Well, at least my alliteration skills are still intact.
My poor husband is really suffering with hot flashes. Seven or eight a night result in low quantity and quality of sleep, so fatigue is a becoming a major factor. And the fatigue and frustration are affecting him emotionally as well. He's been getting quarterly Lupron injections since April 2017, and has tried various dosages of venlafaxine (Effexor) and Megace but they seem to be of no help. Before that, he tried Gabapentin but was absolutely miserable and "foggy" so quickly gave up on that.
My husband emailed the doc today and his reply, which I was very disappointed in, basically stated that we were out of options except to discontinue Lupron for a while. I don't consider that an option and DH doesn't either.
Would love some input from you "gurus" and those who've had success with other options, especially estadiol gel or patches.
Thank you!
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For me 10 mg megace 4 times a day and 2mg clonazepam and 20 mg melatonine at bed time works. 5-6 hrs sleep..Get up and pee. Then if achy 10 mg cyclobenzaprine and 400 mg ibuprofen for a few more hrs. Not all that normal, but works for me. Tried 11 different sleep aides with PCP that didn't work. Venlafaxin was a total disaster for me. lost balance, worse neuropothy, Eye sight from 20/30 to 20/200 in 60 days on 37.5mg dose. Have gabapentin on hand but haven't tried it yet. Only 900 mg non therapeutic dose for starters to see if I can handle it and then up to 1800-3600 mg/ day of not bad. Set up to start it for periferal neuropothy in hands and feet. We are all different, but this mix works for me... good luck finding something that lets you rest without knocking you for a loop.
Just wanted to say I also have good luck with clonazepam and melatonin. Last night I took 0.25 mg clonazepam (half 0.5 pill) and 3mg melatonin and slept for 8-9 hours getting up maybe once to pee. This was after yesterday's chemo treatment where the dosing of dexamethasone usually interferes with sleep. As I understand it, the clonazepam (and all benzos) make your GABA receptors more sensitive, so it should have similar effects to GAPApentin, except that your body can still adjust the amount of GABA that it makes naturally.
I've been on clonazepam for about 10 years, well before my cancer diagnoses, and since I don't use it constantly I've been able to stay at the lowest does of 0.5 mg during that entire time. I hope this is partly due to some peculiarity of my biology and that such long term success will also apply to Lupron and all the other cancer meds
I have tried venlafaxine years ago and it caused insomnia for me. It also has a very short half life so if you go off of it or even miss a dose you can get some pretty bad withdrawal symptoms pretty quickly. I wouldn't recommend it.
Seems like pretty verbose response considering it started with "just wanted to say.."
Have to wonder whether bladder discomfort/needing to get up to relieve this, may be eased by: a) psyllium husks and b) chia seeds
Both these readily available, natural and inexpensive.
Each needs soaking in some water for 30+mins, so they soak up the water, swell & become soft: then just drink ! Could try 2ml of each for a few days, to see what happens, b4 increasing to two such doses per day, depending on effect.
Hope that may be of interest, . . . . . and worth trialling for those with bladder discomfort at inconvenient times - like during sleep !
Men with prostate cancer cannot take testosterone, but they can be given female hormones to help better control hot flashes. In one study, 83% of men who were given estradiol (an estrogen) reported relief. Unfortunately, this trial did not examine long-term effects which could include cardiovascular side effects.2 As well, more than 40% of the men in this study experienced breast swelling or tenderness as a side effect of the estrogen therapy.3 Similar studies of men who were given progesterone (another female hormone) reported 80%–90% reductions in hot flashes. In these studies, the side effects included bloating and weight gain.1
Other studies have used antidepressants, in particular, those in the selective serotonin reuptake inhibitors (SSRIs) class in men and women with hot flashes. These seem to be well tolerated, decrease the number of hot flashes and may have fewer side-effects than additional hormone therapy.3
Tips for dealing with hot flashes:
Use a fan or air conditioning to keep your room at a cooler temperature
Wear clothing in layers so you can remove a layer when you overheat
Wear underwear and clothing made of natural fibers (cotton, bamboo) instead of synthetic fibers
Take a shower or bath using lukewarm water instead of hot water
If you sweat a lot while sleeping, put a towel on your bed
Use a cooling pad to help keep you cool
Drink alcohol in moderation, alcohol negatively impacts your body’s thermal control center
Put a damp towel in the freezer and wrap around your neck when you are experiencing a hot flash.
