Just wanted to say hello and give my background: diagnosed 5 years ago (2014) as stage IV, with extensive bone mets. Gleason 4+5 in the tumor, 3+4 in the rest of the cores.
Been on ADT starting with Bicalutamide, then adding Lupron which dropped my PSA to 0.01. When it started to rise again I was given a choice between Xtandi and Zytega (from a truly awful oncologist, who gave no guidance, just told me to choose within 8 days -- he's long gone!).
Been on Lupron, Xtandi since 2016 and my PSA is 0.27 and my testosterone is 47. Looks like I made the right guess!
At my July appointment both my local and Moffitt oncologists agreed that my outlook has improved from at most 5 more years to at least 10 more years. Not to shabby for a 70 year old! Really screwed with my financial planning, though.
Have to get a job now, as I've been living off a reverse mortgage and I can't stretch that out to cover the additional years. And, since I freelanced most of my life, I get minimal Social Security and therefore get "special assistance" on my Medicare Part D. Currently my total drug costs (premiums and co-pays) amounts to about $67 per year! Once I get a job it will be around $15,000 due to the cost of the cancer drugs (Xtandi is around $11,000 a month US retail).
My biggest problem is doctors who treat me like shit because I'm terminal. Had one urologist so abuse me I talked to a big time law firm who declined to take the case because I could not show physical harm -- how do you quantify someone telling you, four times, "Well, you know you'll be dead in four years!" And his treatment of me went down hill from there, but no physical injury.
Doctors focus on the mets -- I swear I could walk into a doctor's office with my head under my arm and they would say, "Oh, it's the mets!" Agonizing soft tissue pain: "It's the mets;" feels like I broke a rib: "It's the mets" (it was a cracked rib but even the radiologist who looked at the xrays carried on about the mets and totally missed the cracked rib). My oncologist explained that "no one expects someone in your condition to be alive."
It's hard enough to fight this all on my own (family has always been uncomfortable around me, even my sister's grandson and his boyfriend decided not to live with me, in part, because when I die my estate won't be big enough to make it worth their time). Having to fight doctors on top of it has been horrible. Fortunately I have standard Medicare with full supplemental insurance so I can be a consumer and take my business to whichever doctors I want without an insurance company getting involved.
So: no chemo, no radiation (except on tits to keep them from growing) and, most importantly, no pain. Never had any and now that I use CBD oil I don't even have arthritis pain.
But: my dick has shrunk so much I now have a foreskin -- took a while to figure out that I had to deal with it every time I pee to not make a mess. And being in rural Florida, and old and poor, there is zero interest in me sexually. Never did fuck around much but I do miss the intimacy. Haven't had anyone hold me and kiss me in years and years.
That's enough for now. I need to get on with my day. Trying to keep positive and just focus on the task at hand so I don't think too much about anything.
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Miccoman
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Welcome, and that's great news about the life extension you've been "granted." This is a compassionate group of great guys who look out for one another. Tall_ Allen is one gentleman whom we look to for advice in different situations. Make use of his encyclopedic knowledge base!
I will conclude my 18 months of Lupron in December. I had radiation back last fall. It's hard to imagine being ADT as long as you have. Eighteen months seems to be the new standard for "long-term" hormone therapy.
Yeah, the dick shrinkage is a bum drag. Nevertheless, just be alerted to the just-released pair of FDA-tested ED devices -- Giddy and Xialla. They may help to achieve erections again, because they both apply strategic pressure without constricting blood flow. You can use them both at once, since they don't conflict positionally.
Your libido can be bolstered, even with low- or even zero-T, with positive self-talk, and with erectile functioning on a restorative path providing positive feedback.
If you do not get any response from these devices, consider an implant -- the permanent ED solution.
I am curious why you would be ending Lupron after only 18 months. I was told I would be getting Lupron (22.5 mg Depot) every 3 months for the rest of my life and that they would just add other drugs when the current combo stops working but the Lupron would be a constant. I was told this by both a local urologist and a research oncologist at Moffitt Cancer Center in Tampa.
As far as I know I will keep getting Lupron, even when I go through Provenge immunotherapy (up next when my PSA gets to 2.0) and I know they plan on it continuing through Zytega, which will follow Provenge.
