Chemo "reset?"?: Hello all, I... - Advanced Prostate...

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Chemo "reset?"?

GSDF profile image
GSDF
49 Replies

Hello all,

I believe I saw it here a while back where it was stated that after castrate resistance has been reached and then moving onto taxotere (chemo), that in some cases the chemo somehow causes some sort of a "reset" to where drugs like Orgovyx, Xtandi, Zytiga, etc., begin to work again..

Is this factual , even in sporadic cases? Does any one know or have experienced such a thing?

Thanks in advance!

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GSDF
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49 Replies
EdBacon profile image
EdBacon

It's certainly been shown that alternating chemotherapy with anti-androgens is superior to just switching between them. Chemotherapy can kill off some of the cancer with androgen receptor mutations because they are not resistant to chemotherapy. Here's a clinical trial that tested this hypothesis:

nejm.org/doi/full/10.1056/N...

I just came off Xtandi and seemed like the cancer was really taking off. First cycle on Cabazitaxel and judging by my pain disappearing within days of starting, I'd say it's working. I could barely walk when I started.

Chemotherapy for prostate cancer is one of the most underused treatments. Sad because it works.

dhccpa profile image
dhccpa in reply to EdBacon

How are chemo side effects? Have you done both docetaxel and Jevtana?

EdBacon profile image
EdBacon in reply to dhccpa

I've done both.

The side effects of Docetaxel are quite tolerable for most. I felt sick for the first week, like I had the flu. But not a really bad flu. I've certainly had flu viruses that are worse. So I could say with certainty that you've likely been through worse already just with the colds and flu viruses we get in normal life. After week 1, I started back to normal and the 3rd week was completely back to normal. I had some diarrhea and a bit of nausea, but never threw up. Didn't even need meds for it. Had lots of tearing in the eyes and a bit of edema in the ankles and lower legs. It's not what I would call fun, but neither is getting colds and flu, but we put up with them. if it works, it's well worth it.

I'm now on my first cycle ofJevtana. Have to say it is significantly easier than Docetaxel. The side effects are about 1/2 of Docetaxel and it's just as effective. Less diarrahea, no nausea. Wiped out my disabling pain in a matter of days.

dhccpa profile image
dhccpa in reply to EdBacon

Interesting. But docetaxel has to be done first?

EdBacon profile image
EdBacon in reply to dhccpa

In general, yes, Docetaxel does have to be done first, mainly because of cost. It was shown in the FIRSTANA trial that Jevtana is no better in the first-line setting and it's quite a bit more expensive. Doctaxel can also be effective. At a much lower cost, that's usually tried first.

dhccpa profile image
dhccpa in reply to EdBacon

OK thanks

tayninhtom profile image
tayninhtom in reply to EdBacon

Cannibis use while on chemo will offset pain, not make you "high" but keep the pain level muted to the point that one can live a normal life. Unlike addictive drugs that are opium based , one can stop cannibis use without any withdrawal symptoms. I speak from experience of 6 months of taxetere in 1915. Try it, you'll like it.

EdBacon profile image
EdBacon in reply to tayninhtom

Thanks. I do have some and have been rotating it along with Opioids and over-the-counter meds when I can. I've talked about it in some comments in the forum. I'm using a strain called Platinum Cookies, a good indica strain that doesn't get me high, just reduces pain. When I rotate the meds around, I try to aim the cannabis for the night time med because it also helpds with sleep.

Since a few days after starting my Jevtana chemotherapy treatment, I haven't needed any pain meds. I'm hoping this continues, at least for a while.

tayninhtom profile image
tayninhtom in reply to EdBacon

That sounds perfect. Indiga for night time. Sativa for morning

spw1 profile image
spw1

I read somewhere that chemo resensitises PCa to hormonal drugs in circa 50% cases. Not sure where I read that as I normally keep notes but did not on this occasion as the Docetaxel has not shown much effect on my husband so far. I was not sure if this would matter to us as NHS also gives Zytiga or Xtandi once and only one of them. They cannot go back to them even if they might work. If we were to buy Zytiga from India, say, they will not supervise the blood works as they have not prescribed the medicine.

Seasid profile image
Seasid in reply to spw1

When will start to be available in UK the generic Abiraterone?

I believe it should be available in Australia this year (2022). I read this information on some cancer research site.

I am praying to God that this will be true as it would make our lives much more easy. The outdated byrocracy which prevents switching from Enza - chemotherapy - Abi would be past.

spw1 profile image
spw1 in reply to Seasid

Keeping fingers crossed.

dhccpa profile image
dhccpa in reply to spw1

You can't redo even if it helps? You must move on the next phase treatment?

spw1 profile image
spw1 in reply to dhccpa

yes

EdBacon profile image
EdBacon in reply to spw1

Can you get second-line Jevtana chemotherapy? It often works when Docetaxel fails. Plus it is easier to tolerate for many. I'm finding it much easier than Docetaxel so far.

spw1 profile image
spw1 in reply to EdBacon

We are trying to do that. For the 4th infusion, the MO would not allow the change as he had not seen my husband in the clinic to sign a consent form. He had not seen us because he gave us a tel appointment and persuaded my hubby to go for Docetaxel number 4. Strange things they do. With a PSA now of 414, I think that it was a risky decision as Docetaxel has never brought PSA down. MO says PSA is not everything but the bone scan he ordered is only to be done tomorrow; report will come in at some stage hopefully before the next chemo session. Going by symptoms of feeling tenderness in hubby's hips and a new sore spot on iliac crest on the back, there may be some activity going on despite Docetaxel infusions.

