As the title indicates, I've been taking Erleada + ADT for 16 months now with no end in sight. I've been battling cancer since 2001, not only Prostate Cancer, but Colon Cancer, Melanoma and Renal as well...(I've beaten all of them except PC) I have been tolerating the side effects relatively well, and I'm doing well. But as most of you know, PC is a disease that drains you (and your spouse). It's the "gift" that keeps on giving. I'm told that Erleada is not a cure, rather just a life extender, and I take it till it stops working. I know that there's a lot more bullets in the gun after Erleada, but I'm tired, no, I think the word exhausted is more appropriate...I guess I just need a good vacation or something. I've been taking drugs for so long that, although I'm happy, I'm definitely not the same man I used to be. I exercise daily, weigh the same amount I did when I graduated high school so long ago, and I eat fish, veggies, fruit and chicken if I have to...no sugar, boring. Surgery, radiation, ADT, Chemo, Drugs, have led to ED that is just as bad, so that's a "bonus" side effect from battling prostate cancer, there seems to be no cure for that, just injections, or more surgery. I'm still 55 years young, have a great spouse and kids...but I'm numb inside and I know it's the drugs talking here.
Enough of spilling out my grievances...I'm not looking for a pity party...but I am searching for the cure to PC, I guess like all of us are on this site. My question is, have any of you beaten Metastatic Castration Resistant Prostate Cancer been cured? Or do any of you know someone who has beaten it? If so, how? I have great doctors, and go to Johns Hopkins, so I think I have a great team, but there's got to be a way to beat this and get off the drugs.
Message Gourd Dancer...he has beaten this beast....as for the ED, someone posted of a nerve implant surgery in Australia that has had, as I recall about a 70% cure for ED....
Someone I know is going to Skype with the surgeon and find out prices....hopefully, he will post...
You're tired brother...and a real warrior....beating the other cancers....While exercising, get out into nature for several hours a week...it is good for overall health... see below:
Sorry for my late reply, and thank you for your input. I'm printing out the information from the link you provided on the ED Cure and taking it to my Urologist next week. He's really progressive on these things, and I'm interested in his input. Hopefully, the person you know that's going to Skype lets us all know what the cost is. I'd fly anywhere to fix the ED problem.
I think you have to look at it as a disease you manage (like HIV), rather than a disease you cure. There is no known cure yet for metastatic (M1) PC. Unfortunately, the most prevalent side effect of all advanced hormonal agents is fatigue. I talked to a doctor just yesterday about his experience with modafinil for daytime sleepiness.
It was for another patient - I was just there as an advocate. He decided against it. Another patient I know tried it, but found it prevented napping, but he still felt fatigued. He preferred to take a nap.
My definition of "cure' is to manage prostate cancer so well that we can reach an average life span with best possible QAL. An average life span of American male is approx. 78 years .You are an inspiration to people like me who are having difficulty dealing with just one cancer...still trying to embrace fatigue as part of life. BTW, exercise does reduce fatigue.
Hi, thank you for your input. I agree with your comments; I know there are people on this site that are younger than me (I'm 55), but it's a long time till 78. Just a few years ago, I was chasing my wife around the house for all the love I could get, but the surgeries, drugs and fatigue have created chaos in my psyche. My brain sends signals all the time, but there's no one home down south. It's a bummer; and the tri-mix injections work (sometimes), but I still struggle with the routine...it's like hey babe, hold that thought...I got to go to the fridge, grab a needle...etc. Why did the disease have to take that away from us!!!
CRK...we have to liberate ourselves one by one from all longings once we have got metastatic prostate cancer....in fact we have no choice. Acceptance is the key...
sooner or later, we have to accept the reality of our new life and seek happiness in other areas..This disease transforms us greatly. Accept and Adapt is my mantra.
That’s been my biggest regret, not having the ability to make love to my loving wife. I am 58+ diagnosed on 9 October 2017.
It sucks big time especially when we now have all the time in the world as my sons are all grown up and chasing their own dreams and accomplishing their goals. Grandchildren help us to stay young at heart, but the yearning for love down south is more stinging than all the needles in the world.
Your goal needs to be to die from something else. It seems like most people succeed in doing this.
It's actually not a good way to go. I posted a Quora answer by a urologist about a year ago here. It caused a lot of controversy at the time. If you have an interest you may want to search for it.
As per your request: "stop reading my posts please. Thanks" I did not read your post.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 07/11/2019 8:24 PM DST
Power to you! If you can get any "downhill" feeling that makes you feel better. This disease cripples the head as much as the body.
