Remedy’s for side effects after switching to abiratone and prednisone

[Hereformydad2022]

My father is taking Lupron & xgeva & he is currently on 1000 mg abiratone and 25 mg prednisone

October psa1.8 (others in my bio)

November 2022- psa had been rising apparently under 2. Doc switched him to abiratone and prednisone. Dad says he’s feeling very fatigued( napping during day), his appetite is weakened (says he feels bloated , eats small meals), shortness of breath when he bends over and wakes up with a head cold ( maybe from fighting hot flashes at night?)

Anyone have any experience with these side affects?any helpful remedies or suggestions

Fatigue

Decreased appetite due to bloating

Shortness of breath when bending down

Head colds / stuffiness upon waking first thing in day

Wondering how I can support him until he goes back to doctor on January 3rd. I know he just wants to get through the holidays before paving the next path. Unfortunately he doesn’t give me all the info I have to string the bits I do have together. Appreciate everyone’s perspective on the above side effects.

Thank you✨🤘

[mrscruffy]

I have great success with working out daily, for me that is weight lifting. But even walking will do. For my diet I do intermittent fasting for 24 and 36 hours. Good luck, hope this helps. I do try to nap twice a day for 15 minutes

[Atdabeach]

I'm on Eligard, abiraterone, and prednisone too. I echo mrscruffy's comment about exercise. I start my day with a 2.5 mile walk, and do a couple of sessions a week with a personal trainer. I get tired more easily than before, and only mild hot flashes, so haven't had as much difficulty as your Dad, but everyone is different. Just keep encouraging him -- this treatment protocol may be hard on him, but it will keep the cancer at bay!

[FormulaRob]

your father only tells you bits and pieces as well? Good god it’s frustrating. I’m dealing with the same thing and sometimes I wonder if he’s keeping anything important from me.

Like his CT scan shows no organ spread or anything. Just prostate cancer Gleason score 9 with spread to 3 close by lymph nodes.

His bone scan two months ago shows no bone Mets. He’s redoing a bone scan this month to be sure nothing has changed. So with the results we currently have it sounds good yet the doctors are telling him he will need chemo. I thought chemo was only for distant spread. So either I’m not understanding the use of chemo OR there some new information on his situation that he has not made me aware of

Sorry to get side tracked on your post.. I just found that part so relatable and frustrating

[Jbooopin in reply to FormulaRob]

I thought chemo is for systemic treatment of distant metastasis? Rob go to the oncologist with your Dad if he is cool with it. It will help

[FormulaRob in reply to Jbooopin]

hoping there is another reason such as just playing it safe. Getting him let me come to appointments is nearly impossible. So I’m here just hoping what he tells me is accurate and I try to help from that stand point

[Hereformydad2022 in reply to FormulaRob]

yes just bits and pieces. It can be frustrating but I won’t give up my support to him. I hope you keep finding new ways to communicate with your dad and just enjoy all the moments together.

[Tall_Allen]

25 mg prednisone is an enormous dose. Why is he taking so much?

[Hereformydad2022 in reply to Tall_Allen]

Tall Allen you are right - I misspoke. He is on 5 mg 2x daily. What do you think about that?

[Tall_Allen in reply to Hereformydad2022]

That is standard.

[Seasid]

Maybe it is the best for your mental health if you stop helping him if he has high education.

I am an electrical engineer and I am very happy that my family is only pushing me to exercise and otherwise they are not involved with my treatment desission.

I am sending to them via WhatsApp the photos of every documents, results etc related to my health so they are informed. I really don't want them to think about my illness. I am more than capable of making my own decisions.

If I would want help I would ask for help, but at this moment I don't need it.

20 years ago my ex wife help me to make a decision to remove a gallbladder polyp with laparoscopic cholecystectomy. I am thankful for her for that, but now I am more involved with my own health as I am aware that I have a terminal illness and don't want that my family feel responsible after I go.

You should try to help him with advice but if he is capable making up his mind than you should not push too much.

Help him to get a second opinion or to enter into a clinical trial etc. But he should always make up his mind.

I just don't understand why they don't let you in to be present during the consultation with the oncologist?

I believe here in Australia it is possible.

[Hereformydad2022 in reply to Seasid]

hi!

I would be so happy to see every document he received. He likes to not think about his diagnosis says he’s living on borrowed time. I guess his doc gave a timeline 2.5 years ago. ( Ive learned from this group to toss timelines out window). I try to be respectful. My anxiety pushes me to poke and prod for information because I love him and want to help him. Sometimes he ponders with me and that’s when I perceive a green light to help. Your family is very lucky.

He is very capable of making up his mind. I like your advice about the second opinion or clinical trial. I received a recommendation for second opinion recently. How does one even find and enter clinical trials.

Yes, I can go to office appointments with hin except for that my father won’t let me join.

[Seasid in reply to Hereformydad2022]

I understand.

You can search for clinical trials with the clinical trials site surch engine, just put for example:

J591

and it will list all the trials with that word in, and than see the locations.

Or maybe you could ask in your hospital which clinical trials they are doing. I know it is not easy task.

Usually oncologists recommend only trials they are involved with, but you can contact any trial, probably even one in Australia (i am not sure but I believe so).

You could definitely help him, just be careful not to push too hard.

I wish you all the best. It is not easy to get into a clinical trial if you don't live close and don't have enough financial means.

You could get all his documents from the hospital archive.

[Seasid in reply to Seasid]

Here is an example how to use the search engine of the clinical trials site and get listed what you are interested in:

clinicaltrials.gov/ct2/resu...

[Schwah]

Exercise exercise exercise. Focus on resistance training. Proven to reduce side affects and to help your body fight the cancer. Better than any drug. Not easy but worth it.

Schwah