To Begin with ADT or Not?: Recently... - Advanced Prostate...

Advanced Prostate Cancer

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To Begin with ADT or Not?

OmTatSat1 profile image

Recently diagnosed with aggressive prostate cancer and metastasis in lymph nodes and cervical spine.

No pain just urinary issues.

ÁDT prescribed to begin immediately as apparently no other alternatives...

ARE THERE REALLY NO OTHER ALTERNATIVES?

AM NOT LOOKING FORWARD TO ALL THE SIDE EFFECTS,

Any suggestions, experiences etc?

Thank you!

O

47 Replies

There are always alternatives... Their results look pretty GRAVE compared to the ADT side effects.

Only if you want to live 5 years.

You should get your prostate radiated:

esmo.org/newsroom/press-off...

As you have bone metastases you have to start with ADT. However, if you take 150 mg Bicalutamide + 10 mg Tamoxifen as ADT you will have very few side effects. This may be not as effective as Lupron but you will have a better quality of life.

sciencedirect.com/science/a...

If your doctor convinces you to take Lupron, you should add Apalutamide.

OmTatSat...you are saying you have "aggressive" prostate cancer....if that is true..then ..yes..you need ADT.No One can give any meaningful suggestion until you provide details about what makes you say...that your cancer is "aggressive." How did you determine that it is "aggressive". ?

ADT is definitely the way to go at this point. As Shooter1 wrote there are always alternatives albeit not terribly attractive. But if you want to explore them being on ADT should get your cancer under control so you can explore them thoroughly without feeling the pressure that every day you don't make some kind of decision your cancer may be continually growing, causing you to make a rash decision.

The side effects are different for everyone. I know the list is as long as your arm but you won't get them all. For me they are hot flashes, weight gain, and mild fatigue. Not pleasant but I can live with them. They are certainly better than the alternative.

You also want to ask your dr about genetic testing (both germline and somatic). There are therapies that can be effective based on those tests, but hormone therapy is in your future.

We have all been down this road, so we can speak with some experience, but you should probably get a second opinion from someone who specializes in prostate cancer oncology as soon as possible. If you are otherwise in good health, the consensus seems to be that you should hit the cancer as hard and fast as you can while you are still strong. This is generally a combination of ADT (usually Lupron), abiraterone (Zytiga), and chemotherapy (docetaxel). The side effects are manageable for most people, and your goal now should be to get the cancer under control as quickly as possible. The aggressiveness of prostate cancer is unique to each individual as is the response to the therapies I listed.

Only after you see how you do on these therapies, can you engage in meaningful quality of life considerations. Good luck and always keep a positive outlook.

Lupron, chemo, zytiga and xgeva all at the same time. Just a suggestion. The side effects of cancer is having side effects.

DarkEnergy profile image
DarkEnergy in reply to monte1111

Agree, combinational treatments against cancer is effective. I've done Lupron, Zytiga, Taxotere (chemo) and Zometa (bone health) all currently, and our own immune system fighting as well.

Cancer has been evolving and been around for a long time, our fighting chance is the new treatments. Although, chemo is its menace, it still lurks around....

Lupron/erleada....

The side effects are well documented and the I think most men will do okay and that includes you.

What Dr's can't prepare you for are bad jokes that permeate this site...they make ADT SEs trivial.

I was diagnosed with Gleason 8 PC in Feb 2021. PSA 140, mets in pelvic lymph nodes and small mets in pelvic bones.

Im a fit 54 year old. I kitesurf, surf, Wing Foil, Ski, Snowboard, run, lift weights etc etc. I could not think of anything worse then going on ADT's. The side effects (weight gain, muscle loss, lethargy, ED etc) were too much to contemplate.

Im on my 4th month of Eligard now and doing very well. No weight gain. No muscle loss. I still have a functioning penis. Brief hot flashes sometimes. I exercise about 70+ minutes a day. Mainly weights and a little cardio. Did a 9km trail run with some fit 30 somethings the other day and was fine.

I think that once you get over the shock of the DX, you have to manage your mental state. You have to learn to be proactive and not flounder in a victim mentality. You can choose to live as well as possible. Or not. Exercise harder than you ever have. Eat better than you ever have.

ADT is the first step in taking control of your health. It will buy you time. Time to evaluate and plan.

