THIS IS WAR!!!: Posted this on my... - Advanced Prostate...

Advanced Prostate Cancer

20,785 members25,892 posts

THIS IS WAR!!!

Stoneartist profile image
57 Replies

Posted this on my facebook site today:

Right now I am angry!!!!! 4years of housebuilding and I have managed nearly everything. But now I have up'd my dose of Xtandi (important drug in the fight to keep cancer at bay) from 80mg to 120mg/day again - which is what I should have been on - and the side effects are sooo soooo clear. Fatigue, FATIGUE and more Fatigue. I thought I was mentally stronger - but after another day more or less wasted I am pissed off. Now I will go to war:

I will not let this beat me and from tomorrow am on the warpath to the exclusion of everything else. This is tough - but I will prevail - and no - its not the cancer gaining ground - we have that well covered - its the side effects of the drugs --- GRRRRR - I will keep you informed

Written by
Stoneartist profile image
Stoneartist
To view profiles and participate in discussions please or .
Read more about...
57 Replies
Stoneartist profile image
Stoneartist

No hero here - just mobilising for the fight with fatigue - it creeps up on you!!

MJCA profile image
MJCA

Awesome attitude. You’re my new hero. Being Norwegian, I am sure you have Viking blood running through your veins. Just be the badass modern day Viking that you are!!

MateoBeach profile image
MateoBeach

Unfortunately, anger will not change the side effects profile of Xtandi. It is what it is. And what it is, is just too severe, Grade 3. Good enough reason to switch to Nubeqa, which does not get into the brain. You are eligible for that as metastatic and post-docetaxel even if still HSPC. Tell MO you can not tolerate enzalutamide at an effective dose, so it is out.

Mrtroxely profile image
Mrtroxely in reply to MateoBeach

Nubeqa , xandi, eralda.Daralitimide, enzalutamide, applutimide

All got side effects, maybe they will better side effects for each individual ...

Kaliber profile image
Kaliber

ryte on brother. There is a small antidotal school of thought that thinks that “ those “ with the most severe Xtandi SEs , are the most sensitive to it. They are the ones that last longest on Xtandi when they are. Xtandi has me in a mobility cart because of the extremely strong SEs. I have to eat opiates to deal with it’s discomforts. It’s debilitated me but it has let me cheat hospice ( hospice my first recommendation of care when DXed ) for 49 months. There are workarounds for many of the SEs and like with everything, you get used to them over time and shine on much of it. Hang in there …unbeknownst to you, you might be on a lucky streak. Just say’in ❤️❤️❤️

joeguy profile image
joeguy

I had to stop Xtandi due to side effects....... some tolerate it well, other like me get their asses kicked by it.

Boywonder56 profile image
Boywonder56

I was a housebuilder....hands on for almost 45 years apc and its treatments ...put me on disability in 1 yr after dx...i understand your battle cry....but idecided to build my own place....smaller than id like and live evryday to the best of my ability...it was more the brain fog coupled with the fatique...i could not retain an adequate thought process...also was a hazrd to be around the power tools....of course i dont have enough money saved but as freewheelin franklin said........."..dope will get you through times of no money.........better than money will get you through times of no dope.".... ..obla di obla die.....bw

Kaliber profile image
Kaliber in reply to Boywonder56

lol …. Love it ❤️❤️❤️

spencoid2 profile image
spencoid2 in reply to Boywonder56

I am on docetaxel and do not know how the side effects compare to those of Xtandi. I am also doing my version of the "Rick Simpson" protocol which involves high doses (still ramping up) of extract that I made years ago. I just had it tested and it is about 35%active THC and 35% active CBD. I hardly get stoned whereas this much pot would have me immobile in the past.

The worst SE of docetaxel is the brain fog or confusion which also has a physical side to it. Sort of like walking dead. Then there is the diarrhea and fatigue to the point that I feel unsafe riding my e assist bike. It is the brain fog that was the worst because I could not get much done. I can take it slow and do a lot less than I am used to but the fog was really distressing.

