This is a report on my experiences with estrogen transdermal patches with benefits and pitfalls to date.
first a bit of my information. I’m a medical super responder ( it’s rare, you can google super responder ) stage4advanced prostrate cancer patient. I’ve authorized both my oncologist and palliative care Dr specialist to do “ papers “ on their patient experience / treatment with me. That being so, everything mentioned here might be / probably will be somewhat different for non super responders. My PSA was 1400-1600 when DXed and my initial diagnosis very grim and immediate entry into inpatient hospice urged , that I had very little time left to live. That was 6 years ago this past October….I've been on xtandi , lupron , zometa ever since.
So, as time passed, I slowly physically degenerated….. lost my mobility a couple years ago ( I’m in a wheelchair ) , have substantial neuropathy waste down, have small vessel, white matter brain damage ( minor , so far …from xtandi ) , diabetes/ vision impairment and many others. My psa stays at less than 0.10 so far. Recent body scans show a slow progression of my already body wide extensive Mets.
In recent times I began to spiral down / auger in , mostly from treatment SEs. As recently as 5-6 weeks ago I was in a state where I was asleep 16-24 hours a day ( waking to pee every 25-40 minutes ) . I was spiraling down , in a groggy state mostly unable to become fully awake or make myself get up off my couch or bed and even go outdoors, let alone get in a vehicle and go somewhere. It was dire and scary / alarming and progressing.
Based upon reports I’ve read here on the group, a while back , I asked my palliative care specialist to try transdermal estrogen patches. Initially she said NO ( emphatic ) , but a couple weeks later she called and said she had conferred with some of her peers and decided to let me try them. ( no doubt a bit spurred on by the juicing up of the research papers they are going to do, as well ).
I started with the lowest dose 0.025 mg patches. Basically a micro dose. This about 4 weeks ago. I’m starting my 5th week today. Immediately, within the first 24-36 hours , my sleepiness started to dramatically disappear . I’m awake now , mostly normal ( still with a slightly groggy element ) . I get up and get out, I’ve been out of the house more in the last two-three weeks than many months combined preceding the patches. Also the patches have a psychological element, they are a mood elevator as well. A very pleasant and handy mood elevation. there are other minor SEs, so far, breast further enlarging, finger nails and hair growing at amazing rates, ……. Shopping for designer handbags on Amazon ( rotflol …. Kidding about the guccchi ….maybe )
Alas, all that glitters is NOT gold. Estrogen causes me serious constipation / bowel movement - bowel blockage issues, I haven’t had a normal bowel movement in weeks. Estrogen causes me to have serious bowel blockages which are very difficult to manage and will make you terribly sick with sepsis and cause a scary trip to the emergency room if you let them go without clearing them for several days.
I love the benefits of the patch. For me, they are life changing in a beneficial way. I would REALLY hate to have to give them up. Currently I’m managing BMs manually, every couple days, with mom and or sienna. I have an appointment on December the 2nd to review the patches with my Palliative care specialist. I’ll know more after that meeting. That’s it for now, this my report on transdermal estrogen, I’ll report more if something interesting comes up.
Thank you brothers and sisters,
Love you all, hang in there
❤️❤️❤️
Picture: me out of the house on my etrike ( horns on helmet ) thanks to estrogen. Having lunch at a sidewalk restaurant near my house, at a table they kindly keep set up for me on my etrike.
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Kaliber
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I am happy for you all the good they give. Hopefully they can resolve the BM issue better than your current fix. Glad you able to get out and about again on that e-trike. Hopefully your not terrorizing the neighborhood with that horned helmet (images of MadMax in my head).
Thank you brother, I’ll be meeting my palliative care Dr on the 2nd of December. I already use sienna to accommodate the narcos and the plugs they generate , I suppose I can add in accommodations for the estrogen if need be. It’s most likely wouldn’t be something long term, ….. I’m in the instacroak territory now as it is ( prolly cardiac but stroke equally likely ) . The estrogen is pretty important to me, it’s stopped me from arguing in …. That’s a big deal. Chunking more time on. Ima gonna run outta work-a-rounds and cheats one of these days and it’s gonna smack me. Rotflol. Hope I’m up tossing down a couple of cold ones , up in the restaurants, when it smacks me. That’d be the epitome of success lol.
The little kids think I’m from a comic book or cartoon and enjoy my appearance, adults far more wary and cautious. lol
This picture with my cold weather trikeing gear on.
