Stop all meds: If you think you only... - Advanced Prostate...

Advanced Prostate Cancer

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Stop all meds

Cynthgob
Cynthgob

If you think you only have 8 months left why not stop adt and Zytiga ? Won’t having the drugs out of your body and your testosterone back at least give you a feeling that you are more yourself? Quality of life should enter into the equation? Or am I way off on this? We both know he’s not going to make it with his diagnosis just trying to give him some normalcy.

68 Replies
oldestnewest

I think it would but it takes a long time to get it out of your system. The half life is 6 months, but you should slowly recover. I try to get my PSA down as low as I can and then go off the meds. I hate the way they make me feel. Stay off as long as I can. I know it is a dangerous road to take, but on the meds is not truly living.

Shooter1
Shooter1 in reply to Rob1053

I had to make that decision while on xtandi full dose. I was a complete invalid. My wife and I decided 3 years of life was better than 10 years as an invalid. Cut to 80 mg (half dose) and I can live with that, hopefully for a long time.. 4 years into a 12-18 mo life estimate.... good luck with what you decide. Please keep us informed, we will all sometime get to that point.

dhccpa
dhccpa in reply to Shooter1

Is Xtandi taken on empty stomach like Zytiga? If so, have you tried taking the half dose immediately after a meal?

Shooter1
Shooter1 in reply to dhccpa

I usually take it at 9pm after small snack. Then bed at 10 to11.

dhccpa
dhccpa in reply to Shooter1

Did the doc tell you to take on empty stomach? Xtandi may not have those instructions like Zytiga. Just wondering.

Shooter1
Shooter1 in reply to dhccpa

No advice either way.

dhccpa
dhccpa in reply to Shooter1

Thanks looks like Xtandi's are to take either way, whereas Zytiga officially is to be taken on empty stomach (some docs are instructing a 1/4 dose with low fat meal, saving money and cutting side effects).

IBstan
IBstan in reply to Shooter1

I take only take 1 pill of Xtandi every other day until my psa rises to 5. to 9. and then go back to 2 pills a day until psa falls to under 2. then go back to 1 pill a day to stabilize psa to under 2. then go to 1 pill every other day..... and repeat this cycle... Monthly blood and Psa testing to track psa...

Shooter1
Shooter1 in reply to IBstan

Wow, that really stretches a bottle of pills. Good luck with results and keep us posted..

How old is your husband?What other meds besides lupron and zytiga is he taking?

A little early in the game to be calling it quits already. I read your bio.

Maybe he needs a anti-depressant added to his regiment. That help my demeanor and outlook immensely.

Cynthgob
Cynthgob in reply to XPO1

We were told 3-5 years and we are at 3 3/4 years. And I know people will say doctors don’t know. But we are pretty sure she’s right. He’s not willing to go thru chemo again. He’s sick of being sick.

XPO1
XPO1 in reply to Cynthgob

Sorry to here that. I still think its early to quit but everyone gets to make that choice

Hidden
Hidden in reply to Cynthgob

We know how how he feels .

Nalakrats
Nalakrats in reply to Cynthgob

I wouldn't go thru Chemo again either--for whatever that is worth--my reasons are personal/and scientific.

Nal.

Schwah
Schwah in reply to Nalakrats

Your personal reasons are your own of course. What are your scientific reasons may I ask Nal?

mrscruffy
mrscruffy in reply to Cynthgob

I totally get what you are saying, I think all of us are sick of being sick. My doctor told me that "statistically" I had 18 months, that was 19 months ago. The thing with statistics is we don't know anything about the people included in these numbers, were they diagnosed after cancer was everywhere? How were they treated etc. I had many thoughts of harming myself just to get it over with but my friends convinced me that we have more crazy memories to make and made me see a Psychiatrist, single pill fixed the thoughts "racing" through my head. Good luck in what ever choices you make

Shooter1
Shooter1 in reply to mrscruffy

Keep going..they gave me 12-18 mo. and I am 4 years into this fight.... and feel pretty good. Just new normal instead of old normal....

