HealingWell
Search Close Search
☰

ADT and SRT Journey Part 6

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2 34 5 6 7 8 9
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/27/2019 9:52 PM (GMT 0)
SP, I came off ADT Feb 22nd. So I’m just a few weeks ahead of you. I think, now that you mention it, I think I recall That the first half of March, I had serious sweats along with my hot flashes, more so than the period of treatment. As I mentioned in another thread, I think the flashes have lessened in frequency as well as intensity of the last week or two. I hope I’m right and I hope that’s the case for you as well g as I mentioned in another thread, I think the flashes have lessened in frequency as well as intensity over the last week or two. I hope I’m right and I hope that’s the case for you as well king forward.

Keep in mind that unlike you, I only had 6 months of ADT.
Posted 3/28/2019 11:28 AM (GMT 0)
Rich, as we have read through out this forum so many times the different SE's that us guys experience from ADT, it will be interesting to see how quick you recover from these I'll be watching as hopefully my last one is in May. I will have to say maybe like Todd says you just get use to a new normal but it seems like hot flashes have not been as bad just the joint pain in my hands and I haven't been quite as tired in fact have been having a terrible time sleeping will sleep a couple of hrs max then I'm awake so start pacing around the house as they want me to walk as much as possible after surgery. Yesterday walked 45 minutes without any pain in my right leg first time since last August then I could feel the back starting to let me know that it was time to guit. Then I get home and find out they have added another appt. when I go for my PCA checkup in May. I have to have a electrocardiogram as my murmur has gotten worse and they say I have developed Aorta Stenosis. I started getting a murmur back in around 2010 and after several tests was told that it was exercised induced. Now I guess on the scale of 1 to 6 mine is now 3+ with lots of turbulence. I just personally wonder how much Lupron is involved if at all? Maybe some of the guys that have had some heart issues might have some ideas on this? Let's hope Rich the psa's stay undetectable and the SE's disappear quickly!
Posted 4/5/2019 1:00 PM (GMT 0)
My Lupron sentence is ending - last 3 month shot was yesterday!
Now we wait, and wait and wait some more. Maybe some relief in 6 months, maybe a year - nobody knows.
It still feels good to get to the end of the sentence.
Posted 4/5/2019 1:56 PM (GMT 0)
Rob good to hear from you congrats on your last lupron shot. Hopefully in a month I will be following in your footsteps with my last 6 month shot, and then like you say wait for a year to see what's happening. Really trying to work on the Lupron belly now that I can walk without the crippling leg pain. Waiting for the snow to melt off the bike trail so I can walk on that, The surgeon said I should be able to start riding my fat tire bike in 4 wks on smooth pavement and he emphasized smooth so looking forward to that!

Larry
Posted 4/16/2019 3:09 PM (GMT 0)
Just updating
Posted 4/16/2019 11:15 PM (GMT 0)
For a while I felt like the hot flashes were becoming less frequent and less intense. Now, 2 months after the end of the course of Lupron, they are suddenly becoming MORE frequent and somewhat more intense.
I’m also feeling more tired, and up until now I’ve not had any fatigue.
How ironic. Last 3 month shot in November, and NOW I’m feeling it more than previously. I guess the longer T stays down, the worse it gets.

A little embarrassing when I’m in a meeting with a client and I just start dripping sweat out of nowhere, and need to take off my glasses and wi-e my face. I tell most of them that it’s a side effect of prescription strength Niacin that I take for lipids.🥺
Posted 4/17/2019 12:28 AM (GMT 0)
Oh Pratoman, what a bummer!

We can only hope this is a small "bump in the road" and all of this will soon be behind you. I am slightly ahead of you and have not seen any of what you describe yet.
Posted 4/17/2019 2:32 AM (GMT 0)
Captain, I’m assuming just that, a bump in the road. That goes for this whole early experience.
All manageable stuff, just extremely annoying at times.
Posted 4/17/2019 10:11 AM (GMT 0)
Ken I have read where it takes sometimes 18 months to get over the effects of Lupron hopefully since you were not on it to long it truly was just a bump. What do they say it keeps on giving?