That's quite the gear choice. Never seen anything like it. What's cold weather for you? I am riding to my Lupron shot today and it's a high of 45. My cold weather gear is quite a bit different 🙂
Well ….. rotflol …. I guess most people don’t consider mediterranean climate zone cold. Here it’s just under 60f and gentle raining. No wind. It’ll be in the low 60s mostly. The problem is that if any wind at 70f or less happens, my eyes start tearing up like a river flowing. If I don’t keep the googles and lower face separate, my breath fogs my googles. It’s all necessity driven. Had the same gear combo for my Harley too, this time of the year.
I’m sitting in my jacuzzi , my banana tree jungle looking healthy, nothing cold days yet, this year. Banana trees hate cold days lol. Most of my yard is north of the equator foliage. But many / most yards here have balanced north ( of the equator ) and south plants. Many yards are awash with flowering plants right now.
It makes a lot of sense. What part do the horns play?
That's great weather but I guess we all get used to what we have if we get out, or we don't and stay in. Me I always prefer to get out unless there's heavy rain or ice in the roads. It's all about the kit, as you clearly have shown.
I am well. Still plugging along trying to keep this body running as long as I am able. Not dealing with as much as K though so he keeps me humble.How are you?
Feeling my oats today. I was having a lot of pain and had some slight rises in PSA, so I caught the anxiety train for a short time. Fortunately, scans are clear, and PSA has stabilized for now.
Turns out the pain is accelerated degenerative disease from ADT. So, no new bone bets, but still getting to experience increased levels of joint pain. My primary care doubled my dose of effexor, which has helped with the pain and almost eliminated my hot flashes and crying spells. Feel like getting on with life today!
That's good news ultimately. Glad to hear. Life has thrown you some loops lately, glad to hear your still fighting. Not like we have much choice, the alternative really sucks.
Sorry that you haven't been so good lately, pain certainly does drag you down. I hope that you begin to pick up again soon and that you are back to your old self, in the pool with those girls, practicing your Latin.
Effexor is a brand name for Venlafaxine. It can be prescribed for anxiety and depression. My doctor prescribed a low dose for me following a death in my immediate family. I read some posts on this site where some of the guys were having success taking Cymbalta (duloxetine) for hot flashes I asked my Dr. about switching meds. He recommended that we stick with the Effexor, and see if a higher dose would do the same for me.
I used to suffer with several hot flashes a day, but the increased dose of Effexor has reduced those dramatically. Some days I don't have any flashes at all. The increased dose has also helped with pain and anxiety.
For me, the big downside is that the med does make me drowsy. I take it before bedtime to reduce the fatigued feeling, but I do tend to nod off occasionally.
I am on the same (venvaxavaline 75mg/day) for hot flashes. For about 2 years now. Greatly reduced frequency and the intensity when they do come on.
My sister has the same dose for her hot flashes. Funny I'm the old hippie in the family but my sister gave me that look when we shared our treatment info. and said: "do you feel anything different"? Nah I said and she said "me too" with a kinda disappointed look on our faces lol.
Another signal! A report from the use of transdermal estradiol patches in the wild. Bravo. And a continued success and improvement! Look forward to more reports.
I have a hunch that if I ever saw you battling a bear, I would probably need to assist the bear! I'm really pleased to hear that you're feeling better. I hope you'll keep sharing your journey with us. Wishing you all the best." 👍👍👍
Thank you for sharing your journey. It is helpful to know there are options which work, but are still not very popular with oncos. I was wondering if you have tried Miralax or Meta Mucil for constipation? Also where do you get the patches from?
I do have Miralax and Metamucil top on my list. I already accommodate the plugs generated by opiate use with sienna, I’ll probably find a new daily accommodation combination that fits both as well. Great ideas buddy.
My estrogen patches are prescription from my Pallitive care Dr specialist. I get 4 pacs. I wear mine on my upper glutes switching patch to patch , left to right, week to week.
❤️❤️❤️
a lot of times getting transdermal estrogen is like pulling teeth. After a “ point “ tho, comfort outweighs other considerations when you are already teetering on the edge anyway.
We ….my palliative care Doctor and I, are watching for changes in my spiraling into the drain, mostly. The changes have been dramatic….. beneficial. My microdose patches is only 0.025 mg….it might be hard to evaluate in my body. In any event, at this point we aren’t doing any labs for them.
I apply mine on my upper glutes , switching from left to right , week to week. Mine stay on perfectly in the jacuzzi. I do have the special clear covers for them but haven’t needed them yet.
Of course there is highthened risk of bloodclots and cardiac failures when using estrogen in men, but there can be a point where trying them is the less of the evils. Like in my case.
