1. < Prostate Cancer

Zytiga and Orgovyx: What helps side effects, fatigue and disinterest?

Posted by jane55 @jane55, Aug 10, 2023

Hi,
My husband, who is 71 y/o, has recurrent prostate cancer, after 7 years of no treatment. He underwent a proctectomy 7 years ago and has 1 lymph node involvement. In January, he had COVID which left him tired, no smell or taste. His PET scan in February showed lymph node involvement in the pelvic area with a PSA of 9. In April, he was started on hormonal therapy (zytiga and orgovyx). First month, he did not exhibit any symptoms, second month he started with mild hot flashes at night. PSA is undetectable (0.01) after 2 months of treatment. However, after he takes the Zytiga mid-afternoon he is very anxious, emotional, and continues to be exhausted.
He is depressed and his appetite has decreased. He lives a sedentary life. He is always tired and not interested in things that brought him happiness. He is on the computer most of the day. When we go out, he comes home to rest. Is anyone experiencing these side effects? Any recommendations would be appreciated.

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samidh | @samidh | Nov 14, 2023
In reply to @sixto "Billfarm: I am on Zytiga 1000mg and prednisone 5mg on an empty stomach every day since..." + (show)
@sixto

Billfarm:
I am on Zytiga 1000mg and prednisone 5mg on an empty stomach every day since Oct. 16, 2023. Minor fatigue and no other symptoms. Also Lupron injection 22.5mg injection every 3 months with the first injection October 9, 2023.
Stage 4 spread to lymph nodes on chest,neck and lungs.
Chemo to commence on November 17 and every 3 weeks thereafter - 6 treatments.
Wish you the best.

Jump to this post

Short background:
I'm almost 74. Gleason 8, metastasis to various lymph nodes, seminal vesicals, bladder neck. I am on Abiraterone 1000mg (empty stomach) since Oct 2022 with Prednisolone 10mg (pred reduced to 5 mg since the last 5 months or so). I'm also on Goserelin 3 monthly (the last time I was given Leoprolide most probably because my treating hospital ran out off Goserelin). Jan-Feb this year I had 20 factions of Tomotherapy. My PSA now is 0.01. I've never got my testosterone tested.

I have several side effects (listed below) but I do not know whether Abiraterone is the cause or Goserelin (or for that matter Prednisolone):
* Total loss of libido
* Fatigue (almost always)
* Hot flashes (that I feel are more pronounced for a few weeks after injection of Gosarelin/Leuprplide)
* Tremendous increase in abdominal fat (I look obscene now)
* Signs of Gynecomastia (something that I have not found anyone discussing in this forum, which gives me the impression that I've been singled out for this reaction 🙂 )
* Perceptible loss of stamina (at times I feel tired just wiping myself after a bath)
* Recently started having pain in the hip bone, lower back, chest (pain gets relieved with self-massaging) (I'm meeting my doctor in 2 weeks)
* Dry Mouth (when it happens, I suck on a boiled sweet)
* Incomplete voiding (especially at night, this gets better as the day goes by)
* Fluid retention in the body

What the drugs have not been able to do is kill my smile and love for life. I'm enjoying life as much as before (barring a few activities that I just can't do). I ride by bike to the market, much to the consternation of my wifey; one has to see for themselves what driving conditions are in jam-packed Metros in India! I go for walks (now maybe only a kilometer or two where even 3 months ago I used to walk briskly for 5 kms). And lastly, I partake in the small pleasure of 60ml of Single Malt every evening (please, I'm not a good example to follow), devoid of which maybe, just maybe, I could have had lesser reactions to the drugs. But then, one has to, individually, settle for a balance between quality and quantity of life.

REPLY
2 replies
joecontheroad | @joecontheroad | Nov 15, 2023
In reply to @samidh "Short background: I'm almost 74. Gleason 8, metastasis to various lymph nodes, seminal vesicals, bladder neck...." + (show)
@samidh

Short background:
I'm almost 74. Gleason 8, metastasis to various lymph nodes, seminal vesicals, bladder neck. I am on Abiraterone 1000mg (empty stomach) since Oct 2022 with Prednisolone 10mg (pred reduced to 5 mg since the last 5 months or so). I'm also on Goserelin 3 monthly (the last time I was given Leoprolide most probably because my treating hospital ran out off Goserelin). Jan-Feb this year I had 20 factions of Tomotherapy. My PSA now is 0.01. I've never got my testosterone tested.

I have several side effects (listed below) but I do not know whether Abiraterone is the cause or Goserelin (or for that matter Prednisolone):
* Total loss of libido
* Fatigue (almost always)
* Hot flashes (that I feel are more pronounced for a few weeks after injection of Gosarelin/Leuprplide)
* Tremendous increase in abdominal fat (I look obscene now)
* Signs of Gynecomastia (something that I have not found anyone discussing in this forum, which gives me the impression that I've been singled out for this reaction 🙂 )
* Perceptible loss of stamina (at times I feel tired just wiping myself after a bath)
* Recently started having pain in the hip bone, lower back, chest (pain gets relieved with self-massaging) (I'm meeting my doctor in 2 weeks)
* Dry Mouth (when it happens, I suck on a boiled sweet)
* Incomplete voiding (especially at night, this gets better as the day goes by)
* Fluid retention in the body

What the drugs have not been able to do is kill my smile and love for life. I'm enjoying life as much as before (barring a few activities that I just can't do). I ride by bike to the market, much to the consternation of my wifey; one has to see for themselves what driving conditions are in jam-packed Metros in India! I go for walks (now maybe only a kilometer or two where even 3 months ago I used to walk briskly for 5 kms). And lastly, I partake in the small pleasure of 60ml of Single Malt every evening (please, I'm not a good example to follow), devoid of which maybe, just maybe, I could have had lesser reactions to the drugs. But then, one has to, individually, settle for a balance between quality and quantity of life.