Larry
Posted 4/17/2019 1:09 PM (GMT 0)
Yes I’ve heard that too Larry. My RO told me last week that it generally takes 6 months to a year but that “in my case he thinks it might take less time” don’t know why, maybe because I was only in it for 6 months.
I guess time will tell
Posted 4/18/2019 12:33 AM (GMT 0)
Ken, Larry--

I've been plagued by hot flashes since going off Eligard in early March. I hope it means my T is starting to rise and my body is working to adjust. But I have no scientific/medical basis for my theory. Next blood work in six weeks.

BTW, started on mirtazapine (Remeron) for insomnia and depression a few days ago. Sleeping much better already, let's hope that's a sign it'll push me out of the doldrums.
Posted 4/18/2019 2:30 PM (GMT 0)
SP, from the wording of your post, it sounds like the hot flashes only started AFTER you went off Eligard? I am probably misinterpreting.

Regarding hot flashes, they are so odd.
It starts with a feeling that’s difficult to describe, maybe tension, or heightened anxiety, I don’t know how else to describe it. But once that starts, and it only lasts 15 seconds or so, I get very warm, then start to sweat, then cold and clammy. The whole “experience” lasts maybe 1 minute. Also, I get them now mostly during the day, and evening. Very seldom if ever do they come at night and wake me up.

I’ve always been curious if this is how others experience hot flashes, especially the “pre flash anxiety” or whatever the hell thats called.?
Posted 4/18/2019 2:53 PM (GMT 0)
I haven't read every post in this multi-thread topic, but I still find it odd that I seem to be about the only one who hasn't had the expected hot flashes or fatigue. I've now just finished a year of monthly Degarelix (Firmagon) shots and my only side effect has been increased joint and muscle aches in legs, knees, hips. Though maybe that's just come on anyway as a side effect of being 73. Now that I'm starting my first vacation from ADT I'm hoping the joints and muscles improve. But compared to effects most others report from ADT, I have no right to complain.

My oncologist said because PSA dropped so quickly to undetectable and stayed there he's inclined to let me stay off of ADT longer than he might otherwise. I've had virtually no blood test anxiety while on ADT (my wife has enough for both of us). But now that I'm off I'll start worrying as each test approaches. Because I'm in the control group of a trial I'll be having PSA tests every 4 weeks instead of quarterly, which means having to arrange tests somewhere while away on a couple of vacation trips over the summer.
Jim.
Posted 4/18/2019 3:47 PM (GMT 0)
Bohemond... lets hope you can take a long vacation and stay undetectable and hopefully joint pain disappears

Ken... I have the same exact feelings just about when I get ready to fall asleep I get that weird feeling your talking about then get the hot flash then I have to get up and then after a while try to go back to sleep.

Rich... I got 2 hrs of sleep last nite the insomnia has really been bad have tried some over the counter products but didn't help. Let me know how they are working in a couple of weeks maybe I'll have to try some. Are they addicting?

Larry
Posted 4/18/2019 3:52 PM (GMT 0)
Thanks Larry.

Larry, Rich, I found that Ativan or Xanax help me get a good nights sleep. I take it sparingly though
Posted 4/18/2019 10:54 PM (GMT 0)
SkyPilot,
I take 1 Doxylamine Succinate (over the counter sleep aid) and 1 Acetaminophen each night and it has worked good for me. Like you I tried many other until I found this.
Posted 4/18/2019 11:23 PM (GMT 0)
Ken, Larry--
Hot flashes were the main side effect of ADT for me. I took venlafaxine (Effexor) for the first couple of months, but it didn't help much so I stopped. Over time, the hot flashes abated on their own. Then right around when the last Eligard dose should have been wearing off, they came back with a vengeance. Weird. ... Yes, the benzodiazepines like Ativan and Xanax are good for insomnia and anxiety -- I've used Klonopin (clonazepam) from time to time -- but they aren't antidepressants and they can be habit forming, so they shouldn't be taken daily over an extended period. I'll report back in a couple of weeks on whether the Remeron is continuing to help.
Posted 4/19/2019 12:07 AM (GMT 0)
Captain I'll have to try them thnx!