Yes that’s why my MO about a year ago denied me getting E2 patch. I knew at the time he was working on outdated intelligence but i let it go while i tried to bring up my E2 by limiting my low dose letrozole (aromatase inhibitor) via my super high T injections for BAT. This time after i “TEMPORARY “ failed BAT i had to go on extended ADT to bring PSA back towards/near undetectable I told him i really need to grt the patch and i told him the “PATCH” trial just finished with great results and no adverse events. So finally got what i wanted.
Luckily I had the BAT option of high T or i would have had to correct my MO and i did not want to do that.
Good to hear your report. The cardiac risks are minimal when using low dose patches which bypass the liver - even the high dose tx in the PATCHES trial showed better cardiac risk profile than usual ADT. I don't know why this isn't used more. Good luck.
That is an interesting aspect of patches. Possibly something to do with the historical early use of estrogen as a treatment tool before new generation drugs came along. I know that ive had three previous oncologists that wouldn’t prescribe them and even now, I’m supposed to understand that this is a trial just to help make more comfortable - improve my qol.
just fyi brothers: hijacking and side threads on any of my posts are not only encouraged but are great when they are or promote socializing and/ or camaraderie for us croakers here.
Yea , I did that myself …. I wanted the thread to focus more on the transdermal patch info …. I can side track easily lol. It’s interesting but the patch more the important subject.
So exciting to read your report on the positives about your use of the patches. I’m also anticipating an update on which bag you chose, are you going with a shoulder bag or a clutch?
Sorry to hear about the GI motility issues. My wife suffered with those while taking opiates for pain. I tried helping her by feeding her bamboo (it works for pandas), but she always has to make up her own mind, so I don’t know if that would help or not.
Awesome that you are getting out of the house, and that you have place close by to grab a bite and a couple of brews.
rotflol ….. well now that you mention it, I do have my eye on a nice little Coach brand, alligator pattern, green clutch / shoulder bag , just say’in ….. 😂😂😂😂😂
Yea I use daily Sienna to manage my opiates …. , I can see possibly adding or switching to Miralax or one of the great fiber choices … this to handle both sources of dangerous plugs. It’s worth it to find an avenue of success …. The benefits are nearly priceless.
No kidding, I thought I was a goner, I could hear the creaky hinges of the hospice gates. I’m sooooo thrilled to be out and about again, it’s great buddy. I’ve done more miles on my etrike in the last two - three weeks , than in many months previous to this.
I don’t have shopping centers close, nearest one about 1.7 miles. But, the etrike is city street worthy , in bike lanes ( kinda looks like an Vespa from some angles ) and can travel 30 miles @ 18mph max. I’d estimate there are between 60-80 interesting stores / shopping centers within striking range of the e- trike. The echair is completely different and would be dangerous in bike lanes but being lighter and much smaller, it transports , on the Bruno carrier, much easier. They are both good in their own way. I live near the CSUF AG university. On the north border exactly. Great hike and bike trails converge at the school, and campus is beautiful. The north side of Fresno has beautiful parks in every neighborhood.
Small view of the commons at the AG school on a recent weekend from the etrike.
Well, I’m not a fashionista like you and Doc, so I will refrain from weighing in on your behalf. Plus, I can understand wanting to draw the eye towards your Rubenesque ankles. I’ll see what I can find in your size
Omg, rotflol….. I almost choked on my coffee when I saw this. Laughed my hinny off. Unfortunately absolutely hits the mark tho. .😂😂😂😂 this is really funny buddy, I love it. Even the attitude is kewl. The hammer says it kinda looks like me too. You da man.
Its early turkey morning big guy …… I’ve been rereading some of the posts up above. Esp between you and the leafy ones ( tree and lettuce ) ….. boy , sometimes it seems you and I are on such parallel paths in a lot of ways at similar times. A lot of commonality. ( yikes lol ) Anyway, I hope at least some ( if not all ) of that upbeat energy you had two days ago still exists today. we do have things to be grateful for it being thanksgiving and all. If we can appreciate them. We’ve beat the mess this far and we’ve got family / loved ones with us.
I just wanted to send you out a big fuzzy ehug today buddy, ima hoping you have some of that glow left ( or at least can find some ) today …. overeat all you want , what we got left to worry about like that anyway. lol. That’s it I guess, …. spread the ehug around there , if it seems appropriate. We’ve got this ( successfully reached holiday milestone ) to use as a foundation for our sprint to Christmas, lol. I gave myself a little xtra comfort meds this morning , …. seemed fitting on a holiday like this … maybe you can reward yourself a bit there too ? I’m looking for a big turkey tryptophan hit as well. lol It’s all good.