The cannabis seems to neutralize the fog. I am currently taking 10 drops of diluted oil that contains about 125 mg of active THC and about the same of active CBD. While taking the RS oil (and chemo) I don't get high smoking a joint, I could probably smoke a lot and get stoned. I used to be a real light weight, couple of hit guy. To make the "SSO" I used high strength home made ethanol as a solvent not the awful solvent Rick advocates and evaporated it at fairly low temperature under vacuum so as to retain as much of the whole plant volatile components but hot enough to decarboxylate as is evidenced by the high active percentage of THC and CBD) The goal is to reach about10 times this dose. I will report back if I am able to at that dose :)

Nugger profile image
Nugger in reply to spencoid2

So, whats the differance ? To what i made,heated the buds for 30 minutes on lowest setting in oven, then crumpled it in a 50/50 olive oil water solution & evaporated the water by heating on low setting on stove. I used this to cure the pain i was having after dental bone grafts,knocked me out for 36 hrs after eating it,with a slice of bread but it cured the pain & healed the grafts, so big believer !

spencoid2 profile image
spencoid2 in reply to Nugger

Not sure how the oil cannabis flour mix is used. I also made some flour on the advise of a forum member. It is super easy and if I had the right material (i want equal THC and CBD) and if I didn't also have the AC/CD resin ready made I would probably just eat flour. I have both high CBD and high THC flowers and could do it this way but by the time you are at the end of the RSO protocol you are taking one gram of active canabinoids three times a day. Since the flowers have about one tenth the CBD and THC of the concentrate it amounts to a lot of stuff to eat. Just an approximation but if my AC/DC resin has over 700 mg per gram of THC and CBD(combined) i just need a little more than a gram per dose. Using the flowers I have which have maybe one tenth the amount of each THC and CBD meaning that to get the same dose I would need to eat 20 times as much per dose or about an ounce of pot flowers. I might have the numbers off by as much as a factor of two but I think you get the idea. There is a limit to how many brownies I can eat or at least there should be.

Nugger profile image
Nugger in reply to spencoid2

You do know about suppositories ?Good video on YouTube

spencoid2 profile image
spencoid2 in reply to Nugger

I made some and sort of think that the brain effect is less than with eating but since I am hardly getting stoned now I decided to skip the sups. I made them out of pure cocoa butter and the resin so you have to be quick getting them in or they dissolve and leak out. There is probably something that could be added to increase the melting point a little?

suppositories will not be good to carry once ounce doses of flowers

Boywonder56 profile image
Boywonder56 in reply to spencoid2

Well i keep rso in freezer ....that i use when apc/ adt/ life has done me wrong ...bs....and i get this from dispenery in newmexico.....and im no lightweight.....this shit will put u down....comes in A syringe.....a lil dab will do u .....ive guven some to friends.....they arent my friends any more....( kidding).... i think this is in the 90 percent thc ...i will send pic of label....i keep one on hand for my exit plan....

Heykm01 profile image
Heykm01

4th month on Lupron + Nubeqa. Operating around 90% (wife says 80). As Mateo said, Nubeqa reportedly “doesn’t cross the blood / brain” barrier.

I still have some fatigue. Push myself to exercise as everyone encourages here. Also helps to have someone encouraging you.

Izzygirl1 profile image
Izzygirl1 in reply to Heykm01

My husband just finished his 5th docetaxel chemo treatment and is on Nubeqa and 6 month Lupron shot. Was just diagnosed in June 2022. He has pretty extreme fatigue most days but he manages to do the stationary bike a lot. Someone encouraging you is the BEST! ❤️

Battle_on profile image
Battle_on

Our oncologist said he expects Xtandi to be phased out within 3 years due to its harsh side effects. Ask your oncologist if the smaller dose actually makes enough of a difference to suffer through the additional side effects. Personally, I would choose a higher qol today over a probably immeasurable increase in the effectiveness of the Xtandi.

Muffin2019 profile image
Muffin2019 in reply to Battle_on

What is going to replace it ?

