Order of treatment?

[NLondon43]

My husband has been on Abiraterone for 5 months during which time his PSA has risen,. Before that he had had 6 rounds of Docetaxel which also saw his PSA rise. Having waited for 6 weeks to have a biopsy and get the results for neuroendocrine PC (he didn’t have it) his oncologist has said he can either have another chemo (Cabazitaxel or Carboplatin) or Radium 223. We feel that while he hasn’t got any visceral tumours then radium would be best to do first and chemo later. But would this make his bones too weak to cope with chemo afterwards?

[JohnInTheMiddle]

Docetaxel and Abiraterone are great - doublet therapy of chemo plus ARPI. But no ADT? Typically a monthly or longer recurring injection such as Lupron or Firmagon? That would give you a triplet therapy. And the clinical studies are fantastic. But it's not standard of care yet. But ADT has been around for half a century and is the foundation typically of any kind of care of prostate cancer. And it can work very quickly. Is there some reason why your husband was not offered ADT? Or maybe you just didn't mention it?

[NLondon43 in reply to JohnInTheMiddle]

Hi JohnInTheMiddle

Thank you for your reply and yes,, he’s been on ADT from the moment he was diagnosed, it seems so standard a treatment that I didn’t think to mention it so sorry about that.

A

[Flaxseed]

Hi there, I agree totally with JohnInTheMiddle… I had radiotherapy & chemotherapy but they have been in addition to a three monthly hormone injection (prostap - which I think is ‘Leuprorelin’).

I don’t know if it is appropriate in your husbands case but I am ‘supplementing’ my treatment by doing a 4-day fast every month.

When I was first given the Abiraterone (I had had radiotherapy on my neck, chemotherapy and also the hormone injection every three months - my PSA came down from a staggering 2,681 to a low of 0.54; unfortunately it started to rise and reached 2.8 before I was given the Abiraterone pills. They had tried more radiotherapy during the rise to 2.8 but it didn’t do anything noticeable. With the Abiraterone, my monthly PSA readings went: 1.6, 1.3, 1.2, 1.3. So I decided to fast before my next blood test. The next result was 0.99 a month later.

So I continued doing the 4-day fast every month and my monthly results continued down: 0.88, 0,69, 0.64. I was put on quarterly blood tests but I maintained my monthly 4-day fast regime and after that quarter my last blood test got me a new all time low of 0.52)

Like I say, it might not be appropriate for your husband but it seems to be supplementing my treatment.

I have a ‘half’ breakfast every day during the fast because I have to take my prednisone (goes with the Abiraterone) with food - but that is only about 350 calories (20g porridge + 20g ground flaxseed made with water… very gloopy! With 40g blueberries and a small banana; a small glass of POM - pomegranate juice- and a black coffee!)

It’s a tough regime - but I am a bit of a walking experiment!!! It seems to be working - and while my results keep coming good, I’ll keep on doing it).

Between fasts I eat normally - all be it that I follow a plant based diet - I did that change on my birthday in 2019 when my wife got me a book titled “how not to die”!!!! (I was diagnosed in September 2018 aged 56 and given 1-3 months by the way)

Like I say it may not help but when you start to run out of options you (well ‘ I ‘ ) will try anything.

I did a lot of reading about fasting before I tried it. I know it is meant to be beneficial to fast ahead of chemotherapy - it makes the chemotherapy more effective with less side effects (in most cases). There are trials results that back that up.

Anyway, that is my story - I don’t know if that is of any use to your husband - but like JohnInTheMiddle said: make sure your husband is getting ADT along with the Abiraterone….

[dhccpa in reply to Flaxseed]

You fast the four days immediately leading into every blood test?

[Flaxseed in reply to dhccpa]

Hi there, yes, I was fasting for 4-days every month leading into every blood test - but now my blood tests are quarterly but I still fast for 4-days every month. I have been asked whether fasting before a blood test is skewing the results - but the downward trend month on month and now after 3 months suggests not. I have told my Oncologist what I am doing and all of my blood results (potassium levels, calcium, full blood count etc.) all remain in the right place.

The research I have done suggests that healthy cells go into a kind of protective state but the cancer cells 'panic'. After 2 days the body stops producing glycerin which is what the cancer cells feed on - so allegedly they are weakened and some die off.

As I said above, it seems to be working with the treatment - and while my PSA continues to fall, I will continue to do it.

[dhccpa in reply to Flaxseed]

Thanks. I've done a number of 2-day water only fasts, and one 10-day one a few years ago. I've thought about doing one the day before each test (or maybe just black coffee). Stop, say, Tuesday after dinner, do blood test early Thursday morning, the resume Thursday lunch. Not quite two days. Still kicking something like that around.

[Flaxseed in reply to dhccpa]

If you decide to give it a go, I would certainly recommend trying to go for 2+ days. I believe that the 2-days minimum reduces/stops the production of glycerin so starves the cancer; so in my mind days 3 & 4 are cancer cell weakening/killing days!

I am not a medical expert so this is all based on reading papers and stuff - but it seems to be working for me.

There is lots of research out there to decide on whether it is right for you.

I do it in addition to the medical treatments I am on as I am well aware that they are my primary line of defence.

Please let me know if you try it and what your results are like?

Thank you!

[dhccpa in reply to Flaxseed]

Will do. I'm on regular treatment as well.

[Seasid in reply to dhccpa]

You should not do a longer fast than a three day fast. A longer than three day fast can cause electrolyte imbalance. I was told that by Misha a registra from Canada.

[dhccpa in reply to Seasid]

I've only done one longer than 3 days so far, back in 2019.

[skiingfiend]

Based on your description and bio and the fact you're in the UK, I am assuming your husband is mCRPC, failed the 1st and 2nd lines of treatment, receiving ADT and a bone sparing agent.

