to the experts. I am on ADT and find it bearable.

JThos profile image
JThos in reply to rosatt1

Good to know...thanks for sharing!

You cannot take your eye off the ball. Never think cancer is going to leave you alone just after one or two fights. Our backgrounds with the disease are similar, I say do not give cancer a chance to sneak back in. Good luck.

JThos profile image
JThos in reply to TwilightZone

Thanks for sharing - Best to you also!

I had Lupron and Xanti after radiation. Got totally exhausted and fall down dizzy with Xanti full dose they cut it to 3 then 2. All with undetectable PSA. I decided to stop it. And still undetectable PSA and now I feel great. Brain fog is gone with just lupron. I also had Mets to lymph nodes.

JThos profile image
JThos in reply to Marshb52

Your results are encouraging - thanks for input. Onc did say I could start Lupron w/o Xtandi.

Lulu700 profile image
Lulu700 in reply to JThos

Please get on something brother ? You’re playing with fire and dont even know it .. 300 Psa deserves adt now amigo .

I am 79 and was on Lupron for 10 years. In the last year my choice was to have testices removed which took the need for Lupron shots which I found very difficult. I went on Xtandi to control the cancer and found the side effects of constiputation and insomnia which I have been able to control. I also had a penial implant which gave dependable relations with my wife and has improved our relationship. I had the best implant made by Boston Scientific. This solved the loss of penial length. For use you just pump it up. All this took about 6 months to do and my life is it was back when I was 60.

JThos profile image
JThos in reply to jbskiatook

Thanks for sharing....like "my life is it was back when I was 60" - that's very encouraging after being on Lupron 10 yrs!

Lulu700 profile image
Lulu700 in reply to jbskiatook

Amazing story. Great for you sir!

Lulu700 profile image
Lulu700 in reply to jbskiatook

My onco made me wait 18 months on Lupron before he let me do the orch . 4 yrs no shots . Don’t miss the balls a lick . They always just got in the way ! 👍🏋🏽‍♂️

I am using a Rife machine in addition to short term ADT therapy. My PSA was over 5k. I will kill the ADT therapy next month after 4 months. Can't stand the hot flashes. Check out the FB group killing prostate cancer with frequency. Lots of good info.

I arrived at the urologist’s office with the same reservations as you. He immediately disabused me of the idea that side effects are worse than the disease. In fact, he said that Zytiga is a quality of life drug. I have to agree with him. In fact, I felt so good after a month or two of Lupron + Zytiga that I decided to have an orchiectomy and save myself the $5,000.00 a year expense of Lupron. Frankly the transition was seamless.

The side effects were unpleasant but manageable. Of these, the hot flushes are the worst. At their peak, I would often have to pause the TV to change my shirt because it was so wet. I am 78 years old and have known many menopausal,women including my first wife. None of them dripped the way I did. But that too shall pass.

I also developed gynacomastia and lost a lot of muscle mass but that and the hot flushes are trivial compared to what my urologist told me what was in store for me w/o Zytiga. Parenthetically I have noticed that my sense of rhythm and dance is greatly improved. Latin music immediately makes me move my feet.

Over the course of these treatments, I have developed paraesthesias on the balls of my feet and my skin rapidly developed senile purpura. I cannot say for sure that these are ADT related.

After about a year, My PSA doubling time indicated that Lupron alone was no,longer effective. That was when I went on Zytiga (generic from India). The benefits of Zytiga lasted less than year and urologist bailed out, saying he had done all he could. My new oncologist immediately put me on Bicalutamide and suggested Xtandi. I am now waiting for a shipment to arrive from India.

I am not eagerly awaiting the arrival of the Xtandi because as I understand it, the side effects are an order of magnitude worse than Zytiga, i n fact I long for the continued action of Zytiga, which my Urologo correctly identified it as a quality of life drug.

We know that the “kick the can down the road” testosterone manipulation approaches is, as one member of the group described it, analogous to,floating down the River upstream of the waterfall, so I am into all kinds of alternate trips. Recently I had a personal,prescription from Chris Woollams and was very impressed by him. If you want to proceed alternative activity that is parallel with SOC, I recommend contacting him.

Best of luck.

R

In th

Lulu700 profile image
Lulu700 in reply to Frigataflyer

Hahaha😂😂😂👏👍. My ritmo Latino has improved greatly ! This is the best thing that I’ve ever hard on this cite .I a in th same depleted boat brother but we must ekk out happiness daily ! Salud compadre ! 🏋🏽‍♂️🕺💃🏻

T

Hi, IMHO, hit the PCa (Prostate Cancer) with ADT- Lupron/Casodex or Abiraterone and chemo - Taxotere or Jevtana(Cabazitaxel)ADT will starve them and Chemo will kill them. Hit the PCa hard and fast whilst you're still young and side effects will be more tolerable than years later.

Offset the side effects of the ADT with cardio(esp weight bearing) and weight lifting.

Change diet to low simple carb, low fat, lean protein, lotta colors of fruits/veggies. Heart healthy is prostate healthy.💙

Take Vitamin D for immune health.

Cancer is like terrorism and you have to stay vigilant or something may sneak up and do harm( eg Boston Marathon bombing)

I had ADT in 01/2015 and 15 Taxotere chemos in 2015. #stageIVpca with Mets to L side ureter lymph nodes. GL 7 (4+3)and some GL8 in an 18 core blind biopsy.