Nubeqa22 profile image
Nubeqa22 in reply to Battle_on

my husband was on Xtandi when he experienced a TIA or mini-stroke! Doc switched him to Nubeqa 2 years ago. He is definitely fatigued, but a bad hip replacement outcome certainly compounded that. FYI, he was diagnosed nearly 10 years ago. Thankful for these drugs— side effects CAN be better than the alternative.

kapakahi profile image
kapakahi

This is probably ignorant and naive of me, but I've often wondered if speed drugs would help with the brain fog and fatigue I read about so often here caused by ADT. Caffeine (like in 200mg pills), or Adderall, or even an anti-depressant like buproprion, which is similar enough to amphetamine that it can cause a false positive blood test. Or all of the above. And maybe a blood pressure med for the hypertension these (and Xtandi itself, I've read) can cause? Just a thought. It's possible I guess that you'd still have the brain fog and fatigue but now with added anxiety and the jitters. I think I'd try almost anything.

RCOG2000 profile image
RCOG2000 in reply to kapakahi

interesting comment about stimulants. Dr Dorf at city of hope mentioned that to me as possible way to mitigate fatigue snd brain fog I have not pursued it though

Rocketman1960 profile image
Rocketman1960 in reply to RCOG2000

I live on hot coffee. it helps a bit.

RCOG2000 profile image
RCOG2000 in reply to Rocketman1960

yes. I went from decaf to haf caf and now full caffeinated

Lrv44221 profile image
Lrv44221 in reply to kapakahi

I don't think it is ignorant at all.

whatever works is whatever works.......lol

A good way for the brain to release endorphins (the feel-good hormones) is to walk or pump iron and anyway to get them released. I am going to research this.....

🏃‍♀️🏋️🏃

GeorgeGlass profile image
GeorgeGlass in reply to kapakahi

matcha green tea powder and lots of sauerkraut kimchi and salads. This won’t weigh you down. Try light yoga in the morning before a late salad and kraut kimchi breakfast. Use Tabasco or chilulu for flavor and mustard. Lots of vinegar. No oils.

Muffin2019 profile image
Muffin2019

Good for you, like your attitude fellow warrior.

Mrtroxely profile image
Mrtroxely

Look at the list of side effects on the packet info sheet.Look to see if what you experience are on there.

There are alternatives to xandi enzalutamide

With slightly different side effects that may be better

One of worst SE for me, was they got into my head.... I get dispairing lows often and no sleep for days.

It weakened me mentally as well as physically.

Maybe you could try other second line hormone treatments?

Rocketman1960 profile image
Rocketman1960 in reply to Mrtroxely

Insomnia is a problem for sure. Even when dead dog tired. I close my eyes and put myself in a happy place. Then pray I rest.

Roscoaus2000 profile image
Roscoaus2000

obviously each person is different I loved Xtandi, it filled me with energy. However, in a 5 km power walk I had a mild seizure and had to stop taking it as it passed the blood brain barrier. I had to change to Zytiga which I have been in 6 years. It makes me tired and I have a sleep for about 1 hr every day. May be ask to try Zytiga. You might be opposite to me.

GeorgeGlass profile image
GeorgeGlass in reply to Roscoaus2000

did the small prednisone pills help give you energy?

Stoneartist profile image
Stoneartist

Thanks to all for some very informative replies. Just need to say that I think I am very lucky with minimal SE from Xtandi - just the brain fog/fatigue - and fighting that just demands persistence, determination, and concentration. Anger in momentary and can be harnessed to these three - anger is a feeling - and gives energy!! I am doing well today - sweeping all resistance before me - must be that viking battle cry.

anonymoose2 profile image
anonymoose2

Thanks for sharing your dislike of Xtandi. Using that stuff is a MFer for the majority.

I’m assuming your on Lupron or other also?

Whatever the case it’s just an anguishing bitter treatment. But it works. In my case come February drug free for one year and here’s the dam part I’m still getting hot flashes about 4 times a week. Way better than every hour. Brain fog, nerve damage, memory issues, joint pain. Yes it’s a colossal BF with a 2x4.