Despite the big hits and hurts of the past 5 years, I have been blessed as well. I’m no longer a full of youthful optimism, but I can still see that the glass is at least half full.
I admire your determination and spirit, but I really respect the role you have assigned yourself on this forum. You really bring the best out of people, and your way of being positive and accepting that we’re sometimes pissy is extremely important.
I have to bail, taking a holiday meal to my elderly parents (about an hour away). Hope you and the hammer have a great day
I'm finally back. Busy few days for an old fat man with stage IV cancer, but well worth it. Had a great time preparing and feeding a complete thanksgiving feast for my folks. Some days they only eat 7-800 calories apiece, but the smell of the cooking turkey and dressing must have whetted their appetites. Dad finished off two plates of food, and some desert. Mom finished off a full plate, some desert, and still had a busy fork while I was clearing the table.
Home on friday, working with the wife to prepare for our delayed t-day. Then yesterday we our two of our daughters, one of them's partner, and five 20 somethings for dinner. Great time, and had a blast introducing the kids to the old version of Apples to Apples. Lots of laughs all around. All in all a good recharge for the old emotional battery.
Hope you and the hammer had a good holiday, but more importantly, I'm hoping that you've had a the opportunity to clear out that blockage. Got to get that system adjusted so that you can stay on the e-patches.
Wow , you had a busy time lol. Sounds like some great family time and fun holiday QOL activities. That’s good stuff. It’s just the hammer and my self here. This year she bought one of those brined turkeys for the first time ever, it was surprisingly tasty. Possibility the best tasting Thanksgiving meal she has ever cooked. She’s already put out / up most of her Xmas decoration too.
The plumbing is a work in progress. I’ve got video contacts with my Pallitive care doc to tomorrow and my oncologist, two days later. Probably get things set for the holidays in those meetings. Staying upbeat.
lol … it’s adjustable actually. If the magnetic horns are curved back, it RAM mode . If the horns are forward facing, it’s bullish mode ( great fun on the AG school ) and if the horns are turned facing each other, it Shogun mode.
An interesting note : if I wear the horns facing forward, fox squirrels are totally oblivious to me on the scooter. I can drive right up to them and they totally ignore me. If they are turned back facing, the fox squirrels scatter up trees. ( this on the AG college full of lives tock, cows and bulls. ) . Guess they don’t see bulls as a threat. If I pull up to the dairy operation barns , horns forward, and let out a loud Moooooooop. The ladies get pretty excited, almost to the point of jumping the fences. When I’m zooming around the campus on student days , I have a handlebars horn that emits a loud Moooooooop. ( among 18 other sounds ) I’m pretty sure I hit a few of the streaming streams those evenings when the students are off. lol
Thank you buddy. Some, of it is good medical info, some frivolous fluff meant to distract and or entertain, ramblings of a xtandized brain - lupron fogged lol. Sometimes just thinking about the lint in your navel or the winds wafting around your lounge chair in your backyard …. Sometimes those are the best thoughts for guys like us. Just letting go of the ugly stuff for a bit …. Sometimes that’s the best medicine of all.
Welp , etrikes are a big field of machines. The one I have drives like a motorcycle because I can’t walk or pedal a bike. But I think you walk fine and probably ride a bike too. In your case I’d suggest a etrike that has pedals. You can drive them motorcycle style like mine, but better you can pedal them for a massively more fun experience. You don’t need effort pedaling them, rotating the pedal crank casually with your feet provides that shove in the back forward power that speeds you along . Riding one of these makes you feel 15 years old again. They are literally thrilling. Some advertise 30-70 mile range at 28 mph. Most fold in half or better for easy transport. I also suggest the fat tire type for off-road use and a 750 to 1000 watt drive motor for amazing power and acceleration.
There are thousands of models, but to get you in the ballpark, google the Mooncool etrike. It’s inexpensive compared to many and has great features. The one I owned was a Motan. I’m not promoting any brand , just mentioning a model as an example of what I’m suggesting. My particular current etrike is a ewheels ew-38. You can google all these models and get the gist of everything. Always look at places selling them like Amazon and see which ones sell the most and have the best customer service. Amazon is killer for this kind of shopping. If you buy from Amazon, the etrike will be delivered to your driveway and even set up for you for a few dollars. If they sold 28,342 this past month and it has thousands of 5 star ratings , it’s most likely what you want. Etriking is amazing fun , especially for us old guys damaged by cancer . We can still get out and enjoy the outdoors sunshine and the wind in our hair. They take very little trouble, just recharging after a ride and most have the ability to carry a 2nd battery for double the range and riding experience. If you get the fat tire type and ride off-road, you might have to give your tires the puncture proof treatment. Easy to do yourself, in expensive at a local bike shop.
