How long were you on Orgovyx, Xtandi, Talzenna? Fatigue unbearable

Posted by zjrc5439 @zjrc5439, Jul 28 9:40am

How long do you normally stay on these three(orgovyx, xtandi,talzenna). I've been on a couple of months and my fatigue is almost unbearable. Anyone have this experience?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for prostatssuck @prostatssuck

I started on Xtandi feb 24.
My PSA was 0 (zero) as of August 2024 and my xtandi was reduced to 40mg a day.
Still fatigued, brain fog and issues with short term memory . But small potatoes considering the alternative...
Aug 1, 2025 I'm replacing Xtandi with something called NUBEQA which is supposed to act like Xtandi but cut the immense fatigue in half.
My issue with Xtandi really has been an inability to focus but I'm learning to expect less of myself. Somethings that used to take an hour now seems to take 6 hours.... and that is my new norm.
I'm stage 4 Gleason score 9

Jump to this post

Is it possible for my nubeqa to be reduced if my next psa level is good? Of course I'm on injection ls every 3 months and have metastatic cancer so probably not

REPLY
Profile picture for asolidrock @asolidrock

I looked the wave devices. They have different ones. Which one do you have?

Jump to this post

They actually don’t have different ones. They just come in different colors.

The current device is called the Wave 2. It’s been around for a couple years now.

To set the device for the best configuration
Click the bottom left Feel button, scroll down to hot flashes and click it. Scroll down the hot flash cooler five click it, click on “hot flash cooler five” and hit start session. Click the Now round button where you hit start and it will stop the session. Now go back to the main feel screen. Hot flash cooler 5 Should be first in the list, hit the three dots in the right corner, Click on edit and make the temperature level maximum a five. Hit. Save Session. Want to repeat this for all night cool. Click the bottom left Feel button, scroll down to hot flashes and click it Pick all night cool, set The number of hours you want And start it. Then stop it and go back to the main feel screen all night cool Should be the first thing listed. Click the three dots select edit put the cooling on maximum all over to five and hit save session.

Now You have to set the buttons for what you want. To do that you go to settings/session presets. Click on “dotted button” and pick the hot flash five minute. It will probably be second in the list. Select it and hit OK.
Click blank button And select all night cool. Hit ok. DONE!

You now are configured hit the button with the raised dot two times and it will give you five minutes of cooling. Try hitting it the moment you start to feel the hot flash. It will come on a little bit and then will not get so intense.. When you’re ready to go to bed, double click the blank button and it will send cold waves. Occasionally you won’t even notice it at night, but it should stop flashes.

You can always reduce the cooling by following the above instructions.

REPLY
Profile picture for asolidrock @asolidrock

Is it possible for my nubeqa to be reduced if my next psa level is good? Of course I'm on injection ls every 3 months and have metastatic cancer so probably not

Jump to this post

Nubeqa is not given by injection. You are probably getting ADT by injection. Lupron or Eligard ADT Has three month shots.

If you were on ADT, and Nubeqa your PSA should stay undetectable. If it does not, there is a problem, unless you’ve only had radiation, it doesn’t always hit the bottom If you had radiation.

If your PSA stays undetectable for six months or more, your oncologist, may consider letting you stop getting the ADT injections and Nubeqa. If you are an Gleason eight or nine, however, you may need to stay on the drugs for 18 months to 2 years, For the least chance of remission.

if you are on Nubeqa it can Keep most patients undetectable, even without the ADT drug. But it is better to go with both drugs if you are new to treatment.

If you stop treatment with the drugs, then you can get PSA tests to see if the cancer comes. back.

REPLY
Profile picture for jeff Marchi @jeffmarc

They actually don’t have different ones. They just come in different colors.

The current device is called the Wave 2. It’s been around for a couple years now.