PSA dropped from 840.2 to 0.7 in 2015. Had over a year of a Hormone Holiday off ADT. PSA nadir 0.1 in 2017. Then had to do Abiraterone and that and Xtandi both failed in 2020

6 Taxotere chemo rechallenge and PSA dropped to the lowest in 3 years to 2.2.

But, it jumped in a month from 2.6 to 3.6.

F'in terrorists hit again 😔

Have MO appt and a PET scan upcoming

Fight on y'all

Randy

JThos profile image
JThos in reply to dockam

Really appreciate the detailed nfo Randy..thanks so much for sharing. All the Best in upcoming appointments. Knock the F... out them terror'bastards

Lulu700 profile image
Lulu700 in reply to dockam

You be knowing shit Dr! Good day my man ! 🤙🏽

dockam profile image
dockam in reply to Lulu700

A lot of what I said has already been said on HU, such a wonderful resource for us. 👍💙

Lulu700 profile image
Lulu700 in reply to dockam

You speak from experience and knowledge . Always good! 🤙🏽🌴

I’m on Lupron and Erleada after RP and I work full time and while libido is gone, I’m healthy with no noted side effects despite my initial misconceptions and I have caring GP and MO and I couldn’t have been treated better. Choose what you want, but be prepared for untreated metastasizing cancer.

JThos profile image
JThos in reply to Hailwood

Sounds like you're in good hands...thanks o much for sharing your perspective/experience.

Lulu700 profile image
Lulu700 in reply to Hailwood

Great advice Hailwood!

I know it's easy to look at side effects of ADT and wonder whether it's worth it or not. But once the cancer becomes symptomatic it can really become a descent into hell. It was really bad for me and my doctor said I could still have lived quite a while with no treatments.

According to one oncologist I heard, most patients prefer to maximize QOL for as long as possible, then have a short, fast decline at the end vs. a long, and slow decline. This idea kept in mind when treatments are developed.

Going without treatment might start off OK, but then would more than likely lead to the long, slow decline path.

JThos profile image
JThos in reply to gregg57

Thanks Gregg - really appreciate your analysis/input. Given the alternative, also prefer the max QOL w/short fast decline.

Get another opinion.....see a different and a GOOD medical oncologist....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/12/2021 11:05 PM DST

FYI, I was in a somewhat similar situation when diagnosed in 2012. A Gleason 9 cancer with regional metastasis to the pelvic lymph nodes and bladder. I had radiation therapy and spent 27 months on ADT - Lupron and Casodex. (I also had kidney stents inserted for 8 months to deal with a urinary blockage from the bladder tumor.)

After 27 months my PSA was undetectable and my oncologist stopped the ADT meds. I have been off them ever since and my PSA has been in the 0.1 to 0.2 range. FYI, personally I found my quality of life good while on ADT. While I had a lot of side effects, they were all minor. I also exercised heavily while on ADT which I believe helped.

Hi JThos. Sorry to hear of your predicament. Lots of experience here as you have seen. True that the natural course leads naturally to a horrible and tragic early death. Better to buckle your armor and fight the beast and love for many more years. You are “de-novo metastatic” meaning metastatic from diagnosis. The best possible treatment at the start has now been demonstrated to be aggressive triple therapy. The PEACE-1 clinical trial demonstrated that combining Zytiga (or similar) with ADT (Lupron or similar) AND

a course of docetaxel chemo gives the highest overall survival results. Yes that is difficult. But the chemo would be over in just a few months. And the others could be adjusted so side effects and QOL are acceptable.

I suggest you have a discussion of this with a good urologic MO (not a urologist). And also consult a RO (radiation oncologist). Then you will be able to select your plan of attack.

Accept “Difficulty at the beginning “ for long term success as the I Ching advises.

DearJThos, now you’ve heard from the best of us . No treatment for#4 APC is a certain and painful death wish . Don’t go there . Get on board . No looking back . Ou days are limited now and that much more important too! Chose life . Live well .

Jump on board JT. Adt is you first hope to push pc away . I had no choice Sir . For me , it was certain death without adt and imrt . Six years of life when few thought that I d make it .. choose life! 💪☝️

JThos profile image
JThos in reply to Lulu700

Thank you Lulu!

My Gleason 3+4, very similar to your situation. I was diagnosed at 70 years of age on March 2 2020 w/stage 4 PC with Lymph Nodes infected in lower pelvic region. My oncologist put me on Lipton and Xtandi. My PSA was at 60.0 and in Oct 2020 my PSA had fallen to 0.01 and has stayed at that level for a year next month. The fatigue and the hot flashes were the more prevalent side effects but was able to overcome the fatigue by weightlifting and using my stationery bike for cardio on a daily basis. My urologist prescribed Megestrol AC Tab 20mg 1 tablet 2x a day which all but eliminated hot flashes. I have been working 48 hrs a week as a security officer at a Casino for the past 3 years and continue to do so. Without Lupron and Xtandi I doubt that that would be possible. My oncologist took me off the Xtandi a couple of months ago and am only taking a shot of Lupron every 3 months. My suggestion is to take the the advice of your oncologist, it worked for me.

I spent 18 months on ADT and used cannibis at night to help relax and sleep. Gabapentin sometimes works.

Like cannibis idea for relax/sleep aid if I can get med card since in a non-legalized state. Recommend any particular product/form? thanks.

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