Appx 2 Months on Concentrated (7x) BIRM and 8 months on Xtandi....Xtandi side effects starting to win (again).

[greatjohn]

well...when I started Xtandi the first few months were okay..then came the leg pains and muscle aches and extreme fatigue...THEN, along came BIRM (regular strength at first)....and everything got much easier. Much more energy, less pain, and wonderful sense of well being...

now at 8 months into Xtandi...even with the 7X BIRM, I'm getting the leg pains...the muscles and tendons feeling like they are tearing, the fatigue and the weakness...I hope this will pass. I did get a several months relief from the side effects after starting BIRM. Can't wait to see what my next PSA is...

Just wanted to update those who are curious about my "BIRM journey"

John

p.s. I always have 2 to 3 hours a day of being energetic and feeling good...usually around 6 pm to 8 or 9 in the evening. The rest of the day...I'm dragging, but still doing everything...walking, gym, cooking, cleaning...gardening.

[NPfisherman]

Hang tough, man... I know you said scans looked better....keep us posted...hope you get to feeling better...

Fish

[joeguy]

How many months on xtandi before you started seeing the increase in side effects? I'm 4 months into xtandi and have the constant fatigue and brain fog, but I've had that since I started firmagon and eligard 2 yrs ago, so I'm not sure what drug is the culprit..... probably all of them

[Hidden in reply to joeguy]

All of them . Agreed

[greatjohn in reply to joeguy]

the fatigue (for me) and the pain (for me) and the weakness (for me) was greatly magnified after a couple of months on Xtandi. Before that I could on "just" Lupron (and I use the word "just" with chagrin...I could "pull" the energy from some hidden source....now...when it's gone...it's gone. The BIRM helped for a few months...but now it seems to be becoming less effective....daily naps are happening whether I want them or not....and going to the gym is becoming more difficult....Early morning seems to be my best time of day...the 2 or 3 hours (like now) just after sleep and a big cup(2 cup) of coffee.

John

[joeguy in reply to greatjohn]

I have heard several people mention pain after starting Xtandi....... wonder whats up with that? The only pain I have noticed has been the occasional pain in the area where my prostate once lived, but that has been going on since surgery a couple years ago.

[Hidden]

I’m with you in two or three per day.. keep rolling .

[Tjc1]

Well John i started smoking pot and

my leg pain and general fatique are much less. I couldnt believe it! I tried cbd for 3 weeks or so didnt do anything. My wife and other people tolde to get my medical card. I resisted but glad i did.

[greatjohn in reply to Tjc1]

I got cbd oil...and was using it all day and feeling totally loopy and incoherent. I don't remember a lot of pain with it...but don't remember much...LOL. Switched to at bedtime only and it helped with sleep...but then discovered after going on Xtandi and adding melatonin (20 mg at bed time and 10 mg upon my FIRST wake up to pee about 2 to 3 hours later)...I slept great. I couldn't handle the "loopy feeling" ...I take one hit of pot (as I did recently at a friend's house...and I feel no pain...but I can't even talk either.

TJ is your fatigue, etc...due to just (and I use the term "just" with reserve) from Lupron or are you on Xtandi or one of the other killer things they add to it after resistance? On Lupron I was fatigued and weak and in pain... but nothing like what happened after the Xtandi was added...Just curious.

John

[Tjc1 in reply to greatjohn]

That is with Xtandi started taking.it a little over a year ago. I dropped the dose in 1/2 and with the pot the pain left. Its funny when i got my first dispesary product it was a vape. I got home and me my wife took one hit each. BAM! we were just laying there pretty much unable to talk. She wont do it anymore but i got some good ole pot. Heck im back to being a pro at it. No more not being able to funtion. Some pot actually wakes me up!

[RayF in reply to Tjc1]

Pot is so much stronger than it was 40 years ago! My first foray back into thc was with edibles last summer. 8mg and I could barely talk! Tolerance builds quickly though.

[EdBar in reply to greatjohn]

I recall using Melatonin a few years ago and it really made me groggy the next day. You may want to be careful about piling on the side effects. I take Xtandi around 8:30 in the evening and sleep well most nights. I still get whacked with fatigue especially late afternoon but a short nap or rest usually helps me to feel better. I’ve been on xtandi for almost 4 years now and had to reduce the dosage as side effects seemed to be cumulative. My PSA continues to be undetectable so I was able to do that with the advice of Dr. Sartor.

Ed

[Kevinski65 in reply to EdBar]

I'm on 4 years too with Lupron and Xtandi. I take neurontin for foot pain.

[greatjohn in reply to Kevinski65]

I also take Neurontin. Not sure if it helps...

[Kevinski65 in reply to greatjohn]

If you have numb , tingling feet with neurontin, stop taking it and feel how bad they get.

[greatjohn in reply to Kevinski65]

I'm going to assume it's helping somewhat...and keep taking. I don't want to take any chances with "adding" more pain to the mix of pain I already. have...LOL.

John

[PhilipSZacarias in reply to greatjohn]

Hello John and TJC1, I have the following comments re CBD and THC. Some CBD oils contain a significant amount of THC , which is what causes the "loopiness". I used a 20-25 mg/ml CBD oil with less than 2 mg/ml THC had did not observe any side effects. Taking small amounts of THC (0.3 - 0.5 ml of a 20 mg/ml THC oil) at night might help cognition and alertness overall - I have found that a cup of tea or coffee in the morning dissipates the mild residual dopiness caused by the THC. This has been my personal experience.

