Hormone therapy: For the men who have... - Advanced Prostate...

Advanced Prostate Cancer

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Hormone therapy

Sunnyvango profile image
33 Replies

For the men who have had ht.- how hard is it being on this? What is the worst part? How much does it reduce quality of life or not? Also what might be difficult about radiation from personal experience?

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Sunnyvango profile image
Sunnyvango
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33 Replies
Magnus1964 profile image
Magnus1964

HT affects everyone differently. I personally have had no problems with Casodex, Abiraterone or Xtandi. The only problems I have ever had with any of these is night sweats.

Also, I have had radiation to the prostate, I tolerated it fairly well. A little gas but that passes so to speak.

Sunnyvango profile image
Sunnyvango in reply toMagnus1964

Thank you Magnus 1964

FCoffey profile image
FCoffey

See my response to this question at

healthunlocked.com/advanced...

As Magnus wrote, it affects everyone differently. The best part of ADT is that you can stop it - something you can't do with RP or RT. If you do decide to try it, I suggest insisting on the one month (7.5 mg) injections of Lupron (assuming that is the drug they choose) rather than be stuck for 3, 4, or 6 months if you don''t tolerate it well.

Good luck.

Sunnyvango profile image
Sunnyvango in reply toFCoffey

Thank you. it's all helpful.

Sandy752 profile image
Sandy752

I am 74 and have been on Lupron for five years -- an injection every four months. Began taking it after external beam radiation failed. Since the beginning it has not been possible to have an erection. I have fatigue which seriously limits my activities. Fatigue was not an issue in the first year or so but has gotten worse as time has gone on. I understand the fatigue is cumulative and will get worse. I still get hot flashes, especially at night, but they are not as intense and do not last as long as they did in the beginning. I have lost muscle tone but have maintained my weight by doing as much as a I can including lots of walking. I am not complaining as I am still here and enjoying life with my wife of almost 50 years. PSA is currently .23 and has been at that level for the past 18 months.

Sunnyvango profile image
Sunnyvango in reply toSandy752

thank you. Every little bit helps

Crabcrushe profile image
Crabcrushe in reply toSandy752

Praise God. That is just cool, and it's what my wife and I are shootin' for. At our age, fatigue's gonna get worse every year, anyway, right?

Sandy752 profile image
Sandy752 in reply toCrabcrushe

Yes, I am blessed. The fatigue sometimes is a nuisance (late afternoons are sometimes bad) but I was out playing bridge tonight and feel pretty good. Every day is a bonus as I survived kidney cancer 30 years ago.

Break60 profile image
Break60 in reply toCrabcrushe

Yes but it’s a lot worse with ADT!

in reply toSandy752

50 yrs ,wow! Keep rolling...

Kevinski65 profile image
Kevinski65

I think age has something to do with it. At 75 to 80 sex might not be as important as other things like companionship. Fatigue, depression, weight gain are manageable in many cases. Effexor, for example helps depression and hot flashes. So it depends on your tolerance for the game of chance. No hormone treatment may mean that , ' the great banshee' will carry you home quicker than without it. Just sayin'.

in reply toKevinski65

Son of a banshee !

Sunnyvango profile image
Sunnyvango

Thank you Kevinski65

smroush profile image
smroush

Boy, responses to ADT seem to really, really vary. I was on ADT (Lupron and Casodex) for 26 months starting when I was 62. While I experienced lots of side effects, none of them were all that serious. I felt they were mostly a nuisance. Loss of bone density was probably the most serious. I had a lot of trouble sleeping and found that a time released Ambien (a sleeping pill) helped. Hot flashes were irritating but not a huge deal. Near the end of it I felt fairly tired and strongly recommend exercise.

FYI, I was a Gleason 9 at diagnosis with metastases to the bladder and pelvic lymph nodes. In addition to ADT I had external beam radiation. I have been off all cancer meds since October 2014 and my PSA has remained at or below 0.2 ever since stopping the meds. Best of luck to you.

SuppWife profile image
SuppWife

My husband is 65 (almost 66) was diagnosed almost a year ago. Failed surgery. He’s had his sixth Firmagon shot and honestly so far his side effects have not been that bad. He has some trouble sleeping, but CBD oil helps(hemp based bc we are in TN). I use that almost every night too. It really is a great sleep aid.

He has some hot flashes but not severe. He’s gained about ten pounds but he has not exercised like he should and our diet has been sloppy. We need to work on both those aspects.

His blood work is very good, but he’s taking quite a few supplements which we think are possibly helping him with side effects. (People have lots of opinions pro and con on supplements). I’m happy to share what he’s taking if you’re interested.

I’m reading from others that side effects may very well get worse after he’s on ADT longer, but so far he has not suffered with much fatigue. Our sex life has suffered but incontinence has been part of that too. He feels some of what I would call the “blahs” but not “blues.” He’s staying active in his business and right now his biggest and most frustrating struggle is post surgery incontience.

My husband’s PSA was high after surgery and rising so we didn’t really have a choice.

Best wishes to you and your husband.

Moespy profile image
Moespy in reply toSuppWife

Hi SuppWife,

Can you share the list of supplements he is taking?

