So, I'm well on my journey thru PC. I'm almost 64 and diagnosed in October of 2018 with a PSA of 11. Biopsy showed 3 sectors involved, level Tc1, and a Gleason score of 9. That was later downgraded to a 7 (4+3) after a 2nd look at my pathology slides by U of M. Surgery scared me too much so I opted for radiation and ADT. I got 5 high-intensity rad treatment, every other day for 10 days (Cyberknife), plus 6 months of Lupron. I'm now about 5 months into my 6 month Lupron treatment. I'll get another PSA test in a few weeks, hopefully getting a happy-dance number.
My most pressing issue is hot flashes. They are about driving me batty. I get them day and night. I toast up, sweat, and then get major chills. Back and forth, back and forth. My uro prescribed venlaxafine to curb the flashes. It seemed to help for a while, but the flashes now seem worse than ever over the past month or so.
Aside from being just plain irritating, they are seriously getting in the way of a decent night's sleep. Last night, I went to bed a little before midnight and rose about 6:30. I counted 6 hot flashes in that time, each waking me from my sleep. I'd wake to a flash, throw off my covers, then get chilled...and about the time I'm falling back asleep, here comes another one. Lack of proper sleep carries its own set of negative effects, which I certainly don't need at this point.
I'm no stranger to pot, and I usually smoke a bit before going to bed because it helps me fall asleep fast, which I appreciate. And no flashes for a few hours, at least that I'm aware of. I might just be sleeping thru them. But come 3am or so, they're back. And I'll have several more before rising.
My question involves whether anyone has gotten relief from the flashes by any combination of medical pot, CBD oil, THC oil, hemp or whatever. I'm not talking about curing PC with it. I rely on my doc's treatment plan for that. I just really need to get out from under these hot flashes. Am also interested in any other homeopathic treatments, vitamin regimens or whatever.
Any suggestions? Thx!
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LessPaul123
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I have upped my Venlafaxine HCL ER to 150 mg taken with dinner along with 540 mg of Black Cohish (Puritans Pride) and OTC Estroven "Sleep Cool & Calm" and this combo has really taken the bite out of my hot flashes. CBD gum is also worth a try. Talk to doc about this combo and see if he/she thinks it is worth a try.
Have you noticed that most of your hot flashes occur at night?? I'm preparing for a course of ADT and trying to cover my bases BEFORE beginning to minimize possible SE's.... NOT looking forward to this... but.... not too many alternatives.
My hot flashes begin around 7 pm and end around 6 am. First 30-45 days after shot did not have any hot flashes and now that I have lessened their frequency and impact it is not a big deal. My PSA is undetectable and the side effects are well worth that result. Note: My friend that I hike with each week who is also on Lupron has not experienced severe hot flashes at all. Everyone I think is different and there are many methods to fight the side effects.
Thanks Jim..... I am utterly freaked out about doing ADT as the "possible" number of life altering SE's is longer than my arm..... Still there is always the possibility that I could luck out and have minimal SE's as some folks do.... I forewent doing ADT during my potentially curative Tx period( IMRT) and now paying the price....
I did the same thing twice but the ADT was not really pushed at that time. No ADT after surgery 8 years ago and none after first IMRT to prostate bed 5 years ago. This time I started ADT 2 months before IMRT to the pelvic lymph nodes which I just completed Tuesday. The IMRT will kill the cancer in the pelvic area and hopefully the 2 years of Lupron will cleanup remaining PC cells in my system. Having said this I do not think you will regret the ADT regimen.
I expect they push ADT a lot more for those who are getting radiation Tx.... purported to weaken the cancer cells such that they are more susceptible to the DNA altering effects of the radiation.... In 20/20 hindsight I would likely do it had I to do it all over again....knowing what I know today....OR had it been explained to me as well as this forum has taught me.
That was exactly my regimen. Lupron for a good month before Cyberkinife radiation. Was told the Lupron weakens the cancer cells before rad. I get my first PSA test, post-rad, next week. Hoping, hoping, hoping for the happy-dance number.
Pulling for you... Just remember that the first reading is not the lowest generally with Radiation Therapy.... Nadir does not occur until quite a few months out.....
Your case is a great example of why I take NOTHING for granted with this damnable disease anymore...... most folks think of prostate ca tx as a " one and done" kind of a thing with NO idea that there is a fairly high recurrence rate even with the milder cancers..... I would have expected ,for example, that your luck would have been a LOT better..... Hoping for you that the ADT clears up the rest of the cells....you are a young guy yet....