Lots of great tips here, John. Thanks so much. My husband already follows most of your suggestions, but the towel ideas are super.
Effexor hasn't been very effective. I just heard from the doctor and he doesn't prescribe estrogen ---- says the side effects profile is worrisome. So......Ugh.
We'll add acupuncture to the list of options. Thanks TA! I just heard from the doctor --- he won't prescribe estrogen ---- says the side effects profile is worrisome. I'm very concerned about the (unseen, long-term) side effects of poor sleep quality and quantity.
I think ronronHU can provide references about how transdermal estrogen does not have the same side effect profile as the pills, if you want his doctor to reconsider.
Thanks, TA! Ed (below) shared a video of Dr. Myers explaining how estrogen patches bypass the liver, so no enzymes are created that have adverse CV effects. And there have been a couple of small trials showing same. I'll touch base with ronronHU as well.
I tolerated my hot flashes and did not want to take another pill. Then they started increasing in frequency & intensity. (this was 14 months after Lupron started) My oncology Pharmacist suggested DHA Ultimate & my MO approved. I have just finished 2 good weeks-less intense & less often. Early results sure but I'm happy so far. YMMV.(your mileage may vary)
Are you based in Canada? [Your last name suggests that.]
If you are up here, there is a free education resource and book for patients starting in ADT (and their partners). It covers just about all the evidence-based strategies for managing the hot flashes. See: LIFEonADT.com
My husband is from Canada but doesn't live there now. That looks like a great resource though. I'll have my father-in-law get and send it. Thank you so much!
I was on ADT for 26 months. It caused both hot flashes and general insomnia. I had my oncologist prescribe a slow release version of ambien - basically a sleeping pill. It worked pretty well to keep me a sleep for the first 3/4s of the night. Other than helping me sleep it did not seem to have any other side effects.
I use a small table fan to create a little breeze across where I sleep all year long. When I get a hot flash or awake with a hot flash, I can quickly throw off a layer of bed covers, evaporate/cool down quickly, and cover back up again after it passes. I've been on Lupron a little over 5 years. After a year or two I became more accustomed to the hot flashes, regardless of when/where they happened.
They are also a good conversation starter and source of mirthful solidarity in social groups involving post-menopausal women.
I also used to moan and make pitiful noises around the house when I'd get hot flashes, and playfully see if I could get my wife to touch my forehead to confirm the sweaty evidence and maybe give me a little more sympathy. It's been long enough now that she doesn't fall for that trick anymore! Ha. Ha.
Not unlike menopause, it’s tougher for some than others, unfortunately. For my husband, whose been on intermittent hormone therapy (on and off since early 2006), some rounds are easier, winter easier than summer, etc. We mostly avoid spicy and “heavy” foods, alcohol, stress, and warm, crowded places. Cool water, iced foods and drinks, and ice help. His hair is shorter, and he wears mostly lightweight cotton, and very rarely a tie; he carries a small fan, and owns a fan that can run on batteries or plug into a wall socket— or his cell phone. For this current round of treatment he bought a small “personal air conditioner,” which is like a humidifier but blows cold. He uses relaxation exercises and calming breathing. It seems to help also to not get literally “hot under the collar” about things: staying relaxed seems to help. Best wishes.
Thanks so much, Wendy. You're right...we are all different. My husband has more hot flashes in a week than I did throughout my journey into menopause. And I feel for him.
Some good ideas here. I'll be shopping for one of those fans!
Ok, I know not very helpful, but you can get a hat with a solar fan built in for about $10 on Amazon. Gabapentin took out 90% of my hot flashes. 600 mg at bedtime. Know you tried that, I do remember being very foggy for the first couple of days. The fogginess went away, or I am still foggy and don't realize it. You have a tremendous amount of replies. Hope someone here has the answer.