These sorts of questions occur to me often even though I am (hopefully) not that close to where I urgently need to ask them. Depending on the man, and length and type of treatment, a recovery of T to reasonable levels is not a given. So some pursue TRT, and have the T added back for them.

This used to be a complete no-no, but some docs are now willing to do it. It obviously has associated risks along with any potential benefits, especially during the COVID pandemic (where ADT is thought to possibly be protective). This is in no way advice on how to proceed, but just something you might research and consider.

The urologist Abe Morgentaler has spoken about this, and some of his lectures are on youtube. (As a TRT practitioner, he of course brings his own bias to his position, but the idea of pursuing quality of life over length of life is not unique to him.) A less drastic alternative is to try to at least add some estrogen back via patches or gels, since ADT depletes that along with T.

Best wishes to both you and your husband!

MateoBeach
MateoBeach in reply to noahware

Agree wholeheartedly with your 👍🏼🙏🏻suggestions.

Hidden
Hidden

Dear Cynthgob . Many of us here have passed our given expiration dates ... most of us understand that living with APC is misery with an altered QOL .. those that persisted for a decade or even two past a stage #4 dx have suffered mucho . We know this . You are not way off on anything . QOL is most important . When it’s ALL suffering with no escape, then we will all submit to mercy . I’ve had no t, little strength and practically no endurance for almost six years now . I exist solely for my wife’s love . Drugs , no drugs , we are whittled down by it all . Love is the answer .. Thank God that he has you by his side . 🙏

Kaliber
Kaliber in reply to Hidden

Amen my brother Whimpy-p💪💪💪❤️❤️❤️

dublin1717
dublin1717 in reply to Hidden

Gosh whimpy that brought a tear to my eye. Amen to that.

BigTex3
BigTex3 in reply to Hidden

Wimpy-p I love this response. That is my goal as well. I’m only 7 months into this journey. DX at 51 with stage 4 and lots of Mets and plan to be on this site 20 years from now. It’s definitely a change, but I need to walk my daughter down the aisle and play with grand babies. I’lm staying in the fight as long as God is willing. I believe faith, love and positivity is the key. No one on this planet knows how long we have to be here.

Jackpine
Jackpine in reply to BigTex3

BigTex3,

You have a lot of time and things to fight for. Walking your daughter down the aisle is and amazing feeling.

Fight the good fight!!!

Shooter1
Shooter1 in reply to BigTex3

I got to walk my daughter down the aisle and hold two new grand babies they said I would never see. Now waiting for eldest grandsons wedding. Life is good even with NO T. Hope to see you again soon Whimpy-p. Doug

MateoBeach
MateoBeach in reply to Hidden

👍🏼👍🏼👍🏼💪💪💪❤️❤️❤️🙏🏻

Dale150
Dale150 in reply to Hidden

Well said Whimpy-p.

Hidden
Hidden

I think most of us have had that thought to toss it all to the wind .

Kaliber
Kaliber in reply to Hidden

Yea .... but it’s scary when the wifey “ the hammer “ is standing there ready to kick my a$$ if I croak ...Yayahahahaya

Just say’in 😊😊😊🌸🌈🦋🙂❤️❤️❤️

Hidden
Hidden in reply to Kaliber

Yah , I bet ? Hammer down . Tuff love😂 🔨

Kaliber
Kaliber in reply to Hidden

Lol ❤️❤️❤️

Hidden
Hidden in reply to Kaliber

❤️😷😳

Shooter1
Shooter1 in reply to Kaliber

Gee I've got one of them kicking/living with me too.

Kaliber
Kaliber in reply to Shooter1

Bless their hearts ... what would we be without them ? 😊😊😊❤️❤️❤️

While I understand how you might imagine he would feel better without Lupron, that is (sadly) not what happens. Lupron and chemo relieve pain and may give him better quality of life. Another kind of chemo (Mitoxantrone) is purely palliative.

Cynthgob
Cynthgob in reply to Tall_Allen

Thank you. I did not realize that. I just wanted him to have as much strength in the end of life that he could have. Sort of a silly wish i guess.