I think the question you ask and you're analysis is spot on. The risk you run by delaying radium is the development of visceral metastasis and then the radium option is off the table. Radium is a well tolerated with low levels of grade 3-4 adverse events.

Watch this short video interview (6 min) and they discuss moving radium earlier in the treatment cycle.

APCCC 2022: Patient Selection for Treatment with Radium 223 - Tanya Dorff and Alicia Morgan

urotoday.com/video-lectures...

Also read this summary of a Neal Shore presentation at the same conference that offers more hard data, a stratification flowchart and MC curves: radium-223 mOS is 14.4 months post docetaxel.

APCCC 2022: Is There Still a Role for Radium-223?

urotoday.com/conference-hig...

I hope this is useful input into your decision making process. Hopefully Tall_Allen or someone more experienced than I, will chime in and provide more definitive advice or expanded treatment options.

Disclaimer: I'm not qualified to provide medical or treatment advice. If you find this material useful, Please review it with your MO.

[Flaxseed in reply to skiingfiend]

Hi Skiingfiend - that is also all good sound advice. One thing that might be worth adding is that there is an alternative to Radium 223 called Lutetium 177 - that appears to be kinda newer and allegedly has less side effects? Trouble is that it was available on the NHS (I believe) but only briefly and now it is only available under private care.

I researched this ready for when I am in the same boat of nothing else working...

It is available in Germany at something like $8k a go (and you need 4-6 lots I believe?) - so not cheap, but about half the price of the Marsden here in the UK.

There is an article on the 'Prostate Cancer UK' website that might be of interest - prostatecanceruk.org/about-...

[skiingfiend in reply to Flaxseed]

Yes, Pluvicto is an approved drug but not covered under the NHS. If the poster in question has the private resources to pursue this option and this is a direction they want to go in, they should consult with their MO.

There is a large thread from last week that goes into this in detail.

Thanks

Edit:

Xofigo and Pluvicto and not substitutes for each other, they have different mechanisms of action, and both can be used in a treatment plan.

[Flaxseed in reply to skiingfiend]

Agreed! I had a friend who underwent the Radium 223 and while it did some good (and he is still going some 10 - 12 months later) the side effects left him very tired and it has had a permanent effect on his white blood cell count (I believe). Unfortunately he has reached the place where the Oncologist has said there are no further treatment options available for him (he is 84 and has been battling prostate cancer for at least 10 years).

I realise that all cases are different - and the poster really needs to get proper medical advice whichever way they decide to go.

That said, this is a great forum for people to share their experiences.

I hope Tall_Allen sees this thread and offers up his views -as you said above he is a respected poster on here.

[NLondon43 in reply to Flaxseed]

Hi Flaxseed

Thanks for your response, it is the permanence of the side effects of radium 223 compared to the relatively temporary side effects of chemo that concern us most. We have had medical advice from 2 sources on chemo vs’d radium 223, it’s just that it’s been contradictory. When a treatment is often given at a late stage it’s not always an accurate reflection of its efficacy as the patient is already compromised.

A

[Flaxseed in reply to NLondon43]

Hi there,

Yes, totally agree.

I had Chemo very soon after I was diagnosed (in 2018 aged 56) and had some side effects (like the obvious hair loss - but it grew back; on my head at least!) and some tiredness around each session etc - but all relatively tolerable. The radium 223 does seem to have had quite an effect on my friend - he felt better for it but the side effects have not been great; he has had a number of blood transfusions since to try to help him with his blood cell situation and the fatigue but the 'help' has only been temporary - but as you point out, it is at a late stage and he may not be the best case.

The reported side effects of the Radium 223 was the reason I mentioned Lutetium 177 - it is also a radiation treatment that reportedly has a lot less side effects and appears to be better at targeting the cancer cells - including those in the bones.

The down side is that unless you can find a trial to get it, it has to be got privately - and it isn't cheap.

I mentioned the fasting as something that might be worth considering as well - it might help while you are still researching...?

Anyway, I wish you both all the very best and hope you get the help/advice and outcome that you are seeking.

[NLondon43 in reply to Flaxseed]

Thank you.

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

for skiingfiend

Disclaimer: I'm not qualified to provide medical or treatment advice and I'm a terrible skier.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/25/2023 6:23 PM EST

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

I'm sure you'd do fine, 90% of skiing is sitting in the bar at the end of the day enjoying a cold one. You're already an expert and didn't even realize it. 😀

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

Oh wow........ it's like the 19th hole in golf.......... nowya tell me.........kept in the dark for 87 years..........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/23/2023 10:11 PM EST

[NLondon43 in reply to skiingfiend]

Hi skiingfiend

Thank you so much for your response, we both felt encouraged by your view and the 2 links you gave.

A

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

To skiingfiend:

So what do I know about skiing anyway?...... To this day I still think snow plows are for piling up snow banks............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/23/2023 10:04 PM EST

[j-o-h-n]

BTW NLondon....... how old is your dear Husband (for his bio)...Thanks

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/24/2023 5:46 PM EST

[NLondon43 in reply to j-o-h-n]

Hi j-o-h-n

He’s 63 - 62 when he was diagnosed only 14 months ago but it feels like we’ve been living with Pca for 14 years!

A

[j-o-h-n in reply to NLondon43]

Thank you A...... I know the 14 years feeling. I'm been fighting the monster since I was 66 and I'm now 87. It's not a pleasant ride but can be accomplished with all the old and new meds in the hopper. Live and fight on...... and try to laugh Regards!!!

p.s. You may want to add his age to his bio...(can be relevant sometimes).

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/25/2023 6:16 PM EST