Next week I start a course of Docetaxel. That will test me. I plan to go snowboarding and skiing during the treatment (lockdown permitting. Im in Sydney Australia). I will definitely continue lifting weights and running even if I have to peel my withered body off the floor.

Good luck in your decision making.

Im off to do 30 pull ups and light run. I hope you do also.

GoBucks profile image
GoBucks in reply to jac_j_sp

You sound like a slacker. 🤪

Survivor1965 profile image
Survivor1965 in reply to GoBucks

Right, just another one of those overachievers 😜

Canoehead profile image
Canoehead in reply to jac_j_sp

Docetaxel infusions come at three week intervals. As impressed as I am with your fitness, and your effort to get there, you may consider lying a little low the first week after each infusion. Weeks two and three are no problem.

I’m looking forward to visiting Sydney next January.

jac_j_sp profile image
jac_j_sp in reply to Canoehead

Yes, perhaps it wishful thinking. I was considering doing 2 weekly infusions to minimise side effects but was advised by the oncologist "that's just for old/sick people" and I should be fine. He suggests that the first few days after infusion should be ok, then experience side effects for a few days then slowly recover. As the people here suggest, everyone is different.

It will certainly be an interesting and challenging few months.

You will love Sydney and other parts of Australia.

London441 profile image
London441 in reply to jac_j_sp

From one athlete to another I would have to disagree about ‘lying low’ on chemo…or anything else for that matter. maintain your fitness habits!

Be safe and Listen to your body obviously, just not your mind if it starts telling you you’re too tired.

I worked out throughout chemo while on Lupron and Zytiga as well. Some days it was hard to get started, but I always felt 200% better afterward. I’m not telling you anything.

jac_j_sp profile image
jac_j_sp in reply to London441

5 star attitude

Haniff profile image
Haniff in reply to jac_j_sp

My, my mate. Well done, so proud of you being so positive and able to exercise hard while on treatment. Keep up the great workout routines but brother do take periodic rests to heal ❤️ too.

The way I see it Bro you’re gonna ace the chemo. My very best to you 👍

Haniff

jac_j_sp profile image
jac_j_sp in reply to Haniff

Thank you everyone for positive feedback. Its makes me very happy.

Im realistic enough to know there will be hard times ahead but am determined to use the years I have left wisely. Yesterday I went skateboarding with the kids for a few kilometers (as its lockdown and home school). You cant buy that 😊.

Haniff profile image
Haniff in reply to jac_j_sp

👍👍👍❤️

Standard Of Care (SOC), means following your "teams" advice. Doesn't mean you can't educate yourself about YOUR disease and treatment choices. In some cases there are choices and in some only SOC has proven successful in extending your life. Lots of really bad side effects. Learn here what they will likely be and how to deal with them.At my Dx 3yrs ago I was only given one treatment option or call hospice. Note that was 3yrs ago and I'm writing this reply.

You can fight and delay the final result for you like many of us have done. Keep active here and in any local PCa group.

2Dee

I was prescribed ADT tablets, took them for a week and after experiencing the side effects decided against it. I read Chris Woollam's book "Oestrogen - The Killer In Our Midst". (Mr Woollams is an Oxford University trained biochemist) I think I made a wise decision. Now 70 years old, I figure my testosterone is in decline without taking tablets. Also I read somewhere that low testosterone was the cause of aggressive prostate cancer. There is just so much conflicting information out there, it's difficult to know what to believe - I figure we are all going to kick the bucket one day. I prefer quality of life as opposed to length of life.

MateoBeach profile image
MateoBeach in reply to Masirah

Good luck to you. But basing APC cancer decisions on a biochemist’s book and not a top urologic oncologist cannot be considered “wise”.

Masirah profile image
Masirah in reply to MateoBeach

My oncologist hasn't objected to my decision. She says without treatment I could live at least another 10 years, maybe longer. The urologist disagrees. That said I have read a research paper from an Israeli Professor who says that ADT can cause heart attacks and strokes. He advised against using it.

I've been on Lupron for 32 months. Loss of libido is the major side effect for me. However, I do worry about long term effects in bones, muscles, heart, etc.

tallguy2 profile image
tallguy2 in reply to dhccpa

You should be getting shots of Xgeva every 3 months to help protect your bones. Exercise is your best best for maintaining muscle strength.

dhccpa profile image
dhccpa in reply to tallguy2

I do get them. I started in Jan 2020, 14 months after beginning ADT. A bone scan in Sept 2020 was normal.

tallguy2 profile image
tallguy2 in reply to dhccpa

Good news!

