Dean, 37.5 mg capsule once a day of EFFEXOR ( Venlafaxine ) for 9 days knocked the sweats right out . Was recommended by my oncologist. .I started with 75 mg capsule but that dosage sapped my stamina, so the 37.5 capsule did the trick.
Carbide, on my 9th night of taking Effexor, ( 37.5 mgs ) the sweats stopped. THAT felt GREAT ! So the next few nights I did not use Effexor. On about the 4th night the sweats started returning so I immediately took 37.5. Continued a dose once a day for 3 days and the sweats left me..Went for about a week , sweat free. They then returned mildly for 1 night, so I did a doze of Effexor, and that was the last of the hot sweats. .Then I started getting decent sleep thru the night. .
Estrogen patches. 50mcg/day, changed twice weekly. Helps greatly with both hot flashes and fatigue, also helps protect bones. Dr. Snuffy Myers recommended the approach.
This is against hot flashes and bone loss as side effects. Higher doses are used in clinical trials: stampedetrial.org/media/187...
Hi Dean, I get really nasty hot flashes and my doc prescribed 20mg Paxil. It completely wiped out the hot flashes...they’re so rare that I don’t even think about them anymore.
Some days I hurt everywhere ( mets spread all over ) and because of adt I’m sweating like a pig, extreme exhaustion, red faced out of breath, etc. I’m extremely uncomfortable all over , those lumps in my abdomen, skeletal met discomfort, nauseous... more. When it’s really bad, my everyday opiate pain management makes me feel tons better all over / generalized. For the out of breath periods I find those cans of sports oxygen to be very helpful and there is poppy seed tea which , if used sparingly, makes things better for a while. You can look up poppy seed tea on Google and research the right seeds thru Amazon. As always , discuss anything like PST ( poppy seed tea ) with your medical team / GP before use. Some PST is very powerful and should be used sparingly and carefully. Plenty of good info on the web , but even more misinformation to sort through. Every little bit helps sometimes, maybe a bit of help in some of this. Good luck brother.
You must talk with your doctor about venlafaxine (I take 75-mg each night at bedtime). Or one of the other solutions mentioned by the men here. There is NO need to suffer from those hot flashes and sweats!
Many people get significant relief from hot flashes by using medicines like Venlafaxine, Trazodone, prozac ,gabapentin etc. Discuss with your doctor about these.
Physical activity reduces hot flashes and tiredness. I suggest if you can not get out of bed then, keep moving your limbs while in bed and do stretching... You may be pleasantly surprised if you implement the above two ways..i.e..medication + physical activity.
I use Lambs breath(100% sativa for day) makes me want to get out and do something..And Train Wreck for night went I want to go to sleep Hybrid 60% Indica an 40 % savita
At the risk of understatement, that's no way to live a life. I encourage you to follow up on the recommendations others have made in this thread. If that doesn't work, maybe try switching from Lupron to something that achieves the same T lowering result by a different mechanism such as Firmagon. There's really no great basis for that recommendation, other than the standard definition of insanity, "doing the same thing and expecting a different result".
ADT hot flashes are weird. They're extremely uncomfortable and a bit like having several panic attacks throughout the day. I've been having mild fevers recently that break and leave me covered in sweat but with a great sense of relief. To me at least, a hot flash feels completely different than being genuinely hot.
Dean I understand your situation, I have been there but not to the degree you describe. If you are on any other medications be sure and check for adverse interactions. There are 254 drugs that can cause serious side effects from Lupron. The effects can come from NSAIDs, aspirin, diabetes meds, heart meds ect.
It maybe none of the above but don't count on the doctor to check all of the 254. He may miss one.
Hang in there you will get some relief eventually. I hope you are seeing a good MO.🍸🍸🤠
Wow. Pca warriors and their weapons against the disease are different for everyone.
I take Firmagon shots every month since May 8, 2019. The doctor wanted to switch me to Lupron. I asked what the difference was and he said nothing, but it will be easier to do it every 3 mmonths instead of every month. I figured the devil I know, and said no thanks. I was tolerating Firmagon well other than being pretty sore for a couple of days, and more fatigued for about a week. Some months better than others.
I read a couple of months ago that fasting before Chemo helps reduce the side effects. I decided to fast before the shot. last 2 months, I have tried 16 hours and 20 hours. I also took celebrex before the injection. I had 0 reaction in November and December.
Could you be allergic to Lupron? Why not try other agents that produce similar results like Firmagon? Maybe you will find something that works.
I am no expert, but with the terrible side effects you are describing, maybe an orchiectomy could accomplish the same thing. It is difficult to contemplate, but it is one and done. My Dad had one in 1978. At the time it provided nearly instant relief of severe metastatic symptoms. He had a long spell without symptoms. He had a pretty good attitude about it. he told people it was time to stop referring to him as "iron balls." "Plastic balls" was now appropriate.