Taking a walk in the cold help me on many occasions. With winter here depending on your location will help. Cheers NA Bud Zero. 🍻

The only thing that makes me feel better and brings clarity and focus is pumping iron. I get hot flashes while pumping so I just take off my shirt and keep on keeping on. I cannot explain it too well but I feel my old self when kicking iron's ass all over my basement.

in reply to

one more, one more…

I am always searching for a better way, if I can only find it I will let you know. Fight on, there is nothing more rewarding then building your own home. ❤️👏

harryb48 profile image
harryb48

Fight on man, mental attitude is half the battle. I've been on Eligard and Zytiga what seems forever and have to self check mentally every day! Best of luck!

SteveTheJ profile image
SteveTheJ

I'm having trouble understanding your point. As to fatigue, you can look at Provigil; it's helped me a lot.

babawinter profile image
babawinter

Just a thought guys... you can go to war, fight your disease, battle it every day. Or, you can change your terminology. I've chosen to think of my 7 year process a "journey." Every year, for the 7 years, the protocol I was on fails and I'm on to the next - that could be 7 fight loses; battles lost; or, one more example of losing the war. I've outlived the "Stage 4, advanced, aggressive" prognosis that came in 2015 by thinking of it as a journey and on that journey, always learning, adapting, fine tuning and researching. If you choose to avoid the losses that occur in a "war," dig as deep as you can into the evolving science and research, use this learning to ask detailed and intelligent questions of your oncology team and adjust your lifestyle to accommodate the ongoing side effects. When you have detailed discussions with your team, they will give more detailed information and potential alternatives and suggestions. Finally, fatigue, brain fog and weakness are all part of almost any treatment option for those of us with advanced disease. These can be mitigated by exercise, fresh air, spending time with friends, staying engaged intellectually and having purpose in your life. And, being Norwegian, get yourself to Tronheim, Holmenkollen or Lillehammer to watch your countrymen/women kick butt in the skiing world cups - There are big world cups in Beitostollen this weekend, hop on the train, soak it all in! Get out and do what every good Norwegian does... cross country ski in a peaceful forest setting! Don't be angry, be activated.

Stoneartist profile image
Stoneartist in reply to babawinter

Nice thoughts - thanks - its just that brain fog stops me doing what I want to do, and therefore I must go to war with it. Its all about having a higher purpose when brain fog rears its head - it quickly disappears when I have more important things to do than succumb to it!!!

Explorer08 profile image
Explorer08

Is your picture above of Boromir?

Stoneartist profile image
Stoneartist in reply to Explorer08

Havnt got a clue - it just expressed how I felt yesterday

runtrails profile image
runtrails

Punch it in the throat. You got this!!!!

gsun profile image
gsun

I started building my house a few months after my DX. I am on Lupron and Zytiga. I worked on every day for two years. No problem with fatigue or brain fog. A year after I finished, I started building a smaller house on the property. During that build, I got the fatigue and brain fog. Made many mistakes that had to be corrected. But I'm almost done and no more!

Stoneartist profile image
Stoneartist in reply to gsun

Same here I started building 1 year before diagnosis and have been going ever since. Done some amazing stuff - but now the fight against brain fog is necessary - had a productive day today!!

Carlosbach profile image
Carlosbach

For me, I was working on a project with my son and grandson when the fatigue kicked up a gear. I would be going well and then it was like i hit the wall. My decisions were shitty, my thinking wasn't linear, and the umph would go out of my energy. I eventually told Eric and Jude that when I had to stop, I had to stop immediately or I would screw something up. I also gave myself permission to take a quick nap. Still struggle with periodic fatigue, but much less severe since I added resistance training back into my routine.

PS - My wife's family is Norwegian. Please send lefse.

Stoneartist profile image
Stoneartist in reply to Carlosbach

Jepp - seems we must expect that this will get worse - thats why I am fighting to find the best way of managing it - great input - thanks

Scout4answers profile image
Scout4answers

If you are not doing a serious exercise program I would start immediately. Weight lifting (resistance training) and aerobic movement every day.

I have been able to counteract the side effect of ADT and Zytiga for 14 months so far. Not only that, you will just feel better physically and especially mentally.