I love that you are yourself on whatever your riding. Your much bolder that me in deciding what to wear while riding. I have been surrounded by unicorns and other funky costumes at cyclocross races but for me it's all about comfort and sweat control.Luckily, I normally only have a little discomfort the night of the shot. The bike riding before and after seems to help IMO but I might just be fooling myself. Who knows but no changes planned at this time.
No doubt, we have that here as well. I love having a fenced in yard but realize anything outside by fence is the wild west. My Great Pyranees mix makes it very clear to all that pass,he is on guard. It's genetic. I keep telling my wife to appreciate it despite the annoyance it puta to the neighbors. It will take a bold intruder to come in on my 2 dogs. In reality I don't think of it much and love this area. It's a small big town or a big small town. Either way I don't live in a bubble about how people are suffering lbsed on the very visible homeless, but I also don't feel the least bit threatened while riding though town.
Glad to hear you’re keeping up the good fight. My gastro doc eventually solved the constipation problem with a drug called Linzess. Might give it a try.
Hi Kaliber, this is great news, I am so pleased that you are feeling so much better and you are actually getting out and about. Interesting about the side effects, I hope that there is a remedy for the constipation, that can be very painful sometimes.
As for the other side effects, you're going to have to careful that you don't get your pony tail caught in the back wheel of your E trike. Isadora Kaliber Duncan !
Rotflol. Thanks buddy. Constipation becomes bowel blockage if not attended to. And I only have a few days before blockage becomes sepsis and requires an E.R. Visit and even emergency surgery. Humans must have BMs or they can’t eat ( no room for more food ) and the festering fecal material being held inside becomes extremely dangerous. I can tell you that sepsis sickness is one of the most intense sicknesses a person can experience. I’ve thought of calling an ambulance more than once over sepsis. It’s very ugly.
Maybe I should braid my hair to keep it out f trouble, rotflol.
some story and thank you for sharing. SE’s are a real downer then SE’s of meds to help SE’s. I know we are not unique but a pretty heroic bunch nonetheless.
That’s right brother …. it’s why I share these issues and how I fix them. Brothers can be alerted to things that can happen with meds and discuss them with their medical crew if they do. These aren’t new issues. Back in the early 20th century , 30s - 50s , the opiate pain med capsules the doctor gave you also had a laxative combined in the same pill.
APCa sucks , I agree that the guys that face this do it heroically. Having other guys here in the same boat , to talk to , helps sometimes . We all get it.
Thank you for sharing your estradiol use! Sounds like it helped you a lot.
I've been using estradiol gel for 8 months now, along with 6-months of Orgovyx, and I have no hot flashes. I'll get my DEXA scan next month. I'm taking it primarily to stop osteoporosis, because I had low back fusion surgery recently. Also, my PSA is now down to 0.03, from a high of 10.
What is your estradiol level now?
Your dose of estradiol is very low, compared to the PATCH Phase-III study, where those men took 3-4 patches simultaneously, with each patch delivering 0.1 mg/24 hrs. Those doses were 12-16 times greater than yours. There were no reports of increased constipation.
I also take morphine for back pain, which I found does cause constipation. Your opioid use is more likely the cause of your constipation, IMHO.
The PATCH study found that high-dose estradiol could effectively and safely replace Lupron injections, and have the same PSA control as Lupron ADT. Also, the metastasis-free survival probability was essentially identical for estradiol patch ADT vs Lupron ADT. Hot flashes were greatly reduced on estradiol patches, and men increased their Bone Mineral Density (compared to a decrease in BMD for men on Lupron).
You mentioned that estradiol causes increased blood clots and CVE's. The 14 year PATCH study found no increase in blood clots or CVE's when using estradiol patches at high-doses. Perhaps your doctor is thinking back 30 years to when men to oral estradiol (DES) and did have increased blood clots,. That happened because it took a first pass through the liver when ingested orally. The transdermal delivery method with patches (or gels/creams) skips a first pass through the liver, which reduces the risk of clots and CVE's, compared to oral delivery.
Hi Bob …. my circumstances are a bit different than many here. We aren’t doing any lab work on my estradiol levels, I’m not getting the patches as a treatment as such. Similarly, it’s not related to my PSA or any thing.
I’ve been taking opiates for more than 6 years now, about 4-5 years ago , I was able to balance out the constipation SEs of the opiates with daily laxatives. I’ve been regular , without constipation issues , for those many years.
