MORE LUPRON. : Another milestone on... - Advanced Prostate...

Advanced Prostate Cancer

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MORE LUPRON.

Twoofus profile image
30 Replies

Another milestone on Thursday.

I had my sixth 6 month injection of Lupron. As I continue along this difficult road, I find it increasingly hard to accurately remember stuff: complex or simple doesn’t really matter.

I don’t remember such a large increase in pain, concentration issues, physical unease, emotional stability, etc. with any of my prior injections.

Is this a common side effect to Lupron over a three year period or is it just me?

Thanks to this group (you are becoming a special family).

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Twoofus profile image
Twoofus
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30 Replies
YostConner profile image
YostConner

Concentration problems are not uncommon with Lupron. Here’s hoping you get very long success with it.

dlestercarlson profile image
dlestercarlson

I've been getting Lupron shots continuously since 2013. So normally it takes me a while to get out of the brain fog in the morning.

Concentration is a problem so I'm constantly working on this. Instantly remembering things does not always come easy which is frustrating. I've found that exercising helps a lot, I try do this every day. I had a trainer at the Huntsman Cancer Institute in Salt Lake City who worked with me on different exercises that help with cancer. The exercises seem to help rewire the brain.

Good Luck

Dennis

middlejoel profile image
middlejoel in reply todlestercarlson

How old are you? I am 82 and the symptoms that you mention are common in my recent life. I do not take Lupron at this time but I am on estradiol patches and my Testosterone is near castrate

dlestercarlson profile image
dlestercarlson in reply tomiddlejoel

I am just turning 70 and plan to live many more years despite the cancer.

Twoofus profile image
Twoofus in reply tomiddlejoel

Turned 69 in January. Are you warning me I’m at another jumping off place in life? They start coming quickly and effectively.

Oh well it has good moments living this way.

charlesmeyers1964 profile image
charlesmeyers1964 in reply toTwoofus

everyone is different usually the number on your psa determines the length of life. some men live long and some not even if their psa isn't really high.the levels u are at for fighting this disease also makes a difference

Darcym1 profile image
Darcym1 in reply tocharlesmeyers1964

Where is the evidence for this?

Break60 profile image
Break60 in reply tomiddlejoel

How long have you used the estradiol patches, what strength, and what side effects?

middlejoel profile image
middlejoel in reply toBreak60

Following AD-3 for 7 months, I stopped Lupron and Casodex, continued with Avodart and Metformin until 2-24-2015 then started patches again until 9-22-15 when I stopped patches again then continued with Avodart and Metformin until 10-07-16 when I started patches again. I stopped the patches on 11-2017 and re-started on 4-14-18.

I initially was using 4 patches until August 2018 when test results indicated that after 3+ years of using 4 patches on and off, the treatment was not working as originally so we increased the dosage from 4 to 6. Going to have new tests next week and will see where I go from here.

Other than having a nice set of boobies, I've had no side effects but at 82 years old, I can live with that

Break60 profile image
Break60 in reply tomiddlejoel

I started four patches of .1mg per day a week ago after being on intermittent ADT3 for four years . My nipples are sore and breasts are hardening. Same thing resulted from bicalutamide. I hope it gets better soon.

Maleko808 profile image
Maleko808 in reply todlestercarlson

Who did you have as a trainer at HCI? My MO mentioned a new program for physical exercise and my support team has talked about "mental" exercises as well. ThMkd for any info you may have.

dlestercarlson profile image
dlestercarlson in reply toMaleko808

My trainers name was Patric, he's not there anymore. However, he was part of the Huntsman wellness program. They evaluate what you need and then setup a personized program for you to work on. Part of this is they with with you so that you know how to do the exercises. And you can use their facility to do them. I was going up regularly to get their help. Now I follow the exercise routine but do it at the gym. The program at Huntsman only cost me my time.

Good luck

Dennis

Maleko808 profile image
Maleko808 in reply todlestercarlson

Thanks. I do like their wellness center. Most of their trainers are with the U of U and move on once they complete their schooling. Am really interested in the program that they are developing. Supposedly just hired a specialist from MD Anderson to design the program along with the nutrisionists that they have. I see my MO on the 7th so maybe will have more info then. If it help with the blahs of ADT I'm all for it. In fact my MO says he is focusing some of his research on getting beyond Lupron. He gets it, ADT isnt fun but right now is a standard. Gives me some hope for what future may bring.