I have also found that the sleep benefit of melatonin decreases with time and if I stop for several days, it returns again. It might be useful to try this strategy with BIRM.

I have read many times in this forum of people reducing the dosage of Xtandi. If I encounter this problem with Xtandi (when I start taking it), I plan to do the same and monitor the PSA closely...and as soon as it starts to rise a little to go back to the full dosage, and then reducing the dosage again. And repeating for as long as this lasts.

Cheers, Phil

[monte1111 in reply to greatjohn]

I remember the good old Thai Stick days. One hit and you couldn't walk, talk or drive. I've got some pot, but I'm too lazy to smoke it.

[Shooter1 in reply to monte1111]

Had better luck chewing it like Skoal, just don't spit.

[Hidden in reply to monte1111]

The king of Thailand one day in the 80’s declared the death penalty for all drug smuggling ...no more Thai-weed or Thai -stick... after that.... dap is dam near pure thc .. a couple hits of that is all anyone would need ...call a friend to smoke it with you. A friend with weed is a friend indeed..

[chascri]

What is BIRM?

[SeosamhM in reply to chascri]

Check this out, Chas: ncbi.nlm.nih.gov/pmc/articl...

[chascri in reply to SeosamhM]

Thanks, I guess the answer to my question is BIRM is an Ecuadorian herbal supplement. But after reading this article, which is way over my head, I don’t know whether it is something I should get and take or not. Is there someone out there who can give a laymen’s answer.

[SeosamhM in reply to chascri]

Right - I think there are studies ongoing....? Check out some of Great Johns and Nalakrats older posts and/or reach out to them directly for more information.

It’s all strange, though. I was approved for and will be undergoing the immunotherapy “Provenge”, but it’s sort of the same thing....indirect indications that it somehow works. but no direct indication like lower PSA!

An unwelcome maze.....

[rocket09]

Melatonin is supposed to help with metastasis ? I take 30 mg at night off and sleep well plus great dreaming . Hope things improve for you GreatJohn.

[Hidden in reply to rocket09]

It’s common from naturalpathics for cancer ..I take 20

[PhilipSZacarias]

Thank you John for your update re Xtandi and BIRM. Most interesting. I am presently on ADT only, but expect to start Xtandi or abiraterone within the year (being realistic). Exercising and being active is the best way to minimize the side effects of ADT. It is hard working through the fatigue sometimes but in the end it prevents it from getting worse. I also find that drinking black tea and coffee straight two to three times a day helps to reduce the sense of fatigue and brain fog. Tea for me is more effective. Drinking coffee 5 times a day is reported to correlate with better health outcomes according to a Danish study a couple of years ago. Drink the tea over and hour to get the most benefit (at least for me). Cheers, Phil

[PhilipSZacarias]

I should have mentioned that catnaps (10 to 30 mins) with a timer are also helpful.

[Beermaker]

I am on 6-month Trelstar shots (similar to Lupron), Xtandi every evening (half dose now of 2 pills per evening) and 20 Mg of melatonin. No pains at all. 4 Xtandi a night was way too much. At 2 I am often tired, and have chemo brain, and sleep 12 hours a night. But not pain. Good luck, Greatjohn.

[greatjohn in reply to Beermaker]

Thanks for your insight. I've been trying to stay full dose as long as I can. The BIRM really helped for a few months.

[Moespy]

Thanks for the BIRM update John. Appreciate you keeping us in the loop. I really hope your pain, fatigue and weakness improves and your next PSA test is a positive result!

Jim

[greatjohn in reply to Moespy]

Thanks Jim...that's the goal. Hanging on! I guess, from what I read, I'm doing well..since I haven't had to cut my dosage on the Xtandi back yet...still doing the 4 pills a day!

John

[Hidden]

John, thank you for posting this and I hope you will update us again in a few weeks. This kind of information is helpful, especially for those of us who are very curious whether we should be taking BIRM.

[greatjohn in reply to Hidden]

I just quickly checked your posts on your profile...and if you go on Xtandi with Lupron...by the 3rd or 4th month...you might find (as did I) that regular strength BIRM that you can buy from Amazon Or Ebay(buy 8 ounce bottle for saving $) will help with the side effects...which for me had become very bad. Fatigue, weakness...and general malaise. Anything that works for a while is better than nothing. I'm hoping even after more months of Xtandi...that it will kick in(the concentrate BIRM I'm now taking) ...and I'm assuming it is helping...as I have not screamed "Uncle" and told them to reduce my dosage yet...as is usually the case with Xtandi after 6 months to a year.

Good Luck.

John

[Hidden in reply to greatjohn]

I will soon be on cabazitaxel, Xtandi and Lupron via the clinical trial. I am pretty sure that my fanny will be kicked around by this trio. I finished 6 cycles of docetaxel on January 23rd. I recovered 2 weeks and then flew to Todos Santos, Baja. Being here in Todos and not being on anything but Lupron has made me a new man.....or at least made me strong enough again to do this upcoming trial.

[Hidden in reply to Hidden]

I met my wife in Cabo. Todos Santos is majical ... “ living it up at the hotel California”.... Buenas suerte on your next move... Paz

[j-o-h-n]

That's why you're Great John...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/14/2019 7:09 PM DST

[Kevinski65]

Better be careful with pot...it can cause panic attacks.

[Crabcrushe]

GJ, how much exercise are you getting in the A.M.?

Crusher

[greatjohn in reply to Crabcrushe]

We walk the dog..appx 3/4 mile every day morning and late afternoon...and 3 days a week gym at 11 am.