I believe you have otions. I hope your team helps to explore some.
I am confident I speak for everyone on the board as I wish for you to find a way to improve your quality of life.
Orchiectomy will cause hot flashes just as Lupron does. They are caused by the low testosterone and even more by the low estradiol which is again caused by the low testosterone. It does not matter how you lower the testosterone.
I’m one of the guys , like you, that Lupron Xtandi makes my life barely tolerable, if that. Seems like it would be impossible for things to be worse most of the time. Been on it nearly 15 months now and things haven’t changed much ... this life really wears me down too. Even worse , the first of every month I get a Zometa treatment which , for 5 - 8 days makes everything get 100X ( literally) worse.
I find some small solace in the fact that I’m still here despite everything ... I’m briefly beating this nasty B.S. ( expected to expire before Thanksgiving 13 months ago ) and no matter the a$$ whipping , I’m tougher than it is. The best part , of course, I’m STILL enjoying time with my wife and loved ones. ... I get a little more time to have a hug and to find ways to enjoy bits of life ( food, coastal visits , playing with a couple toys ) and tho I might wake up bent , folded , spindled and mutilated .... I am waking up and today I was still able to get up and make coffee , sit in the jacuzzi, watch part of a movie ..... enjoy some more time with the wife. Things could “ still “ be heck of a lot worse brother.
Hang in there brother. , you got this , we got your back 💪💪💪💪✌️✌️✌️✌️😁
Hey Guy! “Waking bent ,folded,spindled and mutilated “. Thought it was just me.? Mornings are difficult .This one was particularly difficult. I wake up nauseous ,dizzy and disoriented most of my days ..I’m ravaged by adt and no T... for me , almost five years castrated ... we need strong reasons to live in order to endure this whacked out scenario in which we exist . Luckily you and I have love and a reason to go one. I wouldn’t have made it through the first round without her .. Enjoy what we can while we can ...That’s all I’ve got . Take care Sir... peace
I think we all sometimes start to take things in our lives for granted and shine on much of what we have around us. Us PCa brothers get to experience looking at life from a whole new angle , and most of us start to appreciate and value things differently. I know I do. Our wives are right there in the trenches with us and have to experience everything side by side with us. They are the unsung hero’s that probably never get the credit they deserve , and like you said , we wouldn’t make it without them. They have to stay behind and grieve while we are cut loose. It continues on for them for a while. All of us guys need to make our hugs and kisses count while we still can. Tell them how much we love and appreciate them. Thank them for sticking with us.
Amen brother. Guys! Appreciate the one by your side. Without her there would be no me. She’s my great reason to love life .. but you’re right . It’s hell for the ones that love us . In this we are all the same . Be well . Thanks for replying !🌵
Speaking of waking bent, folded, spindled and mutilated .... my monthly trip to the Zometa Land amusement park - fun zone peaked sometime yesterday morning before I got up. This one was extra special , probably because I’d been off it for 6 weeks. I like it better if it builds slowly during the day rather than waking with the full bore awesomeness. Remember that old joke about hitting yourself with a hammer ... because it feels so much better when you stop yayahahahaya. That thrill ride makes the regular daily adt mess seem like a vacation when that thrill is gone . 😂😂😂😂. It’s funnie how everything is a matter of perspective sometimes .. ouch.
Anyway it’s letting off, feels like just a day or two and things will be back to good ole regular adt mess yayahahahaya yayahahaha ( wtf ) ... hey !! .... maybe that’s another benefit of a Zometa treatment, helps you appreciate things from a different angle once again ..... hummmmmm, .... what’s it say , tho , when you are anxious to get back to the regular ole adt SEs ?? Yayahahahaya ya ( omg ). Things r look’in up. 😁😁😁
I’m going Feb. 6th for my second prolia shot. After the first one I felt dizzy for a week. So we shall see.. It’s amazing what we can endure to enable us to smell the flowers another day .😂😂✌️
Hi Dean, I’ve read that acupuncture can be helpful in reducing hot flashes. And there’s no side effects with it. I don’t have nearly the degree of hot flashes you are experiencing, but I’m thinking about trying it. Also, exercise could be helpful, but sounds like you are not able to do it? I hope you find a way to manage the flashes.
I also recommend vivelle estrogen patches. I used them in the past with good results. I cut them in half and used twice weekly. Since it’s transdermal, thrombosis should not be an issue.
I hated Lupron. Had all kinds of side effects in addition to hot flashes. The joint pain was awful. It hurt to put my feet on the floor when I got up. Firmagon and Eligard have been much better.