Thank you, Monte! We're willing to try about anything. So glad the Gabapentin worked for you. Yes --- lots of super helpful replies from very kind people. If this group doesn't have the answer, there probably isn't one.
Before being diognoised (via a random physical exam) my line was “you got to live before you die” when answering my wife about doing something outragious (e.g. roller coasters, human slingshot, scuba night or deep diving, etc). When my mortality was flashed in front of me, my opinion stands!
Stop rolling your eyes!!! I started about the same time as you and have endured all that was put on my plate (ERT & ADT). My #’s are good so I am taking a QoL (quality of life) break. Sounds like that what your husband wants / needs! My SE’s go far far far beyond hotflashes and “must” stop for a while or my head will explode!!!! I have a plan with my Urologist (similar to intermediate ADT) and will act accrdinging to my PSA #’s going forward. Hopefully getting my physical, social, work, love lives back.
At 63yo, there is a lot to be said for quantity of life as well. Yes I want to go to my 10yo granddaughter’s wedding, want to watch my grandsons hit that walkoff dinger for the Sox’s (or my granddaughter!!!) and watch / help them to become adults!! Maybe meet a great grandkid or two.......etc.
I got to do a balancing act of good and bad!!!! If I have to go back on the ADT, Sucks.....but I’m alive!!!!
LASTLY, (this is my condition / opinion only). Avoid the estrogin!!!! As if ED wasen’t enough, whatever caused the need for penile rehabilitation isn’t enough, zero labidio isn’t enough, I get to have “man boobs”!!! Don’t get me wrong, I love boobs....just not on me!!! That being said, you’d think this would give me something to do while the wife is at work but, man oh man, DO THEY FREAKING HURT. Now (in addition to the above) I can’t even hug or cuddle with my wife or hug other family grandkids and close friends!!! Ths sucks out loud!!!
I'm so sorry about your boobs, Jim. Mine were sore on a monthly basis for 35 years, so I feel your pain. You're right. This whole thing does suck, but we forge ahead doing all we can to cope, right? All of you guys are my heroes for doing that day in and day out.
I used to suffer from wicked hot flashes, usually one every hour. Dr. Myers had me start using an estrogen (estradiol) patch and it works great. Been using for about 4 years now. I still get flashes now and then but nothing like it was before. There’s little to no risk for cardiovascular complications since it is absorbed through the skin and not processed through the liver like the pill form is. It also helps maintain bone density.
Unfortunately, my husband's doctor has informed us that he won't prescribe estrogen ---- says the side effects profile is worrisome. Glad you have something that works for you, though.
If I recall it worked rather quickly, within a week. BTW none of my current medical team including a couple really good medoncs and my cardiologist have a problem with me using them.
Unfortunately, my husband's doctor has informed us that he won't prescribe estrogen ---- says the side effects profile is worrisome. Glad you have something that works for you, though!
My wife and I both suffer from the hot flashes. Several years ago she got a fan that goes under the covers to help cool her, my daughter got me a hand held fan to carry, Battery operated can be found on EBay or Amazon. Doctor has me on two Effexor pills a day. Have found that high humidity makes them worse. I also carry a large kerchief to wipe down with. 😜😜😜. Good luck with the monster.
Glad you're getting pretty good results, Survivor! Megace hasn't been that effective for my husband, unfortunately.
You and others in this group won’t like my comments, however, I’ll make them in the spirit intended. Readjust thinking. Hot flashes means that the Lupron injections are working. Every time I had hot flashes day and night, and it seemed like every hour, I would tell myself how lucky I was that my hormone shot is still working. I never took any anti-hot flash medication.
All my female friends got a kick out of the point where I got red and and started sweating.... lol.
Fatigue? With or without hot flashes, there will be fatigue. Stop and rest. Kick back and rest. Power naps and falling asleep while reading or watching TV are common place. Until your body gets use to injections, rest.... again attitude is part of the fix.
Heck, I even wear my breasts as a sign of beating this bastard. Nice to shave only twice a week..... my point is instead of complaining, look toward positives in your life. You will overcome.
