ADT Side Effects

Sorry if this outreach for information is redundant but, just couldn't find a specific response to my questions:

I am well into my 2nd monthly Lupron injection and am getting hammered with nightly leg cramps… I stay hydrated (maybe not enough) is there an off-setting supplement to recommend?

Also hot flashes are running wild …I hear estrogen patches mitigate.. any other suggestions?

33 Replies

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  • Tips for cramps: salt, mushrooms, bananas, cantaloupe. If still a problem, a magnesium supplement may help.

  • Have similar issues, on Lupron several years with good results except periodic night sweats. Shot of Depot Provera worked great for me for several years but recently no one wants to pay for it (VA or Medicare) since it is for women. Still fighting to get some w/o paying.

  • I also experience cramps, but only occasionally, and mild. I assumed it was postassium, but not sure if that was what helped. I did not connect it with Lupron. Curious what others say....

    Hot flashes. Have not found a fix. Bought a fan.

  • for leg cramps I am wondering if you are also on zometa, and what your calcium levels would be, I know when I worked offshore on boats and had no source for calcium we often got leg cramps, attributed to low calcium

  • Hey Dan,

    If you're on a boat (not a ship) for long periods of time, I can sea :) why you might have cramps, regardless of your calcium level. I spent a little more than a day off the Jersey coast, fishing. And, I'm here to tell you, my legs were like noodles when we docked. And, then we had to clean the boat. It's hard work, but I'll do it again anytime. Ah, who am I kidding? I'll be lucky to get in a row boat now.

    Joe

  • Joe, I recently retired from a 35 year career fishing in Alaska of the last 25 I was mostly alone in my small boat netting salmon in the Ocean, It was a great lifestyle and I had lots of friends in other boats we watched out for each other, kind of like here in this group. 2 years ago I had to watch my treatments closer and I was really to tired for the getting up at 5 am and fishing round the clock.

  • That sounds like the life. I love the outdoors, but too many trying to ruin it.

  • I found this on the livestrong site, but first what adt are you on, I know that zytiga can lower levels of potassium and zometa and other osteoporosis bisphosphonates can lower calcium , both of which can cause cramps, you should be able to see your latest potassium levels and calcium levels on your comprehensive metabolic panel (CMP) in recent labs, Do You get copies of all your labs, You should never leave the Dr without copies, they are yours and by law they have to give them to you, here is what livestrong says livestrong.com/article/4801...

  • Great advice. keep all labs and reports three hole bunch and bind in a folder, you could put inserts for the months as I do for my dad. this,way when getting other opinions you have all needed info in your hands. no running around later.

  • Leg cramps are not typically associated with ADT from LHRH drugs, like Lupron and Zoladex. That said, If one's calcium levels are beyond the normal range, that can be a factor.

    If one is bother by hot flashes, the most logical solution would be some transdermal estradiol. It could be delivered via patch or gel, but it is an off-label use. It is a far more logical solution though to the problem than any possible oral supplement because:

    1. High levels of oral estrogen increase one's risk of blood clots

    and

    2. It is precisely because of low estradiol while on ADT that one gets the photoflashes.

    Information on all that stuff can be accessed via:

    www:LIFEonADT.com

  • In my opinion, you should ask your physician to look into this with a full battery of blood tests. Off the top of my head, this sounds like it could be a problem with potassium or calcium or phosphorus; or, if you're taking another medication (such as a statin), it might be wise to diminish or increase the dosage; or it might be an issue with blood pressure; or, or, or ....

    And it might just be a matter of time and accommodation.

    As to the hot flashes: Some antidepressants / anxiolytics can bring relief, as can Megace and various agents that interfere with hormones. But it may also be a good idea to roll with it for a while, to help understand how your new body functions and your new emotions grip you. I found that simply getting acquainted with them was enough to bring them under control, like a need to sneeze or use the bathroom - one comes to read one's internal signals and make adjustments as needed, without feeling undue anxiety or embarrassment in the moment, or dwelling on it after the fact.

  • I had a whole battery of side effects with Lupton.

    The cramps, I took magnesium and a muscle relaxer prescription. Lupton can cause loss of muscle mass, so what muscle you have works harder to do the same work you used to do.

    I also took Black Cohash for hot flashes. My doctor also said Effexor works good. I was already on that for anxiety.

    A gel pillow helped at night but I heated that up within seconds of laying on it. I literally had the windows open at night in the winter! My wife had to sleep in another bedroom since I kept the doors closed and the temperature was around 40 in there.

    The sweats were horrible!