You need the ADT. The side effects should not scare you unless you do not exercise.

But not exercising should scare you anyway so there’s that.

I'm at a loss...

My neighbor got a shiny new Porsche!

And I'm wondering why I didn't...?

How can this be!

I mean, shouldn't we all have the same things, the same experiences?

What gives...?

It's funny... You proclaim that you don't want the side effects! So I have to ask, WHAT SIDE EFFECTS?

Have you had Lupron administered before and experienced adverse side effects? If so, then please forgive me! But honestly, the INTERNET has an effect itself in regard to researching medical information. And the most prominent effect is that those who have favorable experiences, don't usually come online gushing about how well they're doing. This leaves the field open for what...? Well you guessed it, the opposite.

Are there negative effects experienced by many patients? Yes, of course! But "ALL" patients, and all patients the same way? Absolutely NOT.

I'm one who's been lucky and really the main side effect I have experienced from ADT is fatigue! Lose of libido I can probably attribute to a general effect of everything else that's gone on leaving sex as an afterthought. But that's it... I reserve the ability to change that as time goes on, but so far, with a short course (6 months) during RT salvage therapy, and now with Stage IV, 10 months and counting on ADT, while going through 2 surgeries and chemo as well... I'm good! With the switch to Orgovyx, I'm not even having those 30 second heat flashes I used to get maybe once or twice a week. Anyways...

I switched to the pill form, ie, Orgovyx and as a suggestion I would recommend this if your fear of ADT is so high. If negative side effects are experienced, you can stop taking the pills after discussion with your MO and switch to something else. But as noted, the biggest side effect from NOT using any form of ADT would be the ultimate. So keep in mind that Mortality and Morbidity are two separate things, yes, but not always mutually exclusive! With advanced PCa, they go hand in hand and sometimes, with inverse proportions in regard to tolerating side effects!

Best Regards

Boywonder56 profile image
Boywonder56 in reply to Cooolone

Cool response..

It seems that the take home messages are: 1) given the alternative, some form of ADT is warranted; 2) the potential side effects of Lupron are well documented and the list is long; 3) there are individual differences in how one reacts to it. Some men seem to be quite lucky and the impact of low/no T is bothersome but not awful; I'm envious Other men, me, for example, had a horrible reaction to the med (name the side effect and I had it). The only thing that seemed to help me was exercise (and I'm no gym rat either); I hired a trainer in order to get the max benefit from the exercise. I'm not sure how much the exercise actually helped BUT it did give me a sense of control - I was doing SOMETHING to fight the beast.

Might I suggest that you read "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones"? Describes what ADT does and provides suggestions for dealing with the side effects.

Good luck to you. You'll find a lot of empathic support and suggestions here.

10 yrs with the monster, Gleason 9 4+5. WITH ADT and great care from my docs I have beaten 2 life expectancy’s. 2 reasons it’s easier to tolerate life on ADT-

1 and 2 below

My Granddaughter
Haniff profile image
Haniff in reply to Survivor1965

❤️👍🎉

Hi Just had similar Diagnosis G9 - PSA 41 - Mets spine + / 61 yrs - am on ADT as initially Prostate cancer appears to feed on testosterone - I will have big bag of cancer in Prostate irradiated by beam therapy and I start on another treatment shortly - will publish my Testosterone and PSA change here shortly - Surgeon gave me 5 years - but as the guys said here and I have witnessed - some guys do 18 years some 5 years and one unlucky man did 3 months - I guess we are all different - My hospital in South of england has very good oncology department apparently. Hope this helps ? kindest Raoul

Svagatam maha prakasha. Om 🙏

It's always your choice on how and when you start medication including ADT. You may want to think about this more like being diagnosed with diabetes or COPD or MS. For the most part, once you start treatment you'll be on it the rest of your life. You may want to take a few weeks and think about things - do some research. End of life with any cancer is not pretty but you need to determine what your quality of life (QoL) means to you. The side effects are what you make of them, the mental toll of knowing you have cancer is high. Sending positive thoughts on choosing the right path for you. FYI - you can try ADT and if the SE are too great, you can stop and try something else. Choose an oncologist who will work with you on figuring out your ideal path.