My Onco said there was a company (about 10 years ago) that took T-cells and "taught" them to target Pca cells. It worked, but the company went bankrupt. Too few buyers at $1m a pop. And the need to follow up with another million to deal with mutations. Apparently another lot in the pipeline, but they also will be in the million dollar market. This is a huge problem - if someone does find a cure, only millionaires could afford it. The sorry truth is that most of us will never get to use any real cures because they are all going to be super-expensive.
There do seem to be many success cases where they caught the problem early, and used all natural fixes - raw food diet, turmeric, selenium, Vit D, shiitake mushrooms, Vit C IV's etc. In other words they removed the causes and boosted their immune systems enough to get the natural killing up to scratch again. I don't think these guys use this forum. A pity, we can learn from them. Westerners tend to ignore these cheap fixes because of the health care systems that pay. But they also miss their one chance to escape.
Alas, once we start on medications, the immune system gets greatly weakened by all these poisons. It never gets strong enough again to kill the last of the cells. Raw foods etc. can help to increase the natural kills (and thus reduce medications and extend life), but we really are trapped in the "big machine" and need the medications offered for our survival. If we can afford them. We all wish it were otherwise.
And we wait, wait, wait, hope , hope, hope, for the magic bullet that costs less than $1m.
I agree with the idea that there are other ways to fight back our PCa.
Although there is no formal protocol for 'supplementation', there are avenues to find certain groups or families of plants / natural sources to boost the immune system.
I would state that there are cases that have progressed too far to hope that supplements might make a difference.
I believe in SOME cases, if you are 'early' enough in the state of disease, that supplements can make a difference.
The supplementation I refer to is about our own immune system - specifically the 'white T' killer cells and the overall gut health we need to maintain for optimum health.
I'm referring to mushrooms, curcummin, pre/pro-biotics, quercetin, vitamins, super greens and varied compounds found in specific food / beverage groups that work together to provide a better 'recovery' environment.
Anti-inflammation is a key concept to finding tools to fight back.
I've also had to find ways to improve my sleep - which has been a HUGE problem for me.
I have created a cocktail at night that works well - even for the insomniacs.
IF you can't sleep, try something like the following
- Indica / THC tincture - 1 mil @ 25 mg. (could include some CBD ratio much lower than the THC value).
ALL the above are taken about an hour (or more) before lights out time.
If you need more, take an extra capsule or play with the variables a bit.
I awake in the morning, reasonably well rested, without a hangover. Just need a coffee and about an hour to fully wake up and start my day with energy, after a hearty breakfast.
P.s.....just read more of your posts....and i ..like you am numb inside....hats off to ya and you courage to battle on with what youve been dealt. I for one think the mental dealings...are as bad or worse than the p.c....i was told if i did nothing in the beg. Maybe 2yrs....they said to think in 5yr increments on meds....so im 3 yrs into that....i like you seem to be lucky to have a fir me caring gf.....but man do i miss that feeling.....what i dont want is to waste one day fighting this shit when i couldve been having a better life...only brothers in arms understand...peace ..b.w.
...man do I miss that feeling also...now that the PC is knocked back, I've been concentrating on getting my mojo back...I do the Tri-mix, but it's not the same :/. btw; all things in the mojo area are not covered by insurance...makes no sense because the lack of mojo comes with its own set of problems. And, I have been fighting the BIG C for quite some time...my body looks like I've been through a knife fight, and unfortunately, there's so many internal parts that don't quite work the way they once did...but I'm alive
Hi Olivia...I started on Erleada right out of the gate; March 2018...as soon as it was approved, somehow my doc got it approved through insurance (I have Metastatic Castration-Resistant PC). My oncologist is Dr. Antonarokus out of Hopkins and he’s been closely involved with the studies...so that helps. So far, it works great, but I worry about insurance on a daily basis, the drug is so expensive. As for Zytiga and Xanti, I have not taken them.
Olivia, I’m not qualified to answer that question. But a totally unqualified answer is that they all work basically the same way, but are different at the molecular level. One may be better than the other, but I don’t think there are any studies that compare them. My Oncoligist chose it for me because he thought it would provide the best response in my case. So far, it works for me :). But I can also tell you that the side effects are many, but tolerable for the most part
i am 4 yr into stage 4 pc. rp,rt &adt erleada got me to <.06.the PROpel trial is looking good to inhbit pc dna resulting in cell death. hang in their .advances in treatments are coming soon
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