    I'm 2 years out from my last injection and still suffer from arthritis this stuff caused. But I will say, for the most part, the side effects have gone and 8 months ago my testosterone kicked back in.

    There is hope!

    Good luck and keep up the fight!

  • I was on lupron for female disease, unfortunately they did not give me add back estrogen. my bones hurt more than anything magnesium, black cohash, stretching very gently helped muscles. to each his own, but effexor is a very difficult drug to withdraw from as it is both an ssri and snri . hot flashes Will come when you choose to get off this drug so I don't advise it. until you get to the bottom of the cause , ask your doc if you can use an ems unit. I have a useful tiny really small rechargeable one by health mate from amazon and the tens 7000. keep muscles warm. carry thermal are bads or hand heaters in case you cramp up while out and need some relief. acupuncture depends on the type of acupuncture and the actual therapist , trigger point acu helps with acute spasms and anyone who knows trigger point will know regular acupuncture that is,also useful. talk to your doctor, and check blood chemistry with an outside lab. sometimes regular labs do not notice minute changes that the body finds very large bio health is a reliable company for that. I swear by magnesium and Epsom salt and everything I'm telling you us because I have a muscoskeletal diseaae and fight mule pain hourly. diet does matter . less sugar more veggies

  • I would say the best thing you can do is to get plenty of rest and exercise will help the side effects. This is the second time around for me being on the ADT. I was on it in 2005 for 3years Lupron Now I am on Eligard and I feel great! I have gone through a lot in the last 11 and half years but I am still strong and still here! Also keep positive no matter what happens! Good luck to you Dennis.

  • Woo hoo. I wouldn't want to get in the ring with you lol I see those boxing gloves have Ben working hard for 11 years. cheers to you xoxo

  • I was taking potassium, calcium, and magnesium supplements to help get rid of my cramps. The cramps were hitting me several times a day in the legs, arms, and back. I was also taking a multiple vitamin to get other minerals. All of these levels looked good in blood tests. On a whim I quit taking my diuretic and replaced my vitamin with a sustained release B-Complex. My cramps magically disappeared overnight. What a relief. As far as the hot flashes I've just gotten accustomed to them and actually they kind of feel good in the winter time. Lol

  • I have suffered from terrible leg, hand and foot cramps for years. The best thing I have found that seems to work reliably is Hylands Leg Cramps PM. Works like a charm. Available at Walgreens. You'll learn to live with the hot flashes.

  • Was on Zoladex as part of a trial 2003 to 2005, so your mileage may vary. Night [and day] sweats - night time I used a fan by my head so the wife wouldn't have to freeze. Never found a solution or treatment for the day sweats. Cramps - a dill pickle a day unless you have high blood pressure [check with doc]. I tried virtually every OTC, and a couple of prescriptions, to treat the side effects and never found any that worked for the sweats.

  • I started taking Magnesium because I read that women going through menopause took magnesium for hot flashes. Although they are not completely gone, I definitely notice a decrease in frequency and intensity. I only take 250mg nightly.

  • Hi

    I have been on this therapy for some 8 months...It hit me hard at the beginning...I found that on top of walking daily, avoiding alcohol, limiting carbs, the key was acupuncture. I went from 5- 10 hot flashes with knee pain to no knee pain and 1-2 hot flashes per week. The foods recommended worked for me as well. Best of luck but it will get better.

  • Sounds backward but I had horrible leg cramps and ended up reducing my calcium intake. The cramps went away but now have the issue with Osteopenia. I can only take about 600 to 800 maximum of calcium per day.

  • One thing not mentioned so far is the "pickle juice" remedy for leg cramps.

    This is a source of acetic acid which is needed to make acetylcholine. A shortage of acetylcholine will cause leg cramps.

    The old remedy of quinine is now frowned on. But I have an ancient neighbor who drinks a bottle of tonic water before bed.

    -Patrick

  • Suffered with hot clammy flashes for at least 2 years. Continued to take Medroxyprogesterone 10 mg twice a day. Don't know if this med is reason but they have stopped completely.

  • I take soy milk with my morning cereal and I don't seem to have much of a problem with hot flashes. I am on eligard. No problems with cramps. I continue on a fitness program I've been doing for 20 years. I also take magnesium, D3, B12, CoQ10, L-Arginine and multivitamins -- mostly for heart health (a-fib). I do seem to be finicky about temperature -- either too hot or too cold, but no dramatic hot flashes or sweats.

  • Ed above me here is quite lucky with hot flashes. I was hit hard with them about a year after starting ADT. Herbs did nothing, a shot of progesterone, the same, then Effexor came along. It was the worst six weeks of my life. When the side effects really started to kick in, it was too late. It took three weeks for them to go away. It felt like a was going to have a heart attack, or something like it, all the time. After that, I said screw it, and learned to deal with it.