MCRPC sucks. I know. But there are a lot of options. I’ve blown through xtandi, zytiga, and chemo. Now headed to Heidelberg for Lu177/Ac225 combination therapy. Also available is Xofigo, Provenge, and a multitude of immunotherapy clinical trials.
Have you discussed your symptoms with your MO? If not please do, he should be aware and able to suggest one of the options our brothers have mentioned here. I’ve been on 300 mg of gabapentin at night. Still have episodes but much less severe.
Lupron was hell for me too...but it’s really being castrated chemically that’s the culprit .I stopped the lupron shots ( I disliked them ) 9-17 with surgery . Unfortunately I’m still on a pill adt until failure. I too have nausea and dizziness . This is five years of adt ... Most men do not function without t.. you ain’t alone in this . You have love by your side . This is brutal for our loved ones too. Please don’t give up Dean .. Ive gone through emotional hell anguish and turmoil over and over . I hope that you can find some peace of mind very soon . This is a Grinder of a disease . It chews us us and spits us out . Hang in there ...I’m sorry for the cr news. That sucks brother. You have your reason right next to you . Hang in there Sir.. 🙏🏼
Hi Dean. Sorry you are feeling this way. I was on Estradiol patches and never had a hot flash after that. RE: the fatigue, if it's caused by Lupron, and perhaps not by cannabis, you should be exercising regularly; aerobic and resistance training.
I was having 40+ hot flashes per day when I started ADT. Stiff, achy...basically felt awful.
My MO prescribed Gabapentin for the hot flashes. And I walked. And walked. And walked. The Gabapentin did the trick for the hot flashes. And walking, riding my Peloton, and light weights helped immeasurably with the fatigue.
I am so sorry for your plight. Having had very negative response to Lupron, I think I have some idea of what you're experiencing. It's awful. It sucks.
Hot flashes? check. Emotional roller coaster? Check. Shrunken genitals? Check. Higher BP? Check. Wt gain? Check. Depression, despair, suicidal thoughts? Check. Join pain? Check. And so on. Frankly, I found little that helped me with any of these side effects which, btw, seemed to appear and disappear for no apparent reason. For example, severe joint pain for about a month and then, poof, gone.
Anyhoo, the ONLY thing that seemed to help me at all was exercise. And, I'm no gym enthusiast (more like a gym slug). I forced myself - despite the aches and pains and fatigue - and it seemed to help (of course, I'd take an hr nap afterwards).
So, I hope you weather this crappy storm. Good luck to you.
Get rid of the Lipton. Go on xtandi alone. I dumped Lupron after 21 months due to feeling horrible. Never again. Went on high dose cassodex (150 mg day) alone for 6 months until I was able to get xtandi approved. Psa went from 72 to 1.7 on cassodex. Then started xtandi 3 years ago. Last psa is 1.1. no clinical progression yet just what I had. Feel WAY better on xtandi alone. Even got an erection back. You might have to change doctors to do this. Xtandi is approved for stand alone therapy. Live or die I won't use Lupron type drugs again. All the best. Ken
I’m really sorry to hear about your bad Lupron experience, and even more sorry to hear you have moved into mCRPC status...welcome to my world. 6 new bone tumors as of 12/26 (a belated Christmas lump of coal), and I just started on Xtandi last week, while continuing on Lupron.
Can you switch from Lupron to Eligard or Firmagon? They can have the same nasty side effects as a Lupron, but every individual may have different side effects. What has your m.o. said about your nausea? My wife (a tongue cancer survivor) and I were both prescribed Ondansetron (Zofran) for nausea and it is a minor miracle worker. Still use it whenever I feel like upchucking. 🤢🤮
Like you, I still have night sweats and hot flashes, but mine are not as intense or frequent as before. Paxil, Effexor, or Gabapentin might help. Keeping the room a few degrees cooler, even moisture wicking sheets and mattresses may help. We recently bought a new set of sheets with bamboo fabric and it does help. There are other that help make the night sweats more tolerable.
I hope you find some relief for the sweats! Wish I had more to offer you. Keep the faith, brother!
Look at my profile. Did you have the scan while still on Lupron? Presumably so if you’re castrate resistant. Try estradiol patches and dump the Lupron. Start with four .1 mg/ day patches changed weekly and see if your psa declines.
Estradiol patches did the trick for me, I was having severe hot flashes along with a weird sickly feeling on an hourly basis. I counted fifteen one day. Dr. Myers prescribed the patches and they work well. I rarely get flashes now, I’ve been on Lupron for almost six years now.