Take care!

Mark

EdBar profile image
EdBar

For me ADT side effects seem to be cumulative, I’ve been on triple ADT for nearly 5 years, I definitely suffer from cognitive side effects. Memory issues, searching for words, brain fog, etc. I just turned 60.

I’ve learned to laugh at myself, it’s the new normal. I exercise daily which is supposed to help as well as exercise my brain with reading, family budgeting, etc.

It’s keeping my cancer in check right now so I view it as a “significant but acceptable side effect”.

Ed

oakmont16 profile image
oakmont16 in reply toEdBar

With you Ed. 59 and the same side effects. The grass is green!

leo2634 profile image
leo2634

I'm on ADT one year now and some days are difficult but for the most part it keeps me alive. PSA has been undetectable since my first month treatment. As for the memory thing what's the question again?😛😛

joeguy profile image
joeguy

I have been on firmagon or Lupron for 2 yrs now. The brain fog an fatigue are the worst part of it. At 55 I still work a 40 hr week as a manufacturing engineer. Complex design projects have become very difficult, and as a result I have been put on " light duty", mainly working on smaller tasks and drawings.

Jimhoy profile image
Jimhoy

Yes yes and yes!! Oh, you said years, you’re lucky. Mine was @ 3 months!! Now @ 18 months it’s soooo much more!! Memory gone and most cognitive ability “seriously” impaired!!! Add that to the normal “menopausal” SE’s and it’s time for a change!!! Taking a Eligard QoL (quality of life) vacation! PSA is non-detectable so, now is the time as that standart ADT treatment now calls for 18mo’s.

I’m hoping that the PSA#’s behave and I can get my: mind, personality, strength & body, job........ back!! Or maybe some of it.

But hay......I am still alive to complain!!!

Jc

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

What was your question again?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/24/2019 12:11 PM EST

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

BTW I'm still trying to remember my twin brother's birth date. I'm fairly sure is name is john.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/24/2019 12:15 PM EST

Hirsch profile image
Hirsch

Try a steady exercise program. Not on one day,then off 2. You will be amazed at the results. Good luck

monte1111 profile image
monte1111

On lupron for 2 years now. 69 in June. Used to be sharp as a whip. Now dull as .... can't think of a word. As someone here once said words are at the tip of my tongue. People help me with the words. They never say anything. But I sometimes mumble I'm on drugs. Retired, not working so only an inconvenience for me. Don't know if you quit that you will regain the use of those brain connections. Someone here probably knows. Don't believe that matters to me. Believe I'm a lifer, when it comes to lupron. Pun intended.

pilot52 profile image
pilot52 in reply tomonte1111

Hirsch is right about exercise. Also when you retire you lose interaction and job responsibilities . Play brain games...they really help you ...I would give you the name of the one I use but I forgot the name.....no really Lumosity is the name....flying makes me concentrate, I do not do crossword puzzles but that would also help...Now what was I doing....????? Blue Skies. Pilot 52

monte1111 profile image
monte1111 in reply topilot52

googled lumosity. looks like it might be fun. wrote it down do i won't forget it. thanks. everything helps.

timotur profile image
timotur

I am about to start zytiga pills, 4x/day I believe, anyone have ideas on the best time to exercise, e.g. early morning before taking a pill, or does it really matter.

jedgar1 profile image
jedgar1 in reply totimotur

I take my 4 zytiga before I go to bed and prednisone in the morning, exercise around 2 in the afternoon go home and nap from 4-5 I am 67 and have been on it and Lupron a year makes you tired.

timotur profile image
timotur

Thanks Jed, if daily zytiga can be taken at once, I'll take it at night like you, and exercise in the morning to try to negate the effects, so I can get on with my day.

It’s not just you . I went thru all of the same.

ShenStone profile image
ShenStone

I am now 19 years out on Lupron continuously and I am getting along and just moved into a new house on an acre of land on the top of a mountain after my wife’s death three years ago. You have to know that it is not easy but you can live a reasonable fruitful life For in spite of the side effects we all live with chronically every day. Courage my friend. Michael

monte1111 profile image
monte1111 in reply toShenStone

I, for one, certainly stand in awe of you, Mr. ShenStone!

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