Very early on I went thru the Rick Simpson protocol while on ADT. It didn’t do squat for my PCa. It did allow me to sleep straight thru till morning. I was not wakened by either hot flashes or need to p. Just before going to bed I’d take a full 1/2 gram of high THC content, Indica strain oil, sublingually (I squirted it on a small piece of pumpernickel bread to help keep it contained under my tongue).
I'm going to go about getting my med mj card shortly. I live in Michigan, so it won't be an issue. Were you a regular pot smoker before your PC diagnosis?
I suggest making cannabis cookies or alternatively brownies. I toast ( decarb, Google decarb marijuana ) my bud ( in the oven on a clean tray, 220 degrees for 40 minutes ) affordable less attractive mid grade is just fine, then pulverize it into a very fine powder ( use one of those cheesy $15 hand blenders ) ,sift it and mix it into the cookie mix. For one box of cookie mix or one box of brownie mix use between 3/4 to one ounce of powder . Yes that’s a lot but you only eat a quarter to half a cookie per night. Vacuum packed cookies last a long time in the freezer. Eating the mj makes it take an hour to hour and a half to get to full effect and it lasts most people 4 - 6 more hours after that. Eating it brings much different effects ( more desirable effects for sleep ) than smoking it and is better for you. Toss in the batter some chocolate chips , crushed walnuts or butterscotch bits for yummy variety. Make sure to use an indica strain and possibly a try a couple different strains since mj flowers are frequently misidentified or even misrepresented.
Start off with a quarter cookie and if you didn’t sleep soundly all night, move up to half a cookie and so forth. High grade mj cookies give off powerful characteristic odors that can perfume your entire house, vacuum packaging them and freezing them helps control the odor and preserves them indefinitely. Besides sleep benefits, many people experience pain relief benefits as well. Thanks.
Yayahahaha I like them too but every time I eat them I’m face down in the potato chip isle at 7 / 11. Yayahahaha eating right before bedtime helps with that
What Alice B. Toklas left off her cookbook was “ decarboxylation “ . They didn’t know about removing the co2 molecules from her product back then. Lots of people still don’t. Most people decarb in their oven , others prefer ( old school ) dry decarb by storing their bud for a couple of years to let it age ( me , but I do it both ways ). Flowers decarbed by each method produces slightly different but noticeable results. Like fine wine connoisseurs, experienced purveyors like the aged product the best. I sometimes oven toast a quarter to half a pound ,then pulverize it into a very fine powder ( fine sift it) and then finish it off with storage aging for 15 - 20 months. This produces nearly 100% of tha - thc conversion preserving the highest potential of cbd and cbn ) Air aging helps promote more of the little mentioned cbn alkaloid in cannabis as well. Cbn is sleep inducing and couch lock inducing... but like cbd , not a high inducing alkaloid itself but used in the presence of high levels of thc very additive and beneficial. For decades I did the cannabutter route for cooking , but it’s messy and labor intensive to make the butter . Even cannabutter can be decarbed for better end results. I find the cannaflour method much easier, adds some fiber in your diet and properly aged / decarbed , produces dramatic results that bring big smiles even in the most experienced consumers ( kicks your a$$ into the next country,so portion control is a must ). Yayahahaha yayahahaha
Just a pinch of the cannaflour under the tongue will do the job ... mix it into those small cans of premade chocolate icing , spread it on toast or donuts.... especially tasty blended into a jar of nutella... great for making those rolls of biscuits into stun buns ... dispense it from one of those aluminum shakers onto your pasta sauce ( like salt ) .... rub it into a meat marinade.... the possibilities are endless . Way better than using Xanax, Ambien , tramadol and more fun ( especially important for guys like us) .
What was the content of THC and CBD in the 1/2 gram of oil.? 1/2 a gram of oil could be a lot of CBD and THC depending on their concetration. The one they told me to use was 25 mg/ml of CBD and 0.75 mg/ml of THC.
It’s what it is. I spent several months in Lala land. All I can say is to obtain the highest level of Indica strain THC ingestible ( NOT smokable) THC oil.
The dosage regimen is to take a total of 60 grams. One builds up tolerance by starting out small and working up to a gram per day. This is for full extract, high THC content, preferably Indica strain cannabis oil taken sublingually
I’m in California and we are lucky here. The entire west coast , Canada to Mexico, cannabis is legal. You can just walk into stores and buy it OTC for recreational use. Better , more powerful bud is available from the Medical MJ clinics which still exist parallel to the convenience store sales. Here in my town there are 156 mobile deliveries sales businesses. Look at the fresh product on their web site, make a call, 15 minutes later it’s at your driveway. The selections are vast and products for every need exist ... both recreational and medical. Here terminal cancer patients like myself are often provided “ free “ cannabis products as a public service ( edibles, bud concentrates). If you know the right people.