Thank you,

Jim

SuppWife profile image
SuppWife in reply toMoespy

I'm happy to share the supplements my husband is using, but please understand, these are supplements and doses we've chosen for him based on our own reading and research and anyone interested in taking supplements should do their own research as to dosages and supplements which may or may not be appropriate for them and with other meds they may be taking or treatments they may be receiving. My husband takes NO daily/regular prescription medications aside from the Firmagon shots he's been receiving.

He takes the following daily:

Modified Citrus Pectin - Thorne brand (5 grams 3x a day..empty stomach)

IP6 - Pure Encapsulations brand (8 grams 2x a day..empty stomach)

inositol - Life Extension brand (1 gram 2x a day..empty stomach)

Vitamin D3

Vitamin K2

Vitamin B combination

Turmeric Curcumin with Bioperine - BioSchwartz brand from Amazon

5 Defenders mushroom supplement - Real Mushroom brand (2 capsules a day)

European Milk Thistle -Life Extension brand (3 capsules a day)

Triphala (Organic India from Amazon...great if you have constipation issues)

Most of the above he has been taking for at least six months. He started MCP in June 2018. He started IP6 in August 2018. I really wish we had known about them prior to surgery because I would have started them prior to his surgery.

I have purchased berberine but he hasn't started taking it and we are going to ask his GP about Metformin when we see him in March. We will also get updated complete blood work to monitor liver and kidney function, etc. I believe the IP6 lowered his triglycerides from 154 to 120.

Except for a slightly elevated triglyceride level (before IP6), a little extra weight, and prostate cancer my husband has no health problems (no high blood pressure, no diabetes (last glucose reading in October was 87), In October his calcium was 10 (hasn't changed for years) and Alkaline Phosphatase 118 u/l.

My husband's urologist is aware of the supplements he's taking and he has never objected to any of them.

I can add missing dosages later.

If there is a problem with my listing the supplements and dosages my husband uses please let me know.

We are very interested in supplementing the traditional treatments he is receiving and I welcome any input from others on this board who appreciate supplementation and complementary treatments.

Moespy profile image
Moespy in reply toSuppWife

SuppWife,

Thanks for sharing. Below is my regimen. Some I have added recently but most I have taken for the last 2 years. Not an expert on this subject just go with what others have said is safe and might be effective at warding off the evil spirits.

Thanks again,

Jim

1.Vitamin C - 1,000 mg

2.Magnesium - 450 mg

3.Vitamin D3 - 5,000 IU

4.Super K2 Complex - 600 mcg

5.Modified Citrus Pectin - 5 Grams Powder

6.Quercetin with Bromelain - 880 mg

7.Nattokinase - 4,000 FU’s

8.Omega 3 EPA & DHA - 2,000 mg

9.Turmeric Curcumin with Black Pepper - 1,800 mg

10.Cayenne - 1,000mg

11.Broccoli Sprout Extract - 1,000 mg

12.Resveratrol - 1,000 mg

13.Ginger Root Extract - 550 mg

14.Pomegranate Extract - 400 mg

15.Green Tea Extract - 800 mg

16.Lycopene Extract - 50 Mg

17.IP6 1,600 mg + Inositol 440 mg

18.Serrapeptase - 80,000 Units

19.CoQ10 - 400 Mg

20.Bitter Mellon 1,200 mg

SuppWife profile image
SuppWife in reply toMoespy

Thank you for sharing! I have purchased a couple (#7 and #18) on your list but haven't fit them in. I forgot about CoQ10...he takes 120mg vegan gummy. I'm interested in adding #20. I've just bought a muscadine supplement, but haven't started him on it same is true of Omega 3. He has taken quercetin and alpha lipoic acid in the past on recommendation of an MD who does alternative medicine, but haven't worked them back in after giving priority to some of the others like the IP6 and MCP.

SuppWife profile image
SuppWife in reply toMoespy

I forgot to add a big one. He has been taking concentrated BIRM for the last four weeks. Doses of 2.5ml twice a day.

Crabcrushe profile image
Crabcrushe in reply toSuppWife

You have a fantastic attitude.

SuppWife profile image
SuppWife in reply toCrabcrushe

Thank you for saying that.

Crabcrushe profile image
Crabcrushe in reply toSuppWife

You're welcome. My best male's in the same boat.

in reply toSuppWife

Soundspretty good

bobdc6 profile image
bobdc6

Annoyance mostly, hot flashes, no sex, hard to concentrate. 18 months Lupron/Casodex, stopped one month ago, still have side effects, life is good.

Bob, 76, G9, proton, adt

Crabcrushe profile image
Crabcrushe in reply tobobdc6

Have you tried venlaf..Effector for the hot flashed?

bobdc6 profile image
bobdc6 in reply toCrabcrushe

No, off of it now, hoping it'll go away by itself.

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

Big Tits!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/19/2019 6:33 PM EST

Sunnyvango profile image
Sunnyvango in reply toj-o-h-n

you make me laugh

Mkeman profile image
Mkeman in reply toSunnyvango

Be aware of serious side effects iike high blood sugar, heart rhythm problems and osteoporosis. ADT tied to all of them.

bobdc6 profile image
bobdc6 in reply toj-o-h-n

Oh yeah, I've got those too (I used to like them until I got some).

j-o-h-n profile image
j-o-h-n in reply tobobdc6

LOL My thoughts exactly....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/20/2019 9:23 AM EST

Crabcrushe profile image
Crabcrushe

My Wife gives me ashwaganda and Holy basil; I ordered BIRM, as well.

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