EdBacon profile image
EdBacon in reply to spw1

It does make sense to do imaging vs relying on just the PSA. Some cancers make more and some less of PSA so imaging is important before determining if there has been progression.

Another useful indication for bone mets is the Alkaline Phosphatase. It's an indication of bone turn over and typically goes up with progression of bone mets. It does have other sources in the body, but it's a still fairly good indicator in the blood tests that are normally done.

When my PSMA PET scan was basically clear, my Alkaline Phosphatase was in range at around 105. When my mets increased along with pain and mets showed up on the next PSMA PET, my Alkaline Phosphatase went up to 160 (out of range). After my first cycle. they will do my blood tests, although not PSA because of potential false positive with dying cancer cells. But the Alkaline Phosphatase will be taken so I'll be watching that to see what happens.

spw1 profile image
spw1 in reply to EdBacon

My husband's ALP does not show correlation with the PSA but LDH does and his LDH rose from 342 to 1250 as PSA went from 99 to 414 since starting chemo. I think LDH is a useful marker for him. When ALP is low for my husband it can be as low as 58 but at the moment it is around 100.

Seasid profile image
Seasid in reply to spw1

It sounds like a nightmare. I am wondering if it is happening just for you or is it endemic?

I personally don't underestimate the UK healthcare system. I believe that the Australians copied it at least partially.

In Australia I believe that I am as a migrant treated differently than a reach member of the community. Maybe it is only so in my hospital? I am planning to move to Melbourne to PeterMac cancer center.

Maybe you could also come to Melbourne? Your health insurance is recognized here in Australia but I don't know the extend of it. I know that our countries have some bilateral agreement but I don't know the details. Maybe you can contact PeterMac cc and find out if you could be treated there?

spw1 profile image
spw1 in reply to Seasid

My husband has an Aussie passport (mum was from Adelaide) but I doubt that he can just access the care system there. They are better than the NHS I think. My father in law had cancer treatment there in the 1990s and was treated v well and promptly. He came to the UK where they simply neglected him.

Seasid profile image
Seasid in reply to spw1

Could you maybe contact PeterMac cc in Melbourne and find out the details? They should hopefully know if you could and how move there. I understand that it is maybe not so simple but you are capable. Maybe Australia (Melbourne) would be better for you? PeterMac is the 20th best cancer center in the world. Just ask them:

petermac.org/location/melbo...

spw1 profile image
spw1 in reply to Seasid

Thank you. We will look at this option too.

Seasid profile image
Seasid in reply to spw1

Much better than India.

Seasid profile image
Seasid in reply to spw1

I just received a latest news: a new generic zytiga becomes available at the end of september in Australia subsided for a $1000 a month

spw1 profile image
spw1 in reply to Seasid

Interesting, we asked our MO if we could try it post chemo (sometimes body re-sensitises to hormonal treatment) and they said that if we bought the generic they could not supervise the bloods. They would not prescribe it themselves as it is not part of SOC!

Seasid profile image
Seasid in reply to spw1

it will be available at the and of September in Australia. That is the information what I have now. Hopefully we will know more soon. I asked the pharmacist but they still don't have it as it will be available end of the month.

Seasid profile image
Seasid in reply to spw1

Study Evaluating mCRPC Treatment Using PSMA [Lu-177]-PNT2002 Therapy After Second-line Hormonal Treatment (SPLASH) ok

Locations in United Kingdom for the clinical trial with Lutetium:

Charing Cross Hospital, Department of Medical Oncology Recruiting

London, United Kingdom

Royal Marsden NHS Foundation Trust - Institute of Cancer Research Recruiting

Sutton, United Kingdom

clinicaltrials.gov/ct2/show...

spw1 profile image
spw1 in reply to Seasid

thank you. this is very helpful.

spw1 profile image
spw1 in reply to Seasid

I remember asking at the Marsden and they said that Lu177 trials are all looking at giving it much earlier than at my husband's stage. They did not think he would qualify.

Seasid profile image
Seasid in reply to spw1

see this post:

healthunlocked.com/advanced...

Seasid profile image
Seasid in reply to Seasid

you may want to ask questions from Tango65. He had this infusion in Germany (only one) six years ago.

spw1 profile image
spw1 in reply to Seasid

Thanks

Seasid profile image
Seasid in reply to spw1

i believe it is very good that he is finally getting cabazitaxel. Maybe even better than Lutetium et this stage az it can make that enza or abi will work again. Maybe there is a clinical trial (like PROPEL) where he can get Olaparib plus Abi etc

spw1 profile image
spw1 in reply to Seasid

Keeping fingers crossed. Thank you.

Seasid profile image
Seasid in reply to spw1

you will not qualify as you had a chemotherapy. Maybe you could get it in