I’m in deep palliative care , better looked at from the prospective of keeping me comfortable / kind of hospice , rather than treatments. When DXed, I was considered terminal at the time and urged to immediately enter inpatient hospice. I turned out to be a super responder which changed up everything. We are so rare ( super responders, ….. less than 5% to possibly 9% of all oncology cancer cases ) , almost no one has experience treating us. lol. One of my oncologist has called me the luckiest patient she has had in 50 years of practice ….. my current oncologist says my continuing to persist and be here is literally miraculous. Told me that only a few months ago. When a table full of prominent specialists gives you the “ dead duck “ diagnosis and strongly urges immediate hospice, absolutely no one expects you to still be here …. over 6 years later. It kinda feels like they don’t know what to do with me lol. For sure every day I don’t wake up dead , it surprises them. lol
The ADT I’m getting is intended to shrink my massive met load to keep me comfortable, ….. opiates aren’t considered long term treatmentment, but here I am with 6 years of opiates and counting. I have to have them increased periodically to overcome the tolerance effect as well. What are they going to do…. take me off them and watch me writhe in pain. Rotflol. It’s a quandary for them.
So back to the estrogen patches. I’m being microdosed with estrogen to see if it will improve my daily quality of life. A little bit at first, maybe more if I benefited …. more next to see what is optimal for me. I’ve been spiraling down, sleeping 16-24 hours a day…. Not able to gain full consciousness / awareness and being depressed. So far, the patch has been a miracle of its own. I’m fully awake now and my mood considerably improved. I can actually get dressed and get out of the house and do things. I’ve done more outdoors trips and activities in the last 4 weeks than I did for probably the previous 15 months combined. Unfortunately that nasty constipation is an issue. I’m actively trying to modify my opiate constipation / laxative regimen to accommodate the estrogen patches as well. Initially ( the first week ) my BP shot up to 220/110 but I’ve tamed it back to normal adjusting my BP meds …. Now I just have to find a “ fix “ for the estrogen bowel plugs and I’m good to go ( pun intended ). Rotflol
I may have mentioned this before, but the PATCH study showed that men can replace Lupron ADT with estradiol ADT, with equivalent safety and effectiveness. It may be an option worth considering down the road (so to speak...). I know of one patient who's been using estradiol gel for more than 20 years, with excellent PSA control.
I currently take 60 mg of Morphine daily, but I'm trying to slowly ween off of it. How much do you take?
I have seen info on the group that estrogen can work as Lupron does and was even used in early aPCa treatment before stuff like lupron. I’m kinda hoping that my patch might benefit my lupron and add an extra hammer on the bugs. Not expecting it and not why I’m using it, but …. Wouldn’t hurt my feelings if it did add in some benefit. Rotflol. It’s crossed my mind, but I suspect at such low levels it might not do much.
I’m currently taking a total of 60 mg of Vicodin daily , and I can add to that for break- thrus if I feel like I need it. At my discretion. I might change to methadone or morphine because I have a high tolerance for hydrocodone. Morphine is the best overall because , unlike most opiates, it can be titrated up indefinitely and continue effectiveness. Can’t with Vicodin because it contains nsaids that will kill your liver. If you use too much. Maybe a different alkaloid will break thru my tolerance better.
If you don’t need the morphine, if your pain is small / nonexistent then its way best to wean off of it. Save its effectiveness for when you really need it later on.
In my circumstances, addiction or not isn’t relevant. My instacroak circumstances make worrying about “ all that “ unnecessary. lol just making me comfortable is my teams only concern. I’m on the palliative registry, and have a palliative care specialist assigned to me. Looks young enough to be my granddaughter rotflol. She is very bright and actually gets directly involved in my care and comfort. Love them.
I take a mixture of morphine immediate release and morphone extended release.
The results of the PATCH study reported this year focussed on 1000 men who were MO with advanced PCa. They will report results in 2025 on men with M1 metastasis. Stay tuned!
I got mine from Amazon …. This because they bring it to your driveway. Most are already assembled with putting on the mirrors or a basket remaining to finish. Additionally, if you don’t like it or maybe it arrived broken , just call Amazon to come and get it , from your driveway, for an easy refund. Speciality bike stores are starting to sell them. Remember, if Amazon, save the box and packing materials to make it easier for Amazon if you return it. Like with everything on Amazon, you always shop the models that have sold the most of them and have the best customer reviews.
If you are mobility impaired, like me, the red etrike is a good choice….. if you can pedal a bike ( pedaling not required but beneficial exercise. Effort expended can be varied from good workout pedaling to zero effort pedaling. )
4 days later I'm sneaking into your thread here. It kinda ruins the spontenaity but what the heck ha.