Dean. Take your doctor by the throat, there is no reason for you to have these symptoms. When I got sick that was the first thing my doctor Said, there was no reason to be hurting , get on some good anti nausea drugs, I was on two different ones. 3 hours apart. This monster is hard enough without the use of good drugs 🙏🙏🙏🙏
I found that in the first few months after adding Xtandi to my Lupron....I felt ready to "pull my plug"...and when I did BIRM....I was amazed at the turnaround in side affects and energy and joy! I used it for about 6 months....after I stopped using it...I seemed to tolerate everything much easier.
Hang in there. You will feel better as time goes on. It’s one day at a time. I feel for you. I have been on Lupron for 9 years. Sucks. I will pray you u friend
That sucks to say the least, talk to the Dr about nausea meds and patches to offset the hot flashes. I was extremely lucky as they are not that bad and I had nausea meds from chemo that I never had to use so I have kept them. They take away the nausea within 5 minutes for 6 to 8 hours.
The 7.5 mg (monthly) Lupron injections stopped the side effects I suffered from the 30 mg injections.
You may want to read my transdermal estradiol (tE2) posts. The gel has been a 'WONDER' hormone regimen for me! No side effects other than little boobies. I am absolutely thrilled with the results. I am 76 and work almost every day (sometimes 10 to 12 hours/day) finishing out new condos...building cabinets, tiling, plumbing, electrical work, etc.
I used effexor to combat the flashes, but it didn't work all that well 4 me.
The NEXT time I do ADT (if I have to) I'll try the patches.
I've read about many men who claimed it made a big difference.
About the cannabis - not sure if this applies to you, but I find that my body temperature (maybe a glandular reaction) seems to get a little wacky (just a bit on occassion) AFTER I consume my medical dose. That means (to me) that the receptors respond in a bit if a negative way to cannabis.Just mentioned it because it strikes me as being a bit strange to react that way.
Note that I do not flash or soak the bed anymore - I just get the odd feeling after consumption, but it doesn't last long enough to make it bad.
I stopped ADT about 16 months ago - my withdrawal symptoms have slowly diminished, so I wonder if the cannabis triggered a bit of a past, lingering ADT reaction.
The predicted time for my SEs to be fully gone are supposed to be a few months away - spring 2020 - I can't wait, but I have been feeling better as time progresses, so we're hoping.
I asked my uro about etrogen patches he said whats that ...hes also the one that wanted to rip my prost. Out the day pathology came back....started me on casodex in the office that day....lucky i got another op from onc. But i still see the uro cuz i went to school with him and he gives me 3mos lupron for 500 .00 since im a deplorable uninsured for 4 more mos....but 3yrs of this has about taken all the life out of me also...psa is now at 5mos doubling time .. ...ive also been on earleada so my nxt choices are even mor qol dispariging...thank god for mary jane and a loving wife..otherwise i'd choose a bullet ...just me saying...it may be easy on some but for us with aggresive forms and blue collar wore out bones it aint no picnic...peace and love to all in this group the venting is the best medicine....b.w
Hey, this is my first post. I had RP in Oct 15, casodex and radiation in 19. On my 2nd lupron shot. I went through the first shot pretty well, but did have hot flashes and some weight gain. But, after the 2nd injection I have had terrible SEs. Extreme hot flashes, extreme fatigue, big weight gain, joint pain, mood, terrible sleep, always have to pee and leaking, etc. Doc prescribed effexor 37.5 and its really done the trick especially with hot flushes and mood, but struggling with exercise due to fatigue and weight gain. Started taking CBD which I think is helping with sleep. Prior to PC I was 5'8" 175 now 230. Did yoga every day, lifted, recumbent biked, and walked 4 miles. Now, struggling to get to gym, but I feel like I'm ready mentally (probably the effexor and CBD kicking in). Any advice?
My husband is stage 4 , gleason 10 and his cancer is also ductal . The estradiol patch has eliminated his hot flashes. He is also on zytiga , loupron, and prednisone. Good luck
OK so I had a very interesting meeting with my medical oncologist. 2 days ago.
We actually got into an argument about why I did not bring out my printed out medical records...... WTF???....🙄😳
Anyways at the end of the Office visit. I was walking out of the door, and my doctor told me to stop at CVS and pick up a supplement called Estroven. His last name is Cheong. And told me before he believes in yoga and trying more natural remedies at this point(but staying on my current meds).
I cannot tell you the difference, I haven’t felt this good since before my cancer. Night sweats gone in 2 days.. and my fatigue has lessen by about 50%.
Why haven’t I heard of this before?
I swear I feel like I’m getting out of the deep depression and wanting move.
ESTROVEN !
There has to be a trade off for feeling this good..!?!?!?
I am 4 years into the bone MEts after radical prostectomy, but still naive. I don’t know what to say except that I am pulling for you and wish you the best in your fight.
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