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?

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Profile picture for jeff Marchi @jeffmarc

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.

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I'm not sure where the OP lives.

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Profile picture for asolidrock @asolidrock

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

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Before my first injection I kept trying to get an appt with MBP for my shot; now I no why they never called just seems odd 2 me that pcp would give it and I'm disappointed I didn't my urologist who dud my prostrate surgery; but it's like that everywhere u don't see acdr u see a pcp

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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.

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I got a question if you do mind. As you know i have mestatatic prostrate cancer and its in my pelvis and clavicle. I'm on nubeqa and injections every 3 months. I noticed as i walk now i have pain in my lower back. Guess I was wandering if the cancer is deteriorating by bones causing the pain

Thanks

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Profile picture for asolidrock @asolidrock

I got a question if you do mind. As you know i have mestatatic prostrate cancer and its in my pelvis and clavicle. I'm on nubeqa and injections every 3 months. I noticed as i walk now i have pain in my lower back. Guess I was wandering if the cancer is deteriorating by bones causing the pain

Thanks

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Yes, cancer in the bones can cause considerable pain. That was my first warning of the metastasis to my spine, though it was misdiagnosed for a month until I started to lose my balance and the feeling in my toes, and limped into the emergency room determined not to leave until they found a solution (unfortunately, it was 3 1/2 months before I made it home again).

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Profile picture for asolidrock @asolidrock

I got a question if you do mind. As you know i have mestatatic prostrate cancer and its in my pelvis and clavicle. I'm on nubeqa and injections every 3 months. I noticed as i walk now i have pain in my lower back. Guess I was wandering if the cancer is deteriorating by bones causing the pain

Thanks

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As @northoftheborder says, what you are describing could be a result of advanced prostate cancer to the spine.

On the other hand, I have on and off bouts with lower back pain, But I’ve had it for over 25 years, Way before the cancer. I have a belt I can put on, and within a day it normally makes my back stop hurting and I’m back to normal for another six months or longer.

So the real question is, is your lower back pain a common problem that many men have or is it related to prostate cancer?. Do you feel anything Going down your legs when you’re having this lower back issue, it can cause sciatica.

You could talk to your doctor about doing an MRI, a PSMA pet scan probably won’t find anything since your PSA is so low. A CT scan might work as well if they’ve got one to compare it with. This is something you have to talk to your doctor about. It may involve an Orthopedic MD.

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Yes I have a curved spine. I had issues offban on for years, although yesterday when I was walking I felt like i was out of balance I'm ok today when to workout and the pain is a lot less. Anyways I'm getting appt with my "pcp" to hopefully get an mri. I don't have pain or tingling in my legs; hope all this makes sense. Thanks for listening

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Profile picture for northoftheborder @northoftheborder

Yes, cancer in the bones can cause considerable pain. That was my first warning of the metastasis to my spine, though it was misdiagnosed for a month until I started to lose my balance and the feeling in my toes, and limped into the emergency room determined not to leave until they found a solution (unfortunately, it was 3 1/2 months before I made it home again).

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Goodness gracious health isn't what it used to be I appreciate your tenacity and getting to the bottom of it all

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Profile picture for jeff Marchi @jeffmarc

As @northoftheborder says, what you are describing could be a result of advanced prostate cancer to the spine.

On the other hand, I have on and off bouts with lower back pain, But I’ve had it for over 25 years, Way before the cancer. I have a belt I can put on, and within a day it normally makes my back stop hurting and I’m back to normal for another six months or longer.

So the real question is, is your lower back pain a common problem that many men have or is it related to prostate cancer?. Do you feel anything Going down your legs when you’re having this lower back issue, it can cause sciatica.

You could talk to your doctor about doing an MRI, a PSMA pet scan probably won’t find anything since your PSA is so low. A CT scan might work as well if they’ve got one to compare it with. This is something you have to talk to your doctor about. It may involve an Orthopedic MD.

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I had this pain before my PET scan course that doesn't mean anything I suppose.

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Profile picture for asolidrock @asolidrock

I had this pain before my PET scan course that doesn't mean anything I suppose.

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My back pain was usually in my lower back before, and was either muscle strain or a herniated disc. I learned to recognise those very well. The new pain was in my middle spine, and often radiated to my shoulder as it gradually compressed the nerves in my spinal cord. It was very different, but I didn't know what it was at first, and thought maybe I'd just strained myself canoeing over the summer.

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Profile picture for asolidrock @asolidrock

I had this pain before my PET scan course that doesn't mean anything I suppose.

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Did you have this, occasionally, before you actually had any prostate cancer treatment?

The PET scan won’t cause something like this.

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