Abiraterone plus Prednisone and 3 monthly injection failing now in 79 year old dad with mets to bone on NHS in UK.

[Lemonpower]

Hi Everyone,

This site has been a great comfort and source of knowledge for me. I'm travelling down a difficult road. I've had a brain tumour/brain surgery. My mother has severe dementia. My father was diagnosed with PC in 2018. He had prostate removed in 2019, but cancer had already spread outside prostate. he Did chemo for a year. Then was moved to another therapy, i can't remember what right now.

In 2021 his PSA started doubling again. He had mets to bone and lymph nodes.

In Feb 2022 he started abiraterone (1000mg) with prednisone and a three-monthly injection. His numbers at start went down and below .10, but the abiraterone was making him extremely fatigued so he halved his dose without consultng his doctor. He is in UK and on NHS. He has monthly blood tests. His results on recent tests have gone from. .01 to .03 to .47, and today his latest results are 1.3. After his results in March of .47 he went back up to full dose of abiraterone. But even after going back up his result today of 1.3 seeems to indicate full dose of abiraterone is now failing. Hespends much of day sleeping and struggles to walk. He is 79 and has two failing knees, and has become very stooped.

His NHS doctor says in 3 months time they will do a scan but might not pick up anything. Do PSMA scans pick up all new lesions?

From reading this site I already suggested to my dad to ask his doctor to switch his steroid from Prednisone to dexmethazone, but he forgot to ask that at his apppointment this am. He has become very forgetful.

He is a farmer, and keeps working as much as he can but sleeps alot. Other than the switch to Dex. Is there anything else he can try. From reading UK NHS guidelines, it seems patients who have taken abiraterone are not then able to switch to Xtandi under NHS guidelines. Unless someone else on this site has experienced otherwise.

Any advice to give me and him hope would be a blessing. Although we both recognise that 79 is a life well-lived.

🙏

[meowlicious99]

My dad was in similar position. He did have PSMA to verify progression though. pls take a look at my post with options.

healthunlocked.com/advanced....

[Lemonpower in reply to meowlicious99]

Thank you, I see you posted this 7 months ago. What option did you/your dad go with? I don't think my dad will want SBRT, the chemo wiped him out enough.

[meowlicious99 in reply to Lemonpower]

we were not able change anything yet so far due to personal circumstances. He is getting another PSMA this week. Hopefully start next treatment ( tbd) in next few weeks. His PSA has shot up to 5 though :/ .

[Lemonpower in reply to meowlicious99]

Which country are you in? We're in UK. I see many on this site with PSA way above 5. Some at 184 and worse. And I'm afraid I haven't done enough research to understand why some PC patients are better off wiht a PSA of 184 than someone wiht a PSA of 5. My dad had PSA of 7 something when he started Abiraterone in Feb 2022.🙏

[meowlicious99 in reply to Lemonpower]

we are in India. My understanding is that absolute PSA number is important but PSA velocity ( PSADT) is much more useful in figuring out how disease is progressing. Main goal is to stop progression.

[meowlicious99 in reply to Lemonpower]

my fathers genomic analysis ( somatic and germline) came back without any target-able mutations so PARPs were ruled out.

If your father is not able to tolerate chemo. They offer lu-177 here for patients too weak to tolerate chemo. Has much better side effect profile.

I would also consider getting tests to see if PARP ( olaprib ect) might do the trick.

[Lemonpower in reply to meowlicious99]

Thank you. I know Olaprib is available for breast cancer patinets on NHS I believe. I will check if available for PC patents on NHS.

[meowlicious99 in reply to Lemonpower]

Sounds good. I am not too familiar with NHS but olaparib and rucaparib are two PARPs used most frequently in PC if they find mutations they are looking for. Look up "PARP inhibition" in the search .

[Lemonpower in reply to meowlicious99]

Thank you. I will check parp inhibitor. I have just checked Lutetium -177. It is being offered at University Hospital of Southampton where my father is being treated. Maybe he will meet critieria to be treated with it. It's an excellent teaching hospital. I had brain surgery, and my brain tumour removed there.

Truly one of best hospitals in the UK, despite the UK Gov's lack of funding to NHS.

uhs.nhs.uk/Media/UHS-websit...

[maley2711 in reply to Lemonpower]

wouldn't more taxes be required to provide additional funding???

[Chask in reply to maley2711]

Not necessarily. Funding can come from savings in other budget baskets eg Defence, where enormous amounts of money is wasted, or politicians luxuries and benefits.

[maley2711 in reply to Chask]

good luck with that?