Larry
Posted 4/19/2019 1:57 AM (GMT 0)
SP, sounds like a very familiar pattern, thanks
Posted 4/19/2019 11:29 AM (GMT 0)
Reminder: it takes as long to recover from leuprolide chemo as the injection is rated for. Like it takes 6 months to recover (as much as you are going to) from a 6 month injection. (even longer sometimes) It took me a solid 2 & 1/2 years to 'recover' from 2 & 1/2 years of leuprolide chemo. (This noted by continuous monitoring of my hypothalamus and pituitary hormonal outputs.) Some of the 'side effects' are permanent.

Hot flashes are due to your hypothalamus being 'locked down' by the chemo and thus unable to properly regulate your body temperature.

Heh - my body aches all over every evening due to serious daily exercise. I couldn't tell if the chemo made any difference in that at all.
Posted 4/19/2019 12:33 PM (GMT 0)

Saipan Paradise said...
BTW, started on mirtazapine (Remeron) for insomnia and depression a few days ago. Sleeping much better already, let's hope that's a sign it'll push me out of the doldrums.


Rich, I took Remeron for about ten days while trying to taper off Effexor before that big surgery last October. Yes, it did put me to sleep, but also brought about very weird dreams, which eventually became nightmares. Also I put on a pound a day even though my eating pattern did not change. The final two days I woke up with tremendous body aches... legs, back... everything that normally aches at the end of the day, as though I had already been thru a rough day. And this was upon rising in the morning. At that point I stopped. Just so you know. It is not a benign drug.

Regarding the residual effects of HT, I still have drenching hot flashes, brain fog, body aches, zero interest in anything sexual and have no body hair. My final Lupron injection was sixteen months ago, and my Uro says it can take 12-18 months for testosterone to resume production. My next PSA&T is in July. So it appears that as I've said previously, it will likely be 2020 before I know whether or not my PSA will remain undetectable once my T begins to recover... if in fact it ever does.
Posted 4/19/2019 4:47 PM (GMT 0)
My smart watch said I got 0 deep sleep last nite regular sleep 4hrs 56 minutes awake 3hrs 12 minutes. That was after taking 2 alleve pm's. I was desperate for sleep ok? Said to hell with it all this morning had cup of strong coffee and took the dog and went for a 8 mile walk at 17 minute miles. Sun was out and the dog got to chase rabbits and squirrels better medication than all that crap you get out of bottles!! Maybe if I go for another 8 mile walk I'll be able to sleep tonite! LOL!!

Larry

p.s. the alleve did keep my joint pain in check last nite
Posted 4/19/2019 5:31 PM (GMT 0)
Larry, i know it was a joke, but maybe you SHOULD walk again tonight. If not another 8 miles then 4vor 5. Exhaustion breeds sleep.

2 miles is my limit these days, which I attribute partly to a bad knee, but partly to the fatigue from low T. I’m fighting thru it, making sure I get 30 minutes a day if continuous cardio. Walking, elliptical, indoor bike, alternating.
Posted 4/20/2019 6:26 PM (GMT 0)
Labs this week - PSA still <.1 and T level up 2 to 18 - last 3 month Lupron was April 2018.

Very happy PSA still undetectable, but still not sure it's the castrate level or the SRT that's the reason.

Bobby Mac
Posted 4/20/2019 6:31 PM (GMT 0)
I’m in the same position, and as I said when I posted about it, take an undetectable any way you can get it.
Congrats Bobby.
✚ New Topic ✚ Reply
123456789