This is great news. Many have said so in the thread. It really is. Didnt know you were out of it that many hours out of 24 hours. It really is great to know you can get out and about. I almost think with the area around you that you described getting around on a E anything is probably better than driving. People watching while sippin a couple beers and some munchies amongst the outdoors and people here and there is high up on my pleasures so thinkin same with you.
Do appreciate too keepin it sane here for us all.
Good to see tree, carlos, j-o-h-n as always and other brothers here in the thread.
I'm doing really good myself too. Up and down. Up and down. But the Up's are great and on the cancer front I cant believe how well I'm doing. I might be a super responder to Pluvicto ( thats what was said to me ). Time and the completion of a study will be able to better determine that. The talk before was that I might be in the top 10% of responders but at last appointment said I may well be in the top 5%. I said yea I've been thinking about this. I might end up on the cover of the hospital's magazine lol. I said I have had thoughts I might have to change my approach to my remaining life lol.
Brother Kal just want to say great to hear of your good fortune. Hope you and the Hammer had a warm cozy Thanksgiving. Belated E-hug to you guys.
Great to know you are doing well! Thank you for nice news. It helps a lot to know there are fighters here You guys the biggest helpers here with emotional support for new members.
Thats fantastic news Camps. Glad to hear that Pluvicto is working so well for you. I guess I can stop worrying when I don't see your name pop up in my feed.
If I'm down I can at least say something like "not feelin great I'll catch up with ya later--and dont worry its not my cancer its the cyclic vomiting".
I guess someday it will be the cancer but anyway send a PM anytime (:
Not to worry if you missed that long winded post that was here. I took down that long reply I made because I wanted to keep this more about you buddy. Seemed a lot more appropriate this way. Love you guy.
A bit confused I am lol. But anyway no need to concentrate on me or have it about me I'm just kinda babalin here lol. Taking full advantage of your invitation to hijack your thread lol.
Seriously your estrogen treatment is really great news and is of prime interest to many. Actually me too except I'm in a pretty good place and dont want to rock the boat. I'm chicken ha lol. Unless like you my Oncologist were to bring it up.
I put in some good estrogen patch and etrike content, that was enough from me. Need to let you’se guys fly with the great social and camaraderie stuff too. Makes it all great stuff for the brothers.
Man , this is the start of another holiday season …both of us are here and comfortable / well enough to be able to still appreciate it . We have our loved one/s , we’re good to go ( that sounds cringy huh lol ) . Shoot man , how good is this. I think both of us really appreciate the opportunity in “ all this “. Probably better than most citizens out there. We can be stoked that things are on our plus side buddy.
Alright brother , ima cooking some clam spaghetti sauce, try’in to get my clamy on lol. Talk to you on the flip flop.
I'll see ya for dinner. I'm havin a cravin for clams/spaghetti lol. Sounds Umami brother.
Yea all that. The opportunity yeah it falls in with the opportunity this gave me/us to have a greater appreciation for pretty much all things (that might sound cheezy too lol) that I probably would have skimmed over these past years. Sounds conceited but I'd have to say my "warmness guy factor" giving and receiving has increased. If there was anything superficial about me its pretty much gone and buried.
Ya know its pretty crazy really. October was my 5 year mark. This is when if I survived this long I was to be for sure at the end or in some kind of transitional la la land lol ( at dx 3 months to a year to live. if I make it a year I might make it 2 years. If I make it 2 years I might make it 5 years. beyond that . well.).
I think of those that went before me/us. Some of the brothers with similar dx and burnt thru same treatments as me. I've had a longer survival than some of them. I didnt think it would turn out that way.
I'm very lucky with positivity. I've actually tried to analyze it sometimes because it astonishes me. Don't know where it comes from (from my mom?).
I was looking for a text a few months ago and found an unrelated one that was my sons notes from one of the appointments he came with me on. It was the appointment before the Pluvicto treatments began. My son excuses himself by saying he has to be pragmatic and asks that question: where are we at in this, what can we expect in the coming future? The dr's response: Pluvicto may or may not work, benefit might not be too long, next will be Cabiztaxel, possible trial and or hospice. I saw those notes from almost a year ago and couldn't believe that none of that stuck in my brain. Seems every time I am offered a treatment I just feel on top of the world. I guess cause the alternative isnt too good lol. When I was in my early 50's visiting my parents my mom mentioned that I was always one to stop and smell the flowers. I thought about that a few days after I came home and concluded she was right about that. I was by now old enough to see that what she said was true. Anyways, I can really zone out or go to another place or something. Or Im just always there lol. Well ok enough of that I'm sounding like I'm my own shrink ha, lol.