Jump to this post

Deleted by original poster in favor of a Direct Message.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 2023
In reply to @lmacfive "My husband is 71 and underwent prostate surgery in April. He has been on Zytiga and..." + (show)
@lmacfive

My husband is 71 and underwent prostate surgery in April. He has been on Zytiga and Predisone for 4 months now. We have been married for 44 years.
But he is now focusing on events in my life that happened before we were married. He can’t seem to let them go. I believe we are headed for divorce, and I don’t know what to do to save our marriage. I’m trying to be brave and understanding, but he won’t hardly even talk to me. And he won’t talk to his doctor. Any advice? I don’t feel like I can share this with my kids or any friends.

Jump to this post

@lmacfive, I'm glad you shared this. It's tough.
Have you considered talking with an oncology social worker? They will have seen this before and may be able to give you some direction, whether you speak with them with your husband or alone.

Here's more information about oncology social work:
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Your oncologist or member of his cancer team can refer you to social work.

REPLY
samidh | @samidh | Nov 15, 2023
In reply to @joecontheroad "Deleted by original poster in favor of a Direct Message." + (show)
@joecontheroad

Deleted by original poster in favor of a Direct Message.

Jump to this post

"(I know it's still there, though: it still does its one function — multiple times overnight! 😩 )"
Wow! I really missed out this point. And I'm from Calcutta. Thanks pal for this write up. It's really made my day. Yes, we should all keep smiling 🙂

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badeyeaz | @badeyeaz | Nov 15, 2023

Thank you guys. I haven’t seen much on Zytiga side effects. I’m 79 and diagnosed with Gleason 8 and infiltration to one lymph note and one seminal vesicle. I am just finishing up my ADT phase of six months of degarelix, 1 shot every 28 days. PSA has gone from 12.1 to 0.47. Next step is radiation therapy, Hypofractionated. That’s five treatments, every other day (M, W, F, M, W). My medical oncologist has offered to augment my treatment with Zytiga, so I was wondering what the side effects would be. Thanks for your input. Very helpful.

REPLY
badeyeaz | @badeyeaz | Nov 16, 2023
In reply to @samidh "Short background: I'm almost 74. Gleason 8, metastasis to various lymph nodes, seminal vesicals, bladder neck...." + (show)
@samidh

Short background:
I'm almost 74. Gleason 8, metastasis to various lymph nodes, seminal vesicals, bladder neck. I am on Abiraterone 1000mg (empty stomach) since Oct 2022 with Prednisolone 10mg (pred reduced to 5 mg since the last 5 months or so). I'm also on Goserelin 3 monthly (the last time I was given Leoprolide most probably because my treating hospital ran out off Goserelin). Jan-Feb this year I had 20 factions of Tomotherapy. My PSA now is 0.01. I've never got my testosterone tested.

I have several side effects (listed below) but I do not know whether Abiraterone is the cause or Goserelin (or for that matter Prednisolone):
* Total loss of libido
* Fatigue (almost always)
* Hot flashes (that I feel are more pronounced for a few weeks after injection of Gosarelin/Leuprplide)
* Tremendous increase in abdominal fat (I look obscene now)
* Signs of Gynecomastia (something that I have not found anyone discussing in this forum, which gives me the impression that I've been singled out for this reaction 🙂 )
* Perceptible loss of stamina (at times I feel tired just wiping myself after a bath)
* Recently started having pain in the hip bone, lower back, chest (pain gets relieved with self-massaging) (I'm meeting my doctor in 2 weeks)
* Dry Mouth (when it happens, I suck on a boiled sweet)
* Incomplete voiding (especially at night, this gets better as the day goes by)
* Fluid retention in the body

What the drugs have not been able to do is kill my smile and love for life. I'm enjoying life as much as before (barring a few activities that I just can't do). I ride by bike to the market, much to the consternation of my wifey; one has to see for themselves what driving conditions are in jam-packed Metros in India! I go for walks (now maybe only a kilometer or two where even 3 months ago I used to walk briskly for 5 kms). And lastly, I partake in the small pleasure of 60ml of Single Malt every evening (please, I'm not a good example to follow), devoid of which maybe, just maybe, I could have had lesser reactions to the drugs. But then, one has to, individually, settle for a balance between quality and quantity of life.

Jump to this post

Thanks for that comprehensive list of side effects. It helps me make my decision to go on Zytiga as recommended by my med onc. I think one of your best cures is the single malt. I’m rather partial to that myself, but so rarely used. Indeed, your attitude is your best friend. Hang in there.

REPLY
philnob | @philnob | Nov 16, 2023

Hello,
I have been taking Orgovyx for just over 2 years when my PSA number started rising. My Oncologist recommended that I start taking Xtandi in addition to the Orgovyx, and after two weeks I started to feel extremely lethargic.
On the advice of my Oncologist I will stop Xtandi for four days, check in at the portal, and resume taking 3 tablets of Xtandi daily instead of 4. I don’t know if this helps, but I will keep you posted.
All the best to your husband.

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mikejf | @mikejf | Apr 29 1:50pm

I’m a 73 year old man with APC. Have experienced 5 years of no caver growth since my diagnosis 2018. Had chemo infusions in 2019 followed by Lupron injections then Orgovyx last 3 years. I have experienced exactly the same symptoms. I have found the only thing that works is regular intense exercise. It is amazingly successful This is very challenging since every fiber of
Your being fights against any activity because of the Orgovyx. Good luck

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