It is not a silly wish. I feel the same way about my husband. Heavens I bought him a steam sauna cabinet to do ozone steam saunas just to help with quality of life. 3 years ago they gave him 2 years to live even with chemo. My husband has small cell or Neuroendocrine Prostate Cancer.

I am trying to have as many adventures as I can with him. In the summers we are going camping and in the winters he and I have started paper crafting. He loves it and is having fun.

You go have some fun with your honey too.

hugs and love

Softwaremom.

Hidden
Hidden in reply to softwaremom00

A sauna is wonderful . I like your attitude . 👏😎

❤️❤️❤️❤️

Hidden
Hidden in reply to Cynthgob

Love isn’t silly .

5to0
5to0 in reply to Hidden

Love is everything🥰. Love yourself , your family, pets and your friends. Love is what makes life worth living.Peace is a space that you move through very rarely and very briefly- but you are not allowed to stay there. You have to keep moving and go do what you do. Because you can.

Neil Peart.

Love is what we do♥ when life becomes real - cancer wakes us up to real, wonderful life.

Hope that this is helpful to some of you. My husband found this quote and he love it.

enjoy your day everyone.

🦋

Hidden
Hidden in reply to 5to0

Neil Peart is one of Best drummers of all time .. ❤️✌️

5to0
5to0 in reply to Hidden

He was an incredible writer too I have read all his books

25 months ago I was diagnosed and asked to go right into hospice. They said I had only a couple / few weeks at best. That was 25 months ago.

My friend Mark spent 22 years fighting PCa and ran out of “ all possibilities “ for treatments and was sent home to live out his remaining time in home hospice. “ THAT was 3 years ago “ . You just simply don’t know how much time you have left.

There are and will be a lot of opinions here on this subject but in my own “ opinion “ , you never know how much time left and ( to me ) with some drugs / treatments still available you might be giving yourself weeks, even months of extra time with your loved ones. You certainly can’t say it wouldn’t happen. Lots of people are told there is nothing left for you but still persist.

I can’t even begin to explain how it feels to be told , in your very first meeting with your oncologist/ hospice care team, that you should just go home and die, that there is no hope for you, death is nearly at hand. I can tell you that the mental trauma in myself and my wife was intense. You , still have some “ stuff “ going .. still the possibility of adding maybe a bit longer life .

I absolutely “ get it “ how men here just plain get sick and tired of feeling like total schitt, day after day, month after month, even year after year for me now. That just throwing everything related to fighting away and giving up would be so attractive. Still my wife would kick my a$$ if I gave up and died and I’d never let her down if I had a choice, in the same way I’d never intentionally let myself down as well.

I’m not saying my perspective is right and others are wrong ... but I’m a fighter that will always see my glass half full. I won’t lay down and just croak willingly .... I believe everyone should should fight to be with their wife and family as long as humanly possible, that it’d be selfish otherwise. I’ll just pull up my big boy pants and move forward as long as possible.

This is just my own opinion and viewpoint and your mileage may vary .... ultimately each and every one of us has to choose for themselves as it should be. I choose to wring the last possible moments out of life and if feeling like horrible schitt everyday makes my wife happy and gives me more life .... then that’s my choice for myself.

This “ opinion “ offered as a caring brother on the river Styx. ❤️❤️❤️

dmt1121
dmt1121 in reply to Kaliber

I guess I have a contrary opinion. Everyone does not have the same disease stage, severity, emotional state, or will to fight anymore. How you deal with your disease is fine for you but telling someone "get your coffin and sleep in it at night to simplify things" is truly unbelievable! How is that helpful?

This isn't a forum for you to shame others about their questions and thoughts or prove your way is the only right way. We may be "fighting" a metaphorical "battle" but we are not all fighting the same battle, in the same way, in the same place, under the same circumstances at the same time.

Having more time is perhaps less important at some point, if your quality of life is so bad that you don't want to live. The question is what is that threshold. Feeling less tired and stronger by dying five years sooner, seems like a poor trade to me but there is some point down the road when trading in strong treatments for palliative care may be a good one.