I am so glad that Lupron/Eligard suppressed my testosterone to the point that I only need injections from 2004 to 2010. Fact, without the suppression, the alternative was not a positive outcome. Rejoice that Lupron is working.
Well GD, you are correct. I don't like some of your comments. Not because I question your intentions, but because you presume to know my husband, and our particular situation.
I think we can all agree on gratitude for Lupron keeping the cancer at bay, hot flashes and all.
Then you say "stop and rest"...."kick back". Is my husband supposed to do that while in his office, or when he's out in the plant? He still works full time, hasn't missed a full day since diagnosis, even through chemo. So, not an option.
Until his body gets used to the injections? He's been getting Lupron injections since April 2017....so since that time he was just supposed to rest? Geez.
I don't think I have EVER heard my husband complain about anything that negatively impacted him. So no, that is not an issue. He's one of the most positive people I know, but having Stage IV metastatic disease at 57 can weigh on a guy, ya know?
I'm very happy that you had great results with Lupron and that you haven't had to take it in 8-9 years. You're extremely luck and I'm glad you realize that. We're lucky in many ways too --- access to excellent care, great insurance, supportive friends, etc. We rejoice and are grateful for every day. And we're all about positive thinking, but unfortunately my husband's body creates some very unpleasant circumstances for him. So pardon me while I seek out help that will make this journey as easy as possible for him.
You meet so many different people on this site!!! With the “life lemon” we’ve been served, you have those that are spitting mad, moderates / confused and those that make lemonaide!!! I am fortunate in the fact that with my mood swings, I can relate to them all!!
I’ll mention how I feel about this or that, and what I able to do or can’t do or what I use to do.....(because of my life saving treatment) and some respond with how they won a Triathlon while on the treatment and some respond that they are the same or worse than me. But nobody has put themselves in my place!! When you ultimately survive or mearly have little victories, you will brag!!!! I treat those as inspirational but I know my limits!! But please don’t take them as insulting!!! I get the job thing, I lost mine 9mo’s ago due to SE’s of Eligard. Once again, my SE’s were / are far far far more than hot flashes!!!!
We’re all in this big shitty club and all trying help each other find the easiest, most effective / safe way through!!
I hope that you know that this is a great place to vent too!!!!
healthplexus.net/files/cont.... I used Depo-Provera and it worked for me in 2001. I only used the 150mg syringe pre loaded. Please read the above site for more information. It usually took a few days to start working an would last from weeks to months.
Thanks very much for the link, JST. Unfortunately, my husband's doctor has informed us that he won't prescribe estrogen. But I'm really glad it worked for you.
Minutes like clockwork, 24 hrs a day, seven days a week, 52 weeks a year. Tried Ambian, soy, acupuncture, Chinese herbs etc, etc. Nothing worked. The finally took Venlafaxine 75mg daily and it seemed to help. Now on 37.5 mg daily. I was in a clinical trial for a year using estradoil cream. Worked great controlling psa and hot flashes diminished greatly. I have been off all medication for 14 months and hot flashes are coming back. I have yo start treatment in the next month and am going to try estradoil patches or gel instead of lupron. Good luck. I know.how terrible hot flashes can be and the docs cant seem to do anything about it.
Bless your heart. Every 45 minutes?! Yikes. The Effexor hasn't been much help to hubby, but glad it helped you.
Sorry you're having to resume treatment and wish you all the best in getting good results and keeping the flashes at bay! If we discover anything not mentioned here that's helpful, I'll be sure and let you know. Thanks.
One more thing. I got myself a few remote control fans. Kept one next to my bed so when i got a hot flash i could just start the fan from the bed. Worked great. Also had a fan by the recliner i used to watch TV. Same result.
Newest effort at our place is “evapolar,” a small plug in electric fan (about 1 foot cube), with a removable water tank — no idea how it works but it does cool and the flow direction is adjustable. Seems to be helping.
My hot flashes were extremely severe, every 20 minutes, completely unable to get to REM sleep. I'd be soaking wet halfway through the night. Just as bad in the daytime but that was more major annoyance than medical emergency.