To set the device for the best configuration
Click the bottom left Feel button, scroll down to hot flashes and click it. Scroll down the hot flash cooler five click it, click on “hot flash cooler five” and hit start session. Click the Now round button where you hit start and it will stop the session. Now go back to the main feel screen. Hot flash cooler 5 Should be first in the list, hit the three dots in the right corner, Click on edit and make the temperature level maximum a five. Hit. Save Session. Want to repeat this for all night cool. Click the bottom left Feel button, scroll down to hot flashes and click it Pick all night cool, set The number of hours you want And start it. Then stop it and go back to the main feel screen all night cool Should be the first thing listed. Click the three dots select edit put the cooling on maximum all over to five and hit save session.

Now You have to set the buttons for what you want. To do that you go to settings/session presets. Click on “dotted button” and pick the hot flash five minute. It will probably be second in the list. Select it and hit OK.
Click blank button And select all night cool. Hit ok. DONE!

You now are configured hit the button with the raised dot two times and it will give you five minutes of cooling. Try hitting it the moment you start to feel the hot flash. It will come on a little bit and then will not get so intense.. When you’re ready to go to bed, double click the blank button and it will send cold waves. Occasionally you won’t even notice it at night, but it should stop flashes.

You can always reduce the cooling by following the above instructions.

Jump to this post

They sell them at different places and all are around 300.00 if they work it's worth it. I haven't had night sweating the past 2 nights. My sweating isn't real bad just my t-shirt feels a little damp.

REPLY
Profile picture for jeff Marchi @jeffmarc

Nubeqa is not given by injection. You are probably getting ADT by injection. Lupron or Eligard ADT Has three month shots.

If you were on ADT, and Nubeqa your PSA should stay undetectable. If it does not, there is a problem, unless you’ve only had radiation, it doesn’t always hit the bottom If you had radiation.

If your PSA stays undetectable for six months or more, your oncologist, may consider letting you stop getting the ADT injections and Nubeqa. If you are an Gleason eight or nine, however, you may need to stay on the drugs for 18 months to 2 years, For the least chance of remission.

if you are on Nubeqa it can Keep most patients undetectable, even without the ADT drug. But it is better to go with both drugs if you are new to treatment.

If you stop treatment with the drugs, then you can get PSA tests to see if the cancer comes. back.

Jump to this post

I don't have an oncologist. I just see a nurse practioner at the urologist office where i get my injections. Mary Bird Perkins is right down the road so I wandered why I don't have an oncologist.

REPLY
Profile picture for asolidrock @asolidrock

They sell them at different places and all are around 300.00 if they work it's worth it. I haven't had night sweating the past 2 nights. My sweating isn't real bad just my t-shirt feels a little damp.

Jump to this post

They’ve got a 60 day money back guarantee if you buy it directly from Embrlabs.

If you get real strong, hot flashes that make your head really wet dripping down of your eyes it may not work. You’ve got to be able to hit the thing a moment you Feel the flash Coming on

You could try their $20 a month rental.

REPLY
Profile picture for asolidrock @asolidrock

I don't have an oncologist. I just see a nurse practioner at the urologist office where i get my injections. Mary Bird Perkins is right down the road so I wandered why I don't have an oncologist.

Jump to this post

If your case requires you to be on those drugs, you should not be working with a urologist. urologists Love to make the money from giving you the shots.

You really need to get connected to a center of excellence or a Genito urinary oncologist. They are the oncologist who specialize in prostate cancer. Medical oncologist can’t do that because they cover all different types of cancer. I am not familiar with Mary Bird Perkins, but they appear to be a good first choice Since they have a prostate cancer canter.

They can guide your cancer to whatever treatment and doctors you need. They should be able to answer all of your questions.

REPLY
Profile picture for jeff Marchi @jeffmarc

If your case requires you to be on those drugs, you should not be working with a urologist. urologists Love to make the money from giving you the shots.

You really need to get connected to a center of excellence or a Genito urinary oncologist. They are the oncologist who specialize in prostate cancer. Medical oncologist can’t do that because they cover all different types of cancer. I am not familiar with Mary Bird Perkins, but they appear to be a good first choice Since they have a prostate cancer canter.