Kaliber
Kaliber in reply to dmt1121

Thank you for expressing your point of view as well. Most views here, like yours, will be from brothers or their caregivers as we move toward our eventual end. My offering is from my own experience at having already been at “ the end “ and made it back for a while thru miraculous happenstance. My post was intended to stimulate thought and conversation and evoke emotions . Most all of us old fharts have a loving wife - caregiver sitting right there by our side. It’s easy to say “ I’m sick of this, I quit “ , but when you are laying there in your death bed watching the extreme grief your death is causing ..... ...... well you too will share that grief equally. It’s intense beyond expression. If , during ongoing treatment, you say “ this is too much, I can’t do it anymore “, and let go ( before it comes unavoidably , naturally ) your loving wife will want you to make the decision that makes your suffering better, she loves you so much she will sacrifice her own reality to suit what you want / think you need.

But ..... when you both are there , you are slipping away .... your wife is experiencing that extreme intense pain of love loss , you will share it with her. At that moment, if you really love her, you will give anything to spare her from all this hurt and unrelenting emotional pain . Even including being sick and horribly uncomfortable all the time just to be with her. It’s too late “ then “ ... THEN you’ll realize you could have had more time together . If it came naturally- unavoidably.. then you have given your best. If you caused it early , selfishly actually ... you’ll wish you had made a different choice....

Once again, just my take ... my opinion .., there are ultimately only two possible variations on this situation... I’m saying “ I “ don’t really want to have caused this intentionally .....that’s all.

Just say’in ❤️❤️❤️❤️

dmt1121
dmt1121 in reply to Kaliber

I appreciate your sentiment and good intentions, as you have explained them. As much as my wife and daughters may mourn my loss and feel great pain, they will feel that pain at whatever time it occurs. After a time, they can move forward and have new lives with new directions that don't include our care and our collective suffering.

It is not just the time we have. It is the time everyone has, who is within that circle. What is the quality of their lives too, as I try to smile while in extreme pain and everyone is trying to be strong for each other?

I believe there is a balance point to be reached, that actually considers our loved ones and caretakers (our angels). It is a point of freedom for us and for them.

I cannot speak for anyone else and I do not. I just feel that our positions here on this forum, can be framed in a much more helpful way, no matter what they may be.

Be safe, healthy and live long.

dublin1717
dublin1717 in reply to Kaliber

If & when the time comes I hope my husband will feel just like this. Thank you for sharing Kal.

Kaliber
Kaliber in reply to dublin1717

Thank you dublin1717 ... a big warm fuzzy e-hug out to you.

Do not go gentle into that good night.Rage, rage against the dying of the light.

Dylan Thomas

Kaliber
Kaliber in reply to Canoehead

Kewl ...👍👍👍

Hi Cynthgob

I made the very difficult decision to stop conventional treatment back in early 2017 due to severe side effects and have only been taking Essiac tincture and CBD oil since then.

Four years later I'm doing fine and have not regretted that decision.

I'm not suggesting anyone else should follow my example. We're all grownups capable of making our own decisions. I'm just reporting what I've done and my results so far.

If you click on my avatar picture you’ll be able to read my bio and some posts I started about those supplements and my own cancer journey.

I'm the first to admit that there's no peer reviewed scientific evidence to show that Essiac or CBD oil are effective, but I've been taking Essiac tincture together with CBD oil for almost 4 years and am very happy with my results so far.

When I stopped ADT in early 2017 due to severe side effects my oncologist assured me that my PSA would keep continually rising and my mets would spread further.

However, almost 4 years later my PSA is virtually the same as when I was first diagnosed December 2016 and my 2020 PSMA PET CT scan was better than my December 2016 PSMA PET CT scan.

I still see my oncologist every 3 months so he can keep a track of my progress.

He is amazed how well I'm doing as it's over 4 years since I was first diagnosed. He tells me to just keep doing what I've been doing because it seems to be working for me.

Here's a link to the post I started on this forum about my own cancer journey.

healthunlocked.com/advanced....

