Want to know how you feel with hormon... - Advanced Prostate...

Advanced Prostate Cancer

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Want to know how you feel with hormone therapy, and Brachy?

CarrotBoy profile image
27 Replies

I was told I am a 3+4. My doc wants me to do ADT (hormone therapy), and then do "seeds" (Brachytheraph) and I'm leary. Someone tell me how you feel with ADT - and also with the "seeds". Are you glad you did it? With great supplements (resveratrol, K-2, apple cider vinegar, colloidal silver, Alaskan blueberry, flax, a major vege diet and Jason Winters tea, etc), I lowered my PSA from 21 to 8.45 in five weeks. I don't know how low a PSA I can achieve by fresh eating and pill regimen, or how much hospital treatment I'll need - or if I should hold off to see what my homeopathy can do? My doc wants to know in a few days which procedure(s) I choose, or maybe even including removing the prostate, which I am against. I RESENT ever getting the 16 biopsies as it broke the "envelope" where it was contained.

Also, does anybody out there ever take ImmPower or MSM? I also read from a doctor' s book that bromelain and berberine are good at preventing tumor pathways. For other's information, I heard vitamin C, Co-Q 10, NAC and glutathione now betray you and encourage the cancer! Be aware! Many thanks! CarrotBoy in PA

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CarrotBoy
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ron_bucher profile image
ron_bucher

My biopsy was 3+4 in 2006, but the pathology on my RP was 4+3 (not uncommon for Gleason to be upgraded). In 2007 I had IMRT. In 2016-2017 I had more IMRT + Taxotere + Lupron. Lupron was the only treatment I stopped early - at 9 months into an 18 month plan.

For side effects on my mind and body, Lupron was the worst of all treatments. I'm a very active person (cycling and tennis), but at age 66 Lupron turned me into a couch potato. Like most guys, it put 20+ pounds of fat on my waist which is really difficult to shed. I had hot flashes all the time and most of the other classic side effects you read about online. My femur bone density dropped 5%.

Having said that, one person's experience may not translate to anyone else. I didn't see any mention of Vitamin D, which many doctors believe is a good idea. I take 5000 per day. My PSA has been undetectable since stopping Lupron and my Testosterone crawled very slowly back to normal range.

CarrotBoy profile image
CarrotBoy in reply to ron_bucher

Thank you Ron. Yes I take vitamin D3, but not often enough. I had not heard of Taxotere. How was taking that?

ron_bucher profile image
ron_bucher in reply to CarrotBoy

Taxotere is the main chemo treatment for prostate cancer when it has spread. Luckily I breezed through it well. I was in excellent shape going into it which helped enormously. My recurrences were not visible on scans, but rising PSA after RP indicates it still exists somewhere. Since my cancer has been aggressive from the start, I've been aggressive with treatments on each recurrence. I view it as a life long tug-a-war.

Tall_Allen profile image
Tall_Allen

PSA is not prostate cancer. It is likely that your PSA was elevated due to prostatitis, which is known to come and go. Perhaps some of the supplements had anti-inflammatory effects that reduced your prostatitis. That is certainly a good outcome, but it does nothing for your prostate cancer.

This "breaking of the envelope" is just your imagination. The prostate has what is known as a pseudo-capsule, which disappears at the apex. There is no danger in releasing cancer that has not evolved to the point of being able to live outside of the prostate. Spread via biopsy has been documented, but it is extremely rare. Biopsy spreading is more a danger for high grade tumors, but if the cancer has evolved to the point where it can live outside the prostate, it has also evolved to the point where it can migrate outside of the prostate on its own.

Having a GS 3+4 and a PSA of 8.5, assuming that no more than half your cores were positive, puts you in a category called "favorable intermediate risk." That means that SBRT or brachytherapy (without ADT or extra external beam radiation) are curative. They have about equal effectiveness to prostatectomy, but different side effects. Well-meaning friends and family, in their ignorance, often pressure the patient to "just cut it out," and that is certainly an option. But only you can decide what is right for you.