Well man lets raise a cheers (you know me I'll spark a bowl) to how far you and I and Randy, Tree, Carlos, and I'm leaving out a lot of names but anyway how far we've all come.
I had a good summer. Made 2 seperate 3 1/2 hour drives to central Iowa to visit family and friends and stayed 2 nights each time among also just lovin life at home with wife and son and his family livin close by. Doin little projects in the garage with the door open. Too damn cold now lol.
Now I wrote a book. Mine wanders too much though ha.
Brother Kal you keep truckin. I'll do my best not to be a stranger here as the holidays are coming.
Yes buddy…. This is exactly what I’m say’in about you. You have to have that positive attitude , IMHO, in order to look ahead and fight . You are the perfect example. It plays a big role in keeping things going.
Just as important it reinforces our relationships with our loved ones …. Keeps them from tanking from worrying and depression. Our loved ones key off of us, ….. it’s easy to withdraw feeling sorry for ourselves, but it does emotional damage to everyone around us that loves us too. Worse it brings us down and for some they quit fighting and just give up. Of course ultimately it’s an individual choice , a personal choice but I like your upbeat way do dealing with all this.
I hit 4 years in September. Feels good after the negative prognostications of the medical folks at diagnosis. My wife and I moved this summer, and we love our new place, and I'm comfortable planning to be around for awhile longer.
One of my brother's in law is dealing with stage IV kidney cancer. He's pretty doom and gloomy, so he asked me how I always seem to have something to laugh about. After reflection, I think that since I've passed the drs predicted life span of 18 months to 2 years I kinda feel like I'm in bonus time. Now its pedal to the metal commander.
Glad that you had a good summer, and that the move is working out for you. E-hugs back atcha
Too much good new here. No such thing actually. Really good to here of your move going well too. You had more than you PC happen. Pretty devastating had to be. Make some new memories in a new place maybe.
Maybe unfair in the scope of cancer but I think surviving this long has given me a lot of time to adjust. Wife and family too. Wonder if the next time I progress I'll get panicky again lol. I kinda dont think so. Brother Kal said something reminded me of a line I always remember from Scott aka wimpy, lulu.
I'm goin to slide into my grave sideways.
Good hearin from ya bro. A post of yours came and went beneath my eyes a month or so ago.
I was born in 55 and that year the life expectancy got males in the US was a little under 67. It wasn't until 1996 that men would live to be 69 on average. Damn! We're doing pretty damn good. Loved Lulu and his attitude (Slim Pickens). However, instead of sliding in sideways, I'm going in shredding on a mini!
I've been thinkin about the expectancy averages too. Im not as young now 5 years later. Maybe if I'm lucky the first number of my age will be a 7. I invision if so loved ones and friends might have a softer blow.
I digress rotflol.
Love it man. You got more brain cells than me. remembered my fetish, I mean my obsession, I mean I mean my hobby ha, ha. A place to go in my head lol. Shredding on a mini.
Kinda speakin of I think you said you like t-shirts with graphics I think. I found a site full of the old Rat Fink and Don what's his name's stuff. A bunch of same style on mini bikes.
Tower of Power to you brother Ron (guess I have a couple neurons left lol).
Yea just briefly my wife is totally sunshine every day almost ha.
She is though. So positive. Very in the moment. She lets it out sometimes of course but she has been really optimistic as well. Our son, daughter in law, grandkids all do as you say give me good times to key off of. Grandkids 7 and 9 dont know maybe. My son asked me about a year ago if I would be ok with telling them but I dont think he did. All my grandson seems to be aware of is "Ji,Ji sure is in bed a lot". lol.
Just a picture or 3 here of a recent dinner at my sons house. Kiddoes are reading us the birthday cards they made for us. Only a 20 minute drive now that we dont live in Chicago land.
Yea brother I'll be doin my best not to be a stranger. You know I love hangin with you and the gang here.
Had some delicious grilled saba (in this case Norwegian mackerel) complements of my son. Add a little soy sauce and some shredded Daikon radish hmmm good lol.
Looks like good times for sure Camps. Looks like a sweet gang. I know my grandkids can bring me up when I feel like it's all worthless. And, having a loving supportive partner is about as much as we can ask for. And, food porn always reels me in. Looks like some good eats (my wife is 1/2 Norwegian).
Glad I could draw you into some food porn lol. I have a bunch more stored in file for the quick draw if need be lol.
As my grandmother who was a certified genealogist (take that lol) said:" I'm Heinz 57". But although I cant recall the percentage now Norwegian is highest percentage of the several but not 1/2. Hmmmm. ha.
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