You are almost exactly where I was in January. I started taking a 3-Drug ADT regimen of Firmagon, Abiraterone and Prednisone, OmTatSat1

I had a PSA of 160. My PSA is now around 5.0.

Any symptoms related to the prostate tumor (including pelvic, lower back and seminal vesicle pain) have subsided substantially; except for the total bladder/urinary blockage, which may be attributed to a stricture from a prior urinary tract procedure.

No pain meds required. Taking an anticholinergic (Trospium) for bladder spasms.

A TURP will scheduled shortly, which is anticipated to take care of that.

Blessings on your therapy decision-making process.

Verify if you feel the need to, but trust your Oncologist.

I forgot to mention the hot flashes and the cold sweats.

My wife laughs at me. Something about payback. :0)

Perhaps my little story here will help. I had positive margins after RP, so was prescribed RT and ADT, with the hope of a cure. Of course, RT **without** the ADT could possibly have cured me as well, and thus the SEs of the ADT bore down on me harder (psychologically) than they would have had I been metastatic. If someone had told me that I was in your situation, i.e., one in which I would almost definitely die of PCa in the next few years without ADT, I think I would have no little issue with the SEs.

hi OmTatSat1 ... i was really reluctant to do ADT because i was fearful of all the potential side-effects ... all i am blest with is occasional hot flashes;which are very tolerable ... it is super important that you also do all that you can to minimize potential side-effects ... you may also want to check-out these websites ... drgeo.com ... and ... envita.com ... best wishes ... Nous :)

I hope I am not too blunt with this. If you have been diagnosed with metastatic prostate cancer then your life has changed. Millions of people around the world are impacted by life altering events every year. You can lament about the life you had before this event or you can adapt and carry on. There is some good advice above about how to mitigate the side effects of ADT. I've been on it for three years and, while I don't like the side effects, I have come to appreciate my new lifestyle and embrace it. Life altering events like this can help to focus your mind on the things that are really important in life and the things that aren't so important.

Welcome to the group. Feel free to express your thoughts and feelings. The six months after diagnosis can be a confusing and emotional time. We have all been through it and can understand what you are going through.

'Kinder and gentler' treatments for metastatic cancer are wishful thinking.

My experience with 5 years ADT. Hot flashes, bone and muscle loss( could reduce if stay on top of it from beginning with Alkaline diet, regular strength training, and supplements) , loss of libido, foot pain from 6mo shot but not from 3mo shot. Added second Gen ADT when dx with mets to bone. Would I do it again? Yes; but, would pay more attention to things that protect bone and muscle mass. If I hadn't done this I would be dead by now... Stage 4 mCRPC , BRCA+, Bone mets. It bought me time to learn of People like Mcleland amd Joe Tippens and what he did to beat stage 4 small cell lung cancer. You can read his story at mycancerstory.rocks. Jane McLelland publhished a book "How to starve cancer without starving yourself. Doing some or all of these the things these people beat their cancer with may not cure me, but it has greatly reduced bone pain and the last 5 scans have come back "stable." Good news by all acccouts.

Ok here is my two cents similiar to others. This group has been a godsend to me and helps me not to feel alone. I understand your concern about the ADT. I was diagnosed in March 2021 with Gleason 9 (4+5) with one suspect node and intraductal pathology. Despite my concerns I started ADT with Abiraterone (Zytiga) 10 weeks ago. Biggest SE's for me are hotflashes, no libido, and in the last couple of weeks feeling more emotional. All SEs are tolerable and I am glad I started it. PSA of 10.15 went to 0.7 in the first month and down to 0.35 second month. I get HDR Brachytherapy next Monday recover for a month and start 5 weeks of external beam radiation. This is the decision I decided was best for me. I found once I made my decision a weight was lifted from me. Yes having prostate cancer sucks, but as other have stated I do my best to choose to live with cancer vs dying from cancer. I wish you well as you make your decision.

With Gleason 9 I had no alternative to starting ADT last November. Only SE noticed is zero sex drive. Manage to keep my strength with thrice weekly gym visits. Switched to transdermal estrogen which probably has similar efficacy to conventional ADT, but without the side effects of lowered estrogen (bone loss etc).

Radiation is an option.

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