CarrotBoy profile image
CarrotBoy in reply to Tall_Allen

Hi Tall_Allen. I appreciate your message and found it to be encouraging and helpful. A bone scan a few weeks ago said it had not spread, a fear of mine. Thanks for your information.

timotur profile image
timotur

Life on Lupron is a big adjustment, you just have to accept you will be about 80% as strong, and will have some temporary muscle wasting. Search the many posts on here about ADT side effects. I would suggest High Dose Rate (HDR) Brachy mono-treatment similar to what HU member "ocman" has had, assuming your tumor is contained within the prostate. Have you had imaging to determine that?-- mpMRI or PSMA scans?

CarrotBoy profile image
CarrotBoy

A recent bone scan said my prostate cancer had not spread. My doc wants me to have hormonal therapy to shrink the prostate first, then do Brachy. I wish I could skip the hormonal therapy. Someone on here suggested I get SBRT (a stronger stereotactic radiation). Are you familiar with that?

timotur profile image
timotur in reply to CarrotBoy

SBRT is a good treatment at the best centers of excellence. TA can provide more insight since he had it with good results.

I would ask your Dr if you have any evidence of "extracapsular extensions" (EPE) from your MRI. If there is EPE, you need to investigate if it spread to the lymph nodes (LN's) through an advanced PET scan (e.g. PSMA). If +EPE and +LN, then you may consider radiation more strongly.

Ok. In 2003, I was a Gleason 7(4+3) and PSA 6.8 I opted for Brachytherapy after many hours of research. My RO set as a plan to following with 25 sessions of IMRT with a different RO. As my primary treatment, I would do it again. Cancer does not escape vis biopsy.

After the IRMT, I had monthly PSA as my level never really came down. At nine months PSA doubled and a month later was 32.4 with two mets to T3 and L2. I immediate took an injection of Lupron with Casodex. I was told that anyone could give me Lupron. I told the doc that I had one question. If you were in my shoes what would you do? He thought a moment and then said that he would find the best medical oncologist available that specialized only in prostate cancer; not any other cancer. Do you know one. Answer no.

The next week I saw my external radiation guy asked the sane question. Got the same answer, but he knew one and would call. By the time I got home the phone was ringing and I saw the medical oncologist the following day and spent 2 1/2 hours with him, the end result, I entered a six month chemotherapy plus hormone therapy trial. Started on July 5, 2004. Ny guy was a research medical oncologist professor at a leading school of medicine. In other words, he cane from academia and not community.

Most important, he came in one day and told me that it mattered not what my primary treatment was. It was already too late. Then he explained micro-metastasis.

Long story short, I was able to stop Lupron/Eligard in February 2010, I am still undetectable. I am most fortunate.

I told this story as there are no guarantees. What was a 92% success rate initially was a good shot. I feel in the 8%. I took no supplements as the research medical oncologist didn’t want them to screw up his research.

I wish you luck. Research. Ask questions and then don’t look back. If things go south, there are plenty of new treatments - a lot more than 16 years ago.

Gourd Dancer

CarrotBoy profile image
CarrotBoy in reply to

Thank you. Your message was helpful and encouraging to me. What do you thing was the main thing that turned you around, improvement. Did you have or dread hormone therapy (ADT)?

PunxPhil profile image
PunxPhil

Good job on the natural stuff. I’m fine with adt. Mild side effects. Made me emotional till I realized it was chemically driven. Definite libido reduction. But no dizziness nausea or hair loss.

CarrotBoy profile image
CarrotBoy in reply to PunxPhil

Hi PunxPhil. Sounds like you're in PA as well, yea. I thank you for your input, which was helpful! I assume there is no libido at all, or is there some? I'd rather hear it from someone rather that reading another article.

dadzone43 profile image
dadzone43

I cannot answer your question because I have not had either treatment. In this forum you will find a wide range of side effects and a wide range of responses to those side effects. Most men have endured them; some have stopped treatment. It is a choice based on both information and on fear.

For my part, the list of side effects was daunting and both my MO and RO were pushing pretty hard for "hormonal treatment." If they called it "castration" that would have been more truthful. They were dismissive of the side effects: "Oh a few lifestyle changes will handle those side effects." That was a lie as evidenced by the mountain of science showing that some of the side effects are not reversed by a few lifestyle changes and evidenced by the mountain of anecdotes in this and other forums.