Best wishes to all

Dave

Hidden
Hidden in reply to Davek1200

Bravo👏

dublin1717
dublin1717 in reply to Davek1200

Wishing this good health continues for many years. Just read your history. Good on on you. 👌

MateoBeach
MateoBeach in reply to Davek1200

Excellent! Keep on keeping on Davek 👍🏼

why do you think you only have 8 mo...my doctor told me I had 60-90 days 3 years ago, and I'm healthier now then I've ever been...stage 4 for 4 years golf ball size tumor in my femural head over 30 1 cm mets in my bones and lymph nodes.

Please tell me its really serious and you feel that way...but don't put a label on it or you'll talk yourself into it, really I mean that with love.

CynthgobPlease try some other meds or get a second opinion. I’m not as knowledged as these guys here but tease out other options.

No giving up yet.

Love & kindest wishes to you & your man.

Cynthgob, I agree with the suggestions from. Noahware above. It’s worth trying some estradiol patches as this can markedly improve symptoms and well-being while on ADT. Starting with perhaps 2 patches at a time of 0.1 mg/24 hrs. change one out every two days and see if he feels much better. Reducing dose of meds also worth considering. The use of Testosterone replacement is risky. High dose T ( Supra-physiologic) can also suppress PC growth and be beneficial given cyclically(BAT). But for some with advanced PC it can do the opposite and stimulate the cancer growth. No way to tell before you try it and see what PSA does and how he feels. But that is what I would try given your description of his condition. With caring blessings. Paul

Obviously, the question you are asking about quality vs. quantity of life brings out a lot of opinions from others.

I guess my question to you is: what does he want? Respect that. Isn't that what you would want for yourself?

EdinBaltimore

There might be a clinical trial he could go on. Ask the oncologist.

Cynthgob
Cynthgob in reply to Graham49

He doesn’t want to do that. He doesn’t want to spend the last months in the hospital.

Tall Allen could probably advise you better on clinical trials, (I suggest you message him) but I don't think they all require you to be in hospital. Also if the clinical trial is successful he might live much longer.

I believe this topic is a personal decision which may have many possible outcomes. I can relate to a previous comment from one of my brothers here. I asked one of my doctors, “What if I choose not to treat myself? She answered by saying, “I’d hate to see you make that decision only to regret it later on since there’s no going back on this decision.”

A pilot sitting next to me on a flight suggested a good book to read and I took him up on it. Yesterday I discovered that the author, Atul Gawande, together with PBS, made an hour-long film aired on the program Frontline entitled “Being Mortal”.

In this program the author, a doctor at Brigham and Women’s Hospital in New York, admits to having lied to one of his patients to give him false hope. He pushes a thyroid surgery on a woman who’s clearly dying of lung cancer, effectively robbing the young couple of three months of quality time. Feeling guilty about doing so, he embarks on a journey to learn how to handle the inevitability of death for late stage cancer patients.

It’s a heart warming, tender (probably tear jerker) portrayal of leading patients to realize it’s over sooner so they can enjoy a sweet time with loved ones free of tubes and wires and painful procedures that will have no effect other than to assuage the oncologist’s battered ego at not healing the patient.

“Being Mortal” can be found on YouTube if you’d like to invest an hour.

I really like reading the stories of men who have made certain decisions and are still here long past their "expiry date". I always have in the back of my mind, however, that there are many men who made the same decisions and are no longer here to tell us their story.

Holy shit.... My 8 months to go, was 8 months ago...........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/14/2021 7:29 PM EST

Kaliber
Kaliber in reply to j-o-h-n

Old golfers never die .... they just lose their balls ....🌼🦋🌸🌻🌈❤️❤️

j-o-h-n
j-o-h-n in reply to Kaliber

Old doctors never die... they just lose their patience....🌼🦋🌸🌻🌈❤️❤️

(Ain't that the truth?)

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/17/2021 2:11 PM EST

Kaliber
Kaliber in reply to j-o-h-n

Yea ...in our type of guys especially 😱😱😱❤️❤️

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