Painful Hot Flashes!! ??

Crazy question, Has anyone on ADT ever experienced an excruciating , odd Pain / Sensation primarily in their legs, but sometimes back, shoulders, and ribs as well, with the onset of Hot Flashes?

[Muffin2019]

just the hot flashes that are worse in the summer, cold drinks and actually sticking my head in the freezer for a minute or so helps.

[RonnyBaby]

I'm not aware of the co-relation between the two events - but I'm no doctor.

When I was on ADT and experiencing the 'flashes' (and they were severe and numerous) I had no other 'symptoms' - just the oncoming rush and the early warning a few seconds before the event ....

[CSHobie]

Tommy, do you have Mets in those areas where you are experiencing the pain ?

[Hidden in reply to CSHobie]

Reports were nonspecific stated "widespread bony metastases" but I did see a spot on both legs, just below the knee , in my original bone scan. The other oddity is that I usually have a sudden urge to use the bathroom (both) when these are intense. Therefore, perhaps it's neurological, as I suffer from fibromyalgia numb feet and legs as well as painful sciatica.

[Jackpine]

I do have episodes of pain primarily in my legs, but I don’t notice any hot flashes associated with the pain.

[Wdoug]

Yes, but my pain was in the penis and then radiating to my wrists and ankles. But I survived and now 5 years later and back to almost as good as before but with somewhat limited lung function. 3 1/2 years on Lupron with testosterone at 8 probably caused some of this. I did go to LA Fitness daily throughout -- looking back, but I don't know how -- but now T is back at 300+ and doing 2 to 3 miles on treadmill and 12 various weight machines and enjoying it.

At 3 and 4 year mark I had redefined "my normal," thinking I was just happy to be alive. But Blessed am I that at 77, I am back where I was at 72. All I can say is, the treatment must've worked, and I need to make Good Use of my Bonus Healthy Time I've been given.

[Hidden in reply to Wdoug]

How can you have "Manly" levels of Testosterone while on ADT?

[Joeym1040]

I have had hot flashes since 2011 when i started on Lupron. Every 45 minutes and very sever in the beginning. Still get them now every 45 mins but not as server. I take Venlafaxine that seems to help. Also had 1 year clinical trial for Estrodil and had NO hot flashes. Soon as i went back on Lupron they came back. I can tell about 1 minute before the hot flash. Strange sensation almost like nausea, then pain in my calf's that slowly moves up my body. When it get to my chest the hot flash explodes. Worse at night when in bed, less server during the day. Every time i mentioned it to ad Doctor they just said they never heard of anything like that.Aside from losing sexual function, which surprisingly you get used to, the hot flashes by far are the worst side effect by far, and there seems to be nothing then can do. The estrodoil patches supposedly help, and i am going to try again to get them.

Good Luck

[Hidden in reply to Joeym1040]

Yes, two of my doctors have no idea when I explain the odd sensations

[Joeym1040 in reply to Hidden]

The doctors talk about all the other side effects but no hot flashes. I think because they have no idea how to stop them or help them. I tried acupuncture, Chinese Herbs, soy etc, etc. My Dr in Dana Farber (top guy) once just said Joe, i know what you are saying, there is nothing i can co. So we must bear it or try estrodoil patches.

[LifeQuality]

I've been on Lupron for 2 1/2 yrs and when I have my hot flashes every couple of hours, they are NEVER without leg sensations! I wouldn't call them "excruciating" -- more like a tingle. But strong enough that I need to stand up and "walk it off". Sometimes it's limited to below the knees, but other times it's all the way up to and including my crotch. (Side note: at my last MO visit, she offered me a shot of Depoprovera to alleviate this. I think I might give it a try.)

[Masirah]

I was prescribed ADT last December. Due to the side effects I took myself off this medication and did a lot of research into the subject. Alarmingly I came across and Israeli professor of urology or oncology, who suggested that this type of treatment was unnecessary and probably dangerous. He suggested it could cause heart problems or a stroke. My understanding is it's to reduce testosterone. Well I have just turned 70 and I figure my testosterone is a lot lower than it was than when I was in my 30s. Surely if testosterone was the problem, why didn't it give me problems 30+ years ago? I have been reading a book by a biochemist, who says the problem is oestrogen. (estrogen). The author, Chris Woollams runs a charity called CancerActive and his book has been endorsed by numerous medical professionals.