You can grow nearly a pound of bud plus more pounds of plant product in a hallway closet , every 3 - 4 months and remember that ( like slaughtering a pig ) nothing is wasted except the squeal. Modern cannabis plants have good alkaloid content even in the leaves and stems and even the leftovers ( trim, stems, water leaves and roots ) make great bho, hash oil and Cannabutter. Search YouTube for “ k4nlz grow “ for four closet grow how to videos I posted about 7 years ago ( construction of the closet installed hydro rig all the way thru a forest of hanging- curing premium hydro bud ) It’s very easy , fun and particularly rewarding to have a clandestine closet grow. A 3 X 4 hallway closet can produce enough product ( including concentrates ) to keep most average consumers well supplied and sell off $500 - $1000 worth of high grade hydro product, every 4 months or so. Not totally free the first cycle if you buy the equipment but free every cycle thereafter and a handy way to make side cash to pay for all those munchies.
You could try megesterol acetate 20 mg --BID or TID and go from there...Estradiol patch .05 mg/day or the gel topically may help also.....Hope you find something that works...
I also wake up multiple times during the night. Either it's hot flashes or the need to pee. I never sleep more than 90 minutes at a time. I'm retired now so I don't have to get up early for work. I just accept this as part of my new normal and get some additional rest during an afternoon nap.
I’ve been on the 90 minute plan myself for over four years now . For the past 31/2 no visible signs or PSA.. so until the wheels fall off this ol jalopy I’m staying the course . Welcome aboard . I’m just the same as you Take care MarkBC .
whoaaaaaa. I saw your title and thought I must have written this post. When Dx I was only offered one treatment being PSA 1300+, Mets throughout skeleton. ADT, Lupron a little over a year ago. One 3mo and two 6mo injections. I started some Alkaline Therapy I read about on line and probably continue till my end. Prescribed the usual opiates that were able to make much of a dent.
I added CBD, then a little later THC, both to hopefully treat severe pain and they work wonders. Each seemed to tackle specific and different types of pain.
My Lupron hot flashes started after about a month and have continued.
They occur 24/7 but while annoying not what I would call extreme but unrelenting.
Nothing I have tried makes much difference. So, I dress carefully, have lots of remote control fans, light weight soft sheets and blanket. I'm prepared to do something pretty quickly to help me stabilize temperature.
It is pretty funny, if we can find any humor to this terrible disease, when I attend my monthly support group and see half the audience fanning themselves with the speakers presentation brochure.
There are some drugs that MIGHT help but I choose to do without.
If it's tolerable, suck it up and be ready to throw the covers off, but not so far you can't recover them quickly.
The latest battery operated 'stroller fans' help a lot. Don't be embarrassed, when people don't know why I'm using a fan-- I say "Blow Job". Sometimes, when my fan isn't handy--- my wife can be seen occasionally gently blowing-on my forehead during a hot-flash (I smile and say "it's cool") - this is just another form of the quintessential type of Indigenous Alaskan Hot-Flash Blow Job (IAHFBJ). It can be 45 degrees below zero, and I'll take my coat off during a hot flash - I call this a frosty.... The faster and colder the wind speed, the more readily the surface cools---- Use Physics-Fight back---- ***Marquis of Queensbury Rules*** Personally, I never fully understood why so many guys become so enamored with talking about oral sex.... I never really knew what a blow job (or a cigar job) was until Bill Clinton... Unadulterated BJ-talk might be both politically useful for Republicans and humorous but there's nothing funny about sleep deprivation: I'd take sleep deprivation very seriously if I were you.
Marihuana is a natural substance, it can be good for you (if properly dosed)-- and when you have cancer-- let them try to throw you in jail----(Mahatma Gandhi) I'd love it if this forum would concentrate on articulating the best- definitive THC-brownie recipe solution for those of us in need... CBD corporate-marketing can be so confusing these days. CBD seems to be an outrageously expensive [unnecessarily refined] product. When I was young--- here in Alaska, "full spectrum" pot was part of life - a lid (one ounce) was $20: it grows quite well here - The local favorite is called 'Matanuska Thunder Fuck'--- Some of us aren't buying the [Nuevo-extremely expensive] CBD marketing manipulations... CBD is part of the pot... pot is legal, pot isn't as expensive as CBD - and I get to have a guilt-fee buzz to boot as I drift off to sleep. (I'll swear to the authorities--- if it's helpful------ I'm dying of cancer, and it's only for the pain, it's all natural and it makes me smile) - so throw me in jail--- This is the conundrum that creeps take advantage of----
If conservative, republican farmers can have a co-op to finance farm equipment, why can't we have a co-op to finance fair reverse mortgages and reasonable health care (drug) costs? There are hundreds of thousands of us being diagnosed every year; millions of us are being squeezed and yanked by a broken system.