I chose otherwise. Keep informing yourself and do not be pushed by fear or bullied by doctors into a decision that you will later regret. Ciao.

CarrotBoy profile image
CarrotBoy in reply to dadzone43

Hi dadzone43. Thank you for being truthful about ADT. It sounds as nasty as I anticipated. Is there something else that worked for you, or you recommend?

dadzone43 profile image
dadzone43 in reply to CarrotBoy

Well I have to say I was lucky. My urologist who diagnosed me said I was too old for surgery. I met the RO who said ADT+RT. Then I met the surgical oncologist who said that because I was healthy and did not have too much flab he could do RARP. After that my PSA went to non detectable. But the RO and MO argued for ADT + "salvage" RT. WHAT is it you are salvaging? Well the margins were not clean. It is Standard of Care. I said no. I respect these guys, but I also know that their only metric is to __extend survival__. That is the name of the game in the oncology world. So I asked, what do the studies show my improved survival statistically might be? I asked. Well the studies are not done yet. So, I asked (politely) "you are not really sure, are you?". "It is the Standard of Care.". " Must be based on something" I said. They pulled up the studies from the laptop. The average improved survival after radiation + two years ADT was six weeks. Six weeks! in exchange for muscle loss, bone loss, weight gain, heart damage, cholesterol rise, hot flashes, brain fog, memory loss, growing boobs and depression.

No thank you. I will continue to monitor my PSA and if it starts to rise I will reconsider.

CB that was my decision. You could make an equally valid decision in the opposite direction. I am 76; you may have a different age and certainly you have a different pathway.

The beauty is that this is not an emergency. It FEELS like an emergency and that every second those cancer cells are in my prostate I am at risk that they will pop out and kill me. That is the fear talking. The facts talking are that, yes, you must reach a decision but it does not have to be this hour, this day or even this week or month. You have time to figure out who you are and what you need.

CarrotBoy profile image
CarrotBoy in reply to dadzone43

Great message that makes sense! Greatly appreciated. Thanks dadzone!

EdinBmore profile image
EdinBmore

My situation was similar to yours: GS 3+4, PSA 23, involving 2 cores.

IMRT + brachy + ADT (Lupron). Last injection was May 2019; 3 mo duration. I'm STILL feeling some of the side effects of ADT (they aren't pretty. At least, not for me. Other men report few if any side effects). Hope you're one of the lucky ones. Btw, most recent report showed PSA of .04 and a robust (LOL) T of 70. Woo-hoo.

RE ADT. Suggest you read "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." Good explanation of what happens, what to expect, and tips for dealing with the side effects. For whatever it's worth: most difficult part of ADT was the emotional roller coaster ride that included depression, crying spells, and despair/suicidal thoughts. But, I also gained wt - 12lbs; complete loss of sex drive and genital atrophy; extreme fatigue; joint pain that appeared suddenly and disappeared about 6 wks later; insomnia; impact upon BP and blood work values; loss of muscle mass; and so on. Docs were not particularly helpful: none warned me of the side effects nor did they offer tips for dealing with them. Despite my research, I had no clue of the impact that Lupron would have.

If you choose ADT, I suggest: 3 mo dose (gave me a sense of control, light at end of the tunnel idea, can struggle through 3 mos of anything - time passes quickly); EXERCISE (the only thing that made me feel at all on an even keel. It made me feel better but did not affect body, per se - no increase in muscle, for example.) AND, I just started medical marijuana - gummies - prior to bed. Permits me to sleep through the night!!

Btw, Tall_Allen's advice is excellent; very knowledgeable and helpful.

Good luck,

EdinBaltimore

nuser909 profile image
nuser909

Hi, Ron. I cannot say I was happy about Lupron + seeds (Brachytherapy). I am (was) also active person, doing tennis, ping-pong on serious level, and weight lifting. Yes, ADT got me +15 pounds, other than that it was OK. But Brachytherapy did all the damage, I ended up with suprapubic catheter(it goes thru the hole in your lower abdomen). A lot of people have no problems with seeds, not me. The only good news is that PSA < 0.1(undetectable) for now.