Through diet and exercise, I've lost 20 pounds in the past couple of years with at least 20 more to go so that when I get to Zytega (which comes with Prednisone) I won't look like the Pillsbury Doughboy.
Congrats on losing 20 lbs! On the 18 months, actually the oncologist prefers 24 months, but urologist is ok with 18. Unless six more months is shown to be a definitive improvement and extends my life substantially. But O bet they cannot demonstrate that.
cIame in with Gleason 4+3, PSA of 18, no mets. I can see with your mets how they want you on Lupron indefinitely.
With the mets, it's stage 4. Terminal. So had to cross out that on my advance directive. End Stage is what most people think of as terminal (including some docs) but it's just another name for stage 4. Actually they said 10 to 15 more years, now that I'm 5 years in and still responding well. So that puts me 80 to 85, which is plenty long enough for me (I took care of my parents until they passed in their late 90s and no thanks, they were just sitting around waiting to die).
I've always been more of a mental jo guy. I can still get a little stiffy if I think about it, but there's no cumming, so it just feels good and I eventually get tired and bored, especially without a partner.
I don't have $150 to spend on anything much less a way to keep a hard on that I have no use for. But thanks for the input!
I totally understand. It's a challenge to buy stuff like this (Xialla is $50; Giddy is $100).
What I've strangely neglected to tell you was that I have a homemade device that's ridiculously simple, called the Loop.
It has protected me all through ADT -- because this device has been 100% reliable in its ability to assist/create great erections, and maintain them for long periods, on demand.
My T-deprived libido, which would normally collapse or go to "sleep" during ADT pretty quickly, stays awake now. Libido CAN exist without any T.
By increasing blood flow with one or more of these new devices (all three devices can be used simultaneously, I'm pretty sure), men will now have formidable ED weaponry that we have never had until now!
For the Loop instructions, if you wish, for free, go to my first post, " A big hello to everyone..." and scroll down aways, til you find the link to the Loop document. You make this device yourself very quickly.
Libido needs the reinforcement of reliable erections to fully function. This is how my libido is holding uo wuth no-T. Tadalafil daily low dose protects the lining of blood vessels to a degree.
Good luck! Keep in touch. I know it&s hard without a partner.
When they open back up, for registration, CancerMatch.org looks to be a good place to possibly find a new partner.
Any feedback of yours from trying out the Loop will be kept in confidence unless you state otherwise. I'm trying to get men here exited about these new devices, and be willing to share their experiences with them.
They've had me on Xgeva for the mets. Started at 6 mo, then monthly for a year, then to quarterly, now back to 6 months between shots. At the 6 month interval it's Prolia for my osteoporosis.
They are worried about bone death in my jaw so they backed off since there has been no change in the mets and bone scans show little uptake anywhere. I actually think most of the mets are from injuries suffered from an extremely brutal childhood (dad started trying to beat the queer out of me when I was 5).
Thought the Lupron was to help keep PSA & testosterone down.
I am so sorry your father did that to you. I hope that you have been able to work on processing through that trauma in the years since then. I know that would have traumatized me.
As s man just recently realizing he is gay (interesting timing), I'm spending time in this group particularly, trying to make sure, with a (hopefully not too) repetitive schtick, that everyone who is concerned about his ED should be aware of the enormous potential these simple devices have to treat mild, moderate, and severe ED. The fact that they can be combined -- Giddy, Xialla and the Loop -- is an unexpected ED godsend.
Any one of these devices can assist/produce erections. When combined, as two or all three devices at once, we have an ED-weaponry set-up like you wouldn't believe.
This is actually happening -- a radical step forward in ED treatment that doesn't suck, like our VED friend. Completely bizarre and unnatural., in my estimation. Floppy erections, and cock-rings holding in a fixed amount of blood til it starts to go cold. Hmm. Tempting, but...no.
I can only speak from Loop experience how good Giddy and Xialla, together or separately, are going to be for us.
Still, these devices may not, will not, help everyone. Some of us will, sooner or later, need an implant. Most importantly, libido needs to be kept engaged and healthy for as long as possible.
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Lupron - How do you do it...