Stoneartist profile image
Stoneartist in reply to Scout4answers

Ive been on ATD for 3 years without any problems - and I am going into year 2 with Xtandi. So far the excercise that comes from housebuilding has kept me fine - but noe I think I need to increase on that front - thanks

Scout4answers profile image
Scout4answers in reply to Stoneartist

let me know if I can help

I too had much rage my first three years with APC . I finally capitulated and stuffed that anger away . My wife didn’t deserve a mad guy around the house . I’m told that pc loves those bad hormones produced by anger. Get exersize, get out into nature . Both can help . I Had what I called a reverse steroid rage from no t . Sam-e somehow helped me out .. I had worked off of anger my entire life . Now im on Thc and keeping more mellow . Good luck !

CAMPSOUPS profile image
CAMPSOUPS

youtube.com/watch?v=LByiVlc...

maggiedrum profile image
maggiedrum

I can't add anything on Xtandi or the other therapies discussed here, except I have been on Adderall (amphetamine salts) extended release for over a year now. I take two a day, except most days I forget the noon dose and can't take it after 1:00 or it is hard to get to sleep when I want to. I tend to be more sensitive to meds in general.

I do know that amphetamines can improve your mental cognitive capabilities, and certainly combat fatigue. That comes with some downsides though. At higher doses it is addictive. And there is evidence that the benefits decrease over time and this is dosage dependent so some ask for more and more, and then, like with opiates they get addicted. It is similar to methamphetamines which are a destroyer of hundreds of thousands of people around the world. Meth addicts definitely progress to higher and higher doses to get the same "high".

I do have more energy and motivation when I take it though. It can make you jittery and can actually harm cognition and decision making, for some, if taking too much or even small amounts for some people. It is helping me with my fatigue (which is not due to any PC therapies since I am not on any - sigh). It helps with my life-long depression and the loss of motivation and increased fatigue. I can do projects that are my best therapy where I couldn't force myself to do anymore.

This should be discussed with a MO to make sure it is appropriate for anyone. It could definitely have serious SE's for those with anxiety or heart problems and other existing medical problems. And certain emotional issues too.

bglendi53 profile image
bglendi53

I've always said that if the Cancer doesn't kill me, the treatment will.

cancerfox profile image
cancerfox in reply to bglendi53

I told my general practitioner "if I didn't get treatment for it, my prostate cancer would probably kill me. But during the treatments, because of the side effects, I almost wished that it had." Even now, while off the ADT and the radiation treatments completed over a year ago, I still have lousy lingering side effects. 🦊

Kanka99 profile image
Kanka99

After completing Provenge in October, my psa shot up from 1.1 to 4.3 (Provenge doesn't lower psa). My onc put me on Xtandi; I have been on it for just over three weeks. In that short period my psa has dropped from 4.3 to 0.2 in three weeks. I experience what I would consider as minor side effects such as tirednes, and some sleeping problems. Evidently, we have different tolerance for the available therapies; which make sense since the pc affects each individual differently.

garyjp9 profile image
garyjp9

Fight on, brother!

Teacherdude72 profile image
Teacherdude72

I have started my 8th year since dx with G9 aggressive.Now on monthly Lupron and Nubeqa at this point for 20 months. Energy level low but hit the gym 5 days a week. Do woodwork, gardening, and stay active, travel often. Sleep 10 hrs.

Soon will be 75 and feel great. Writing my second book and blog infrequently.

My suggestions are: remain positive, be as active as you can, choose to be active, Be positive! Oh, live your life; it's the only one you have

You may also like...

Lost the battle, but won the war

informative posts and reply's to my posts. I will keep all of you in my prayers as you continue...

AlanMeyer's Favorite Doc on The War on Natural Therapies

Right now I am following Dr. Nalakrats GTP (Gator Treatment Protocol)...Nal's treatment is...

War on drugs -- license to torture Americans in pain?

with pain now but is this another thing I need to fear in my journey with prostate cancer? Is...

We lost the war, but won many battles🌷

some pain the last few weeks, but we were able to keep it down so he could enjoy friends and...

RIP Manny - 5 years after diagnosis another brother loses his war at 55