CarrotBoy profile image
CarrotBoy

I appreciate your message from somebody who's been through it. Weight gain seems to be common with ADT. That's the first I heard of Brachy not going well and I feel for you. I wonder if it had something to do with the doctor or his method or experience? Glad your PSA is very low.

j-o-h-n profile image
j-o-h-n

I think you have started off on the wrong bunny trail..... Breaking your envelope? If you have Pca, taking a biopsy of your prostate does not break it ( may feel like it but it doesn't). It appears that you are doing what we all did when we found out we had Pca , We Panicked. Take time to get up to date on what you require for you Pca (Good Doctors, Good medical institutions and etc.) Don't put too much faith in those old wives tales and put more faith in the medical profession. As far as I'm concerned (and remember it's only ME and I don't know shit) I think all of those drinks/supplements you're taking is just witchcraft..... But to each his own....Chill out a bit and keep chomping on those carrots.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/01/2020 3:04 PM DST

CarrotBoy profile image
CarrotBoy in reply to j-o-h-n

Glad you sensed my inquiring of the "robotic" conventional medical community. I am one to empower myself, not them. No bullying me into anything. Maybe you are unaware of some great resources (book and video series) called "Chris Beat Cancer". Ten free seminars online beginning on May 12. You did not say what conventional treatments you had or your present condition.

j-o-h-n profile image
j-o-h-n in reply to CarrotBoy

As per your request:

I had RP and Rad of the bed.... On Lupron/Casodex...... small/dead weiner and big tits.....Fighting lung melanoma with Keytruda.... my favorite food is chocolate chip ice cream (two scoops).... Only time I eat carrots is just before I "see" my opthamologist... good for my breath..... My sex hobby has been replaced by my humor hobby...... More data available from my Parole officer......

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/02/2020 5:40 PM DST

CarrotBoy profile image
CarrotBoy in reply to j-o-h-n

Hi J-o-h-n. I did notice your humor in a good way. It is a good way to get thru the day. TV and reading are also good. Thanks for your message.

RonnyBaby profile image
RonnyBaby

Without consulting the responses from others, (which some of us might do) I'm struck by your messaging and (pre)concepts concerning your PCa situation.

It is clearly in 'good judgement' that you'd put out this very important phase in figuring out what is the 'best path' to follow.

Based on what I've read and learned over my 3 years as a PCa patient, I now realize how little I understood and how much I needed to TRY to learn, in MY best interests.

Here's my condensed version - I'll call Coles Notes ...

No two patients are identical, therefore, you cannot etch much in stone.

SOCs / Standards of care should be consulted / considered to see if this is something that you could run with.

Brachy + ADT is one type of treatment that is becoming mainstream, based on some positive trends and results.

I will state that some side effects (SEs) from some treatments MIGHT be significant and worrisome BUT the net results might be on a path to the best possible results one might hope for. ADT can be that way for some, but that doesn't mean that those SEs are permanent or the reason to not even consider the treatment(s).

IF you knew my whole story, you might understand my viewpoint better, but for now, I offer the following opinion.

'Brachy' is a treatment option that is becoming mainstream with favourable results in MOST instances. Of course, you need to 'qualify' for that path. Qualifying equated to staging and other initial test results that point to that path.

ADT provides another level of treatment or combination that can provide an additional benefit in the push back to fighting this disease.

I would respectfully suggest that you do more reading and research to find a level of comfort in what you are facing.

I'm sure I join the others in wishing you the best on your journey. No one wants to be here in the first place, but there is a lot of wisdom and experience here to help you.

May Good bless ......

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

Well Ronny you said it better than I did.... thanks and

May Good and God bless....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/01/2020 4:50 PM DST

ADT treatment would help shrink the prostate which would also be helpful if you chose HIFU surgery as I did. I was directed towards external beam radiation after being told that I wasn't a good candidate for RP after having had TURP surgery. Prior TURP surgery is a good thing for HIFU. I had read too many horror stories regarding radiation. After years of BPH I also anticipated that I would have a very difficult time ingesting the amount of water needed to lift the bladder away from the prostate for external beam radiation sessions. All things considered I went with HIFU even though it was out of pocket at the time (2016). It was a one time out-patient procedure as opposed to 45 radiation sessions, another consideration. I have no regrets now 3 1/2 years later.

CarrotBoy profile image
CarrotBoy

Thanks. Your message was helpful.

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