[Lemonpower in reply to maley2711]

This isn't a site for political debates. But NHS funding has not kept pace with inflation, and yes increasing taxes on the wealthy who mostly opt for private healthcare anyway would be needed. And Brexit hasn't exactly helped the NHS despite Boris's 2016 campaign bus proclaiming otherwise, that has now proven to be patently false.

[Darryl Partner]

Malecare is honored to participate in your care

[Lemonpower in reply to Darryl]

Thank you for this site and the wealth of information and hope it brings for patients and family, and possibly even healthcare professionals.

[Hidden]

Dear loving Lemonpower! You are a blessing to your father .. we can’t be expected to fully figure out pc . Not even modern medicine, has done this yet . We all search for answers here . Lots of good people all caught in the trap ..I saw my dad dwindle away at 71 after an rp at 70 . It hurt me to see him suffer so . This is love . I was far away from him at the time and unable to see him . Spend time with dad as much as you can .Ask questions here .. Do anything to comfort him or relief any of his woes.. compassion rules . 🙏🏼❤️

[Tall_Allen]

Hopefully, the switch to dexamethasone will give him more time on Zytiga. If the scan finds any distant mets that are PSMA-avid, he can try Pluvicto.

[Lemonpower in reply to Tall_Allen]

Thank you for your input and for all your helpful comments here on other posts. I know your insight into this awful illness is extremely respected on this site.

[jfoesq in reply to Tall_Allen]

Tall_Allen - I just wrote a post about how my PSA rose from <.O5, to 05 and then .06 one month later after being on Lupron and Zytiga for 10 years. Assuming a new scan shows progression in one or more of my several bone Mets, I assume DEX will be an option for me. Does that sound right to you? What are the downsides to switching from Prednisone to DEX? Any other thoughts are greatly appreciated.

[Tall_Allen in reply to jfoesq]

I just responded there. Don't get ahead of yourself.

[Guber]

If dexamethasone is added what is the dosage?

[rsgdmd]

If he is on 5mg prednisone, the switch would be to 0.5 mg dexamethasone. I made the switch 2 weeks ago. Will see in another 2 weeks if making a difference.

[Gearhead in reply to rsgdmd]

Please keep us informed.

[Lemonpower in reply to rsgdmd]

Any side effects caused by switch. Was it a simple switch or did you have to down-dose?

[rsgdmd in reply to Lemonpower]

Simple switch as dex is 10X stronger than prednisone, so get equivilent amount of steroid. No changes in SE.

[Tonyliv]

I’m in the same boat, psa rising, uk based. Next standard of care is cabitaxel; most tolerate it better than docetaxel. I switched to dexmethadone and it dropped my psa for one month - but every little helps.

[Lemonpower in reply to Tonyliv]

If you feel like shariing would be helpful to know how many months after PSA started rising did you switched to the Dex. What was your PSA when you switched.? Thank you.

[rsgdmd in reply to Lemonpower]

My PSA in mid Jan. was 0.48 (3 mo. after final chemo) and by mid March was 1.16. I raised the idea & my doc agreed was worth trying. bjui-journals.onlinelibrary... Will post how it's working after my next labs, though not sure how long might take to see results.

[Lemonpower in reply to rsgdmd]

Thank you. I had already pinned that article from an earlier post. Would be grateful if you would update us on how switch to Dex works. 🙏

[rsgdmd in reply to Lemonpower]

Will do & hoping for the best. Thanks.

[Tonyliv in reply to Lemonpower]

Sorry for the late reply; just back from holiday. Had radiotherapy at the start of 2021, a nadir of 0.31, which grew to 1.2 by April 2022. Changed to dex then, but it only dropped for a month. That said, it would have continued growing, so the time benefit was probably 3-4 months. Every little helps.

[60Hanse]

You can get generic xtandi from India for about 250 dollars a month.

[BrentW]

I am with the NHS. I was prescribed abiraterone until it failed, and switched to Xtandi. The side effects are awful, fatigue being the least of my concerns. Rigid muscles, aching joints, nausea, taut scalp, to name a few. I have to tell myself that it is better than being in a wooden box, but I struggle at times. We have had to cancel two holidays, both within the UK, as I simply haven't been able to face the travel. I know that might not seem a big deal, but something to make life seem worthwhile would be welcome right now.

[Lemonpower in reply to BrentW]

Lutetium-177 is available on NHS, but not everywhere. I just discovered this yesterday. My father is being treated at Southampton General so I will ask if the treatment that is available there is suitable for him. I'm not sure where you are located but Southampton is a teaching hospital, and for some reason does have access to cutting edge treatments on the NHS.

uhs.nhs.uk/Media/UHS-websit...