A guy with stage IV prostate cancer might spend hundreds of thousands, if not millions of dollars on pills, shots and bags of poison - liquating everything you own... until the money runs out. CBD? In my experience: there are too many creeps; continually, desperately trying to take unfair financial advantage of the condition we all suffer from... another example: how much should an appropriate 1/4 dose and/or clinically effective course of abiraterone acetate really cost?.... So, if I have some money saved up for retirement--- I should just give it all away? What happens when I run out? No more health care? I think Fox News can be entertaining--- how can a good republican sanction giving all of one's retirement-funds away to these liberal, battery operated toupee-d sod-busting Greenie healthcare snowflakes?
I was vulnerable---- My PSA= 2439 @ diagnosis April 2018--- ADT and Chemo combined can make it difficult to sleep - and this can be psychologically and physiologically devastating after each Taxotere infusion.... The corporate Standard of Care [diagnose and drug] healthcare culture put me on lorazepam--- like every other good pharma-droid patient.... a drug that is well known to loose it's efficacy for insomnia within 30 days.
Was I psychologically depressed? That's very likely, but the overwhelming aggravator/ cause was a lack of sleep. 5 days with no sleep after an infusion, - I was ready to strangle someone, and the most likely candidate was Nurse-practitioner Ratched - because she refused me even [5-pill-doses of Ambien].... stating that Ambien was addictive--- I guess that she ( and Pharma) would rather see me addicted to lorazepam.
Thankfully---
I found Melatonin [Pure Encapsulations 20mg] to be helpful... I started with a 5mg daily dose and worked up to 20mg/day. You take it just before bedtime; and 20mg/day not only help you sleep, but it fights your cancer as well. When experiencing a hot flash at night - get up and pee, turn on the ceiling fan, or give yourself a Blow Job--- (using your stroller fan)--- When I was a boy we called it Auto-Fellatio. Voltaire called it Satire.
Methinks many of us feel your discomfort, frustration and annoyance at Lupron side effects.
IMRT, brachyboost and ADT here. 1 Firmagon and 3 Lupron injections (3 mo duration each). Last (I hope) injection was in early May. Almost every side effect listed for Lupron gets a "check, yup, got that one, too" from me; from the emotional roller coaster to the obvious (and not so obvious) physical changes.
Re hot flashes at night. About every 2 hrs. Covers on, covers off, cool down, pee (frequency improving, btw), repeat. Not a restful or peaceful sleep at all. Combined with the Lupron induced fatigue/tiredness, naps are now a part of my day. I've tried as many home remedies as I can find (the thought of another f-ing pill or med drives me to distraction so trying to avoid going that route).
The only thing that has lessened, but certainly not stopped, the effects of Lupron is exercise. Yeah, I know, one cannot exercise prior to bed. But, exercise seems to make me feel more in control, more even keeled re emotions, and a more "natural" tiredness conducive to sleep. Not a gym person at all but I force myself to go; mix of resistance machines and elliptical/treadmill for cardio purposes.
So, actually my point is to thank you for your post. Pot is legal (for the most part) in MD. I'll give it a whirl. Find yourself with the munchies? The last thing I need is more wt! LOL
Estradiol patches did the trick for me, I was having severe hot flashes about one every hour, the patches, prescribed by Dr. Myers worked like a charm. Now I get them only occasionally and they are not as bad as they used to be.
Accupuncture didn't work for me, even though I enjoy it. Cannabis doesn't help either, at least at nightime doses that don't leave me grossly intoxicated and useless the next morning.
I find the gabapentin helps - for a while. I start 1 or 2 capsules, 100 mg each, per day. That keeps the hot flashes at bay for a few days or a week. When they return, I up the dose.
I stop at 600 mg because toxicity is common above that dose.
There are reports from urologists and patients that IF testosterone and PSA are well under control, THEN a single injection of Depot Provera 400 mg almost always controls hot flashes. I haven't tried that yet, but my MO is willing to administer it.