They can guide your cancer to whatever treatment and doctors you need. They should be able to answer all of your questions.

Jump to this post

❝Urologists love to make the money from giving you the shots.❞

+1 for the recommendation to see a cancer specialist (urologic, radiation, or medical oncologist, as the case may be).

Even in the U.S. though, urologists likely aren't all profit-motivated. They might not be paid per injection, especially if they're on salary as part of a hospital, medical center, or HMO rather than in private practice.

Across the border here in Ontario, OHIP pays family doctors by "roster" — the number of patients registered with them — rather than per visit, so there's no profit motive to overtreat. I think the oncologists at the Regional Cancer Centre are salaried as well, and the hospitals themselves get a fixed stipend based on the population they serve, rather than a per-visit fee.

At least in big cities, outpatients can get sent to "infusion centres" for injections of Firmagon, Lupron, etc. rather than having them in a doctor's office. My case was unusual, since I was initially in a wheelchair and it was winter, so Home Care trained my spouse to give me my monthly Firmagon injections at home, which she continued to do for over 2 years, until Orgovyx became available in Canada. I've never heard of anyone else getting ADT injections at home administered by a family member.

REPLY
Profile picture for jeff Marchi @jeffmarc

If your case requires you to be on those drugs, you should not be working with a urologist. urologists Love to make the money from giving you the shots.

You really need to get connected to a center of excellence or a Genito urinary oncologist. They are the oncologist who specialize in prostate cancer. Medical oncologist can’t do that because they cover all different types of cancer. I am not familiar with Mary Bird Perkins, but they appear to be a good first choice Since they have a prostate cancer canter.

They can guide your cancer to whatever treatment and doctors you need. They should be able to answer all of your questions.

Jump to this post

I agree. I would probably need a referral byy urologist and I'm not sure about that. I go for my injection on 9/24 so I'll ask for about seeing an oncologist. Thanks again and I hope you have a good day

REPLY
Profile picture for northoftheborder @northoftheborder

❝Urologists love to make the money from giving you the shots.❞

+1 for the recommendation to see a cancer specialist (urologic, radiation, or medical oncologist, as the case may be).

Even in the U.S. though, urologists likely aren't all profit-motivated. They might not be paid per injection, especially if they're on salary as part of a hospital, medical center, or HMO rather than in private practice.

Across the border here in Ontario, OHIP pays family doctors by "roster" — the number of patients registered with them — rather than per visit, so there's no profit motive to overtreat. I think the oncologists at the Regional Cancer Centre are salaried as well, and the hospitals themselves get a fixed stipend based on the population they serve, rather than a per-visit fee.

At least in big cities, outpatients can get sent to "infusion centres" for injections of Firmagon, Lupron, etc. rather than having them in a doctor's office. My case was unusual, since I was initially in a wheelchair and it was winter, so Home Care trained my spouse to give me my monthly Firmagon injections at home, which she continued to do for over 2 years, until Orgovyx became available in Canada. I've never heard of anyone else getting ADT injections at home administered by a family member.

Jump to this post

Got admit, I didn’t realize I was talking to somebody from Canada.

I was more concerned with the fact that he had a serious case of prostate cancer and appeared to only be working with the urologist.

I went to the same building my urologist was in to have a nurse give me a Lupron shot. I Didn’t see the urologist for years and I know he didn’t make any money off of it. But some doctors offices are different. In the last year or two they’ve opened up injection Centers, so the nurses no longer do Lupron shots at the previous location.

It appears that Medicare advantage does sort of the same thing that Canada is doing with the management of patient bills. I’ve been told that Medicare pays the medical service a fixed fee for each patient. The fee is based on the severity of the patient’s condition. In this case, there’s no additional money to be earned by doing extra services. This is one of those things that’s hard to find the details out about.

REPLY
Please sign in or register to post a reply.