[BrentW in reply to Lemonpower]

Thank you for this, Lemonpower. I shall hope that I am considered to be within the catchment area.

[Lemonpower in reply to BrentW]

It would be so much less stressful if all who needed/met the criteria for latest therapies had acccess to them. Here's hoping both you and my father meet requirements. I spoke to the unit at the General this am. They have two Lu-177 treatments available, one on NHS, one that is not, depending on your PC history.

[FionaElbourne]

hi my husband is in a similar situation, we are in Glasgow he is starting Lutetium 177 tomorrow at the Wellington hospital in London. We are paying privately as Lutetium is no longer available on the NHS. You may be lucky and get on a trial . My husband also had a prostate biopsy so they can test for BRACA2 gene which means he could start on Olaparib once Lutetium is finished. We are still waiting the result. Olaparib is also not available on NHS in England but is available in Scotland. New drugs get added so your oncologist should be able to guide you on what is coming. My husband also had Xtandi and it worked for 18 months.

[Lemonpower in reply to FionaElbourne]

I'm a bit confused by your comment that LU-177 is not available on NHS in England. I've just called Southampton General Hospital where my father is being treated and Lutetium-177 is available on NHS there, but not everywhere. I just discovered this yesterday. My father is being treated at Southampton General so I will ask if the treatment available there is suitable for my father. I'm not sure where you are located but Southampton is a teaching hospital, and for some reason does have access to cutting edge treatments on the NHS.

uhs.nhs.uk/Media/UHS-websit...

[Benkaymel in reply to Lemonpower]

I'm on NHS treatment under University Hospitals Sussex and Lu-177 is not currently available here. I believe it was for a short time last year but due to cost, is no longer. Interesting to hear that Southampton does offer it - I assume it's only for mCRPC?

[Lemonpower in reply to Benkaymel]

I just spoke to Southampton General. I am a bit confused. One Lu-177 treatment is available on NHS if you meet criteria, another is not. The hospital has both. There is a number for their nuclear medicine team 023 8120 6627.

[FionaElbourne in reply to Lemonpower]

Hi Thankyou we are based in Scotland and we’re advised by our oncologist that it was not available on NHS in UK unless as part of a trial. I am so glad your father will have access to it if he is suitable.

[dmt1121]

You need to attend all of his appointments to advocate for him.

[gsun in reply to dmt1121]

yes this is very important.

[Lemonpower in reply to dmt1121]

I know, my dad has been reistant to this. I had asked him to ask the doctor about the switch to Dex before he spoke to her yesterday. Of course, then he got bad news about his PSA and forgot. He's just one of these older men from a different generation who for some reason is uncomfortable having people attend the doctors with him. I'm going to try and insist that if not me, then he should at least allow my mum's part-time carer to help. It's all such a struggle. If I'd of had it my way, he'd be on Dex already, and I'd have the doctor looking into his eligibility for Lu-177 . I wil try to get him to call doctor's secretary and ask about 1. immediate switch to Dex 2. Lu-177. So draining. And, my mum, poor thing has no concept of what's happening.

[dmt1121 in reply to Lemonpower]

I totally understand your predicament, having seen this before. However, if you can convince your dad of the value of having someone accompany him to appointments, that may make a huge difference in understanding what's going on and why.

Good luck.

[j-o-h-n]

I know everyone here wishes your dear DAD success and that he like a Timex keeps on Ticking. I am glad you survived your brain tumor operation and that you are helping both your Mum and Your Dad. God will bless you for that... Sincerely,

j-o-h-n <===<<< Senior management is about to spike my spikes....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/05/2023 2:14 PM DST

[Lemonpower in reply to j-o-h-n]

🙏I would not be able to live with myself after, if I hadn't done all I could for both of them. There are other family members, but everything falls to me. I have given up asking them to help, easier to do just do its myself.

[Benkaymel in reply to Lemonpower]

Your parents are so very lucky to have you caring for them.

[Lemonpower in reply to Benkaymel]

Thank you🙏

[lowT163]

keep working.

[Lemonpower]

Thanks. Sadly my dad is really old school. I asked him on Thursday to let me attend his doctors meeting. He got angry and said "no". It comes from a belief that in the 80's when an aunt of his died at a young age, early 50s, of stomach cancer, that her doctors let her die because, members of the family asked doctors to do more to help her. So all i can do is printe out the science studies for Lu-177 and ask him to ask doctor himself, using literature i provide him.