Off subject since I know you are not looking for another pill. Gabapentin also knocked out almost all hot flashes for me. I'm at 3 x 300 mg a day for neuropathy. Doesn't seem to do much for neuropathy but helped a lot with hot flashes. Heavy med that most will want to pass on.
Stage 4 Ductal Adenocarcinoma with mets to bladder, Lymph-nodes, multiple bones, and lungs. I've had cyberknife and I am on Lupron (every 3 months) Zytiga, and prednisone. Hot flashes are constant, and the bed gets changed almost every day from night sweats.
Cannabis is a game changer for me, and that was only 4-5 weeks ago. Smoked some when I went to Ohio for a wedding and my sons high school graduation. I was having debilitating nausea(dry heaves) and a lot of pain almost every night for last 5 months. I was at the point where I just wanted this to be all over asap. I just wanted to die.
The first time I ever used MJ was about 7 weeks ago. It was the strongest weed EVER and I was high for like 3 effing days. I was never touching that crap again...
Until a friend told me try his stuff, just a small toke. And bam!!!.. it was amazing, My nausea was gone in minutes.Some psychoactive effects, but more awake and alert with energy and colors are the bomb. And I've gain like 4 pounds(munchies)
For me the 'strain" of MJ was the secret. I use sativa every night, the names are Mai Tai and Chocolope. I was using a one hitter pipe/bowl until I got a water bong 2 days ago, its even better now, smoother and cooler hits.
No it hasn't gotten rid of my hot flashes, but they are way less intense. And I love feeling of being high..its way better thinking about pain, death and throwing up.
I am going to use it everyday that I am sick for what time I have left, screw it. let them throw my ass in jail(I live in Georgia)
I'm ten years older - it might have been different for me; in the early 1970s, drugs were part of a teenager's recreational repertoire. Smoking or eating organic substances were the most reasonable vectors. I went to Frisco, bought a wig and slept on Huxley's floor with Jimmy Carl Black and Frank Zapa.
I'm not suggesting anything that is illegal-- but sometimes laws can be unjust. Many States in our Union are controlled by creeps---
Not-including: the seven states and Washington, D.C., that have death with dignity statutes:
California (End of Life Option Act; approved in 2015, in effect from 2016)
Colorado (End of Life Options Act; 2016)
District of Columbia (D.C. Death with Dignity Act; 2016/2017)
Hawai‘i (Our Care, Our Choice Act; 2018/2019)
New Jersey (Aid in Dying for the Terminally Ill Act; 2019)
Oregon (Oregon Death with Dignity Act; 1994/1997)
Vermont (Patient Choice and Control at the End of Life Act; 2013)
Washington (Washington Death with Dignity Act; 2008)
I think with a little hope, happiness and humor--- you might out live the cancer - but don't be tortured by politics and religion: move---
My Indian name is 2439, luckily, I joined The Oklevueha Native American Church where the religious use of naturally occurring psychedelic alkaloids cannot be prosecuted--
Live Long, & Prosper -- or at least have a little fun on your way out
Oh yah Deano! I’m on board . As adult men with pc do whatever you want. F the police . I’m pulling for you brother . Glad that you’ve found some relief from the deluge ... I never smoked pot because I didn’t want to slow down . That has changed . Now I’m smelling the rose with much help from a natural source . 😎✌️
For me it’s a difference of daily enjoyment or not . Peace Dean . Kiss that beautiful wife, and make it count brother. That’s all I’ve got . Take it easy brother . If your ever out west our door is open .😂
Venflaxine did nothing for me. Gabapentin helped some, megestrol was better. I had to stop Lupron due to repeated renal failure. 60 full body hot flashes a day. Felt like I was on fire from the inside out. If my wife turned on the light it made me hot flash, I was literally that sensitive.
My oncology Pharmacist suggested I try DHA Ultimate. Even if it's a placebo effect, my hot flashes are shorter now and come less often. A little fish oil is supposed to be good for some other things too. I'm not ready for any more heavy drugs.
For me, while on Lupron, Zytiga and Prednisone for 9 months, I had terrible hot flashes/sweating which was completely relieved with acupuncture (1-2 times per week) along with certain herbs. I would imagine that results are improved depending on the acupuncturist doing the needling.
Lulu, are you able to separate the effects of RSO from all the other treatments you’ve been on? My early on original info on cannabis for cancer was largely inspired by the numerous videos of Dennis Hill and another guy who’s name I don’t remember, from LA who claimed total remission. I don’t believe that now. Obviously you didn’t achieve completed remission if I’m not mistaken.
Ok and good for you. Having reread you single post it appears that while you were diagnosed stage 4, you did not have distant metastases. Is this correct?
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