    Joe

  • I very seldom get cramps. I get a fair number of hot flashes, despite taking Effexor (both for hot flashes and depression.) I take calcium, magnesium (500 mg), and vitamin D as well as a multivitamin. I don't like the hot flashes, they can be irritating / bothersome.

    When I mentioned a cramp that woke me up and kept me awake for awhile, my wife told me to take CoQ10 since "that is what is is for." I haven't had a cramp since that episode, so haven't had a chance to test out the CoQ10.

    On the osteopenia: My oncologist insisted I take Prolia (6 month injection, no side effects for me), and his nurse was very vehement about it, They did a baseline bone density scan as I was starting the Prolia. It showed osteopenia. 3 years later, I had another scan to see how things had progressed. In a major surprise to me and my urologist, the osteopenia was gone. Either the scans are messed up, or the Prolia has worked wonders.

    Marshall

  • ^ yrs on iadt. Some leg pain, but no cramps. Hot flashes every 45 minutes. Venlafaxine has heled reduce severity but does not eliminate. Estradoil patches to replace lupron apparently is easier on the body and may reduce hot flashes. I am entering a clinical trial which is going to use

    Estradoil cream applied to shoulders. Hopefully this will work.

  • Epsom salt baths , magnesium supplement but be careful of which MG to buy as magnesium citrate loosens stool and may cause dehydration and diarrhea. avoid dietetics like caffeine. Eat bananas , dribk even more water,and no I don't think estrodial as i thibk thetecate mixed views of its role in pca. carrying biofreeze and layering clothes helps with hot flashes. magnesium threonate I believe can be a good choice,and crosses the blood brain barrier, but please research. also juicing to restore as much balance as possible.bowl constipation can also cause cramps from toxins in the body so keep things running smoothly.

  • Hi, I had been having Lupron shots every 3 months for 18 months. Side effects are very personal to the patient. I have, like almost all patients, suffer from hot flushes. In my case, I also go through chills. In the winter, I notice the chills more. In the summer, hot flushes are harder to get through. Perhaps, the second worse aide effect I experience is loss of muscle mass. It's very noticeable to what you can lift around. And getting older makes it worse. I'm not sure if I can attribute to Lupron, loss of a bit of mental acuity. Likewise, I'm not sure if my cramps are due to adt. And to all of us, there is that emotional toll of having to go through cancer.

    Wearing the right clothing and changing your activities when you're going through hot flushes or chills can help mitigate the effects. I exercise regularly to regain some muscle mass loss. I play tile and card games with friends regularly to keep my mind sharp.

    Some patients are just fortunate to belong to the durable class that they're hardly affected by ADT. Nonetheless, we all can continue to live a quality of life (albeit to a lesser expectation) while we treat this as a chronic disease to control its progression. Promising and better treatments are coming on stream once our current tool kits are no longer effective. In the meantime, we're here to enjoy life like everyone else.

    So while you're at it, don't let these side effects deter you from enjoying your life with your love ones.

    I wish you the best and take care.

  • My leg cramps got really bad after starting Xtandi which included my whole body. Talked with my onc and my son suggested that I try flexeril to see if it helps. I have been sleeping so much batter with out the twitching and cramps. hope this helps. All my blood chemicals are in normal range.

  • What worked for me for stopping leg cramps (sometimes very bad) was drinking a 20 ounce bottle of gatorade every Mon, Wed, and Fri. I am on Lupron also but I should state that I had the leg cramp problem even before starting on Lupron.

  • I have long completed 10 cycles of chemo but still have regular neuropatic burning flushes and occasional cramps. Read a post on here re Alpha Lipoic Acid (University of Maryland have researched) that is prescribed in Germany for night sweats, diabetic neuropathy, etc. I have checked with my GP (specialist in diabetic problems) and my Clinical Oncologist - treating my PCa). and neither was aware of A-L Acid but have told me to go for it. Anyone els with any info?

  • I'm on Firmagon monthly (28 days) and have less side effects with this than I did with Eligard. I have night sweats, controling my weight is a bit tougher on Firmagon than Eligard, but I able to do it. I have slight fatigue some afternoons about 2 pm and take a 30 minute or so nap. I just started the first round of Provenge and find that that is making me tire easier than before. But again, I'm able to cope with it. The ADT worst side effects for me are the lack of libido, shrinkage of genitles, and breast enlargement. No desire or ablity for sex really SUCKS!!!

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