A few months of chronic sleep deprivation and I was worse than worthless. I lost the ability to concentrate and critical thinking. Life was not worth living.
I won't bore you with all that I tried, but I did try every single thing mentioned on this thread and none of them worked. Gabapentin was the closest to success, but required steadily escalating doses, to the point where I started getting toxicity.
The Lupron wasn't working, it was killing me faster than untreated prostate cancer.
My oncologist noted my suffering, wrote in my record that I was exhibiting "Multiple Grade 3 toxicities." Grade 1 means you must be treated, Grade 5 means you are dead.
So we quit Lupron for a while. Other adventures, not relevant here. IF I go back on Lupron, we've agreed to try Depot Provera 400 mg injection for hot flash control. A single injection is required. Every patient that I talked to, and every doctor my oncologist talked to, reported 100% success. So I have hope, although I dread returning to the not-so-slow death of Lupron.
I do not wish to debate anyone here, but there are a variety of evidence-based strategies for managing ADT induced hotflashes covered in the ADT book. Furthermore our research (admittedly still unpublished) suggests that the information in the ADT book plus the ADT class can significantly raise patients self-efficacy in managing that particular side effects and reduce the bother from hot flashes. The "our" in "our research" are the ADT educational team, mostly made up of PhD clinical psychologists. See: LIFEonADT.com.
Other factoids...
There are now both preclinical and clinical published data showing the estradiol can elevate sexual interest significantly in men on ADT, although not necessarily unto the normal level for men who are not on androgen suppressing drugs.
Yes, gynecomastia is a side effect. But man vary greatly in how bothered they are by that. Also any PCa patient with estrogen sensitive disease (e.g, BRACA two mutations) should not go on estradiol.
I had Gynecomastia from casodex . What is the generic name of estradiol gel? Will Gynecomastia get worse from using it in lieu of Lupron and is there a med to mitigate Gynecomastia?
If you got gynecomastia from Casodex, you can expect it from estradiol. But if you already have it, it may not get any worse and it is likely to be less bothersome in the long run.
For a perspective on the psychological issues around gynecomastia, see:
The social context for psychological distress from iatrogenic gynecomastia with suggestions for its management.
Wassersug RJ, Oliffe JL.
J Sex Med. 2009 Apr;6(4):989-1000
Also for my own personal response to gynecomastia and estradiol:
See: Wassersug RJ 2014 Prostate cancer, gonadal hormones and my brain. J. Sex Marital Ther. 405:355-357.
Today, is an exception as I rarely read or post to HealthUnlocked...and can't send attachments. So if folks, are really interested in such topics, send me email to my personal email, I can send them copies of these papers. My email address is easy to find on the internet.
I’m sure I don’t know if you sleep together but while dealing with the hot flashes / night sweats in the past 18 months, my wife and I do not.
Living in southern New England (close to the shore) we have a wide span of temps through the year. Summer, we used to like sleeping with the doors and windows open and a ceiling fan on. She still enjoys that and I’m in the kids old room with an A/c on.
In the winter she’s all bundled up (we still turn the heat down to 60* at night) and I’ve got the window open.....in the kids room........!!!
Easier to warm up than it is to cool down!! For me anyway!!!
Seprate rooms you say? Waking to pee at night, blankets on and off. The alternitive was divorce!!! Can’t afford that!!!
Some good advice in the previous responses. I do not have anything new, but, when my dr first explained to me the side effects of hormone therapy, including hot flashes, I looked at my wife and told her I hope I was patient and understanding during her menopause. Well, turns out I was not. Best of luck.
The homeopathic remedy lachesis is thought to br helpful with hot flashes. You can probably get it at whole foods or amazon online inexpensive no side effects or interactions with chemo. If no help nothing reslly lost Best of luck
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PSA going up. Next on the agenda.
which med for high blood pressure?
Time for action?
They're BAAAACK - medicare election time for 2023 - so confusing
Crossroads - ADT or wait for psma pet/LU 177? Meeting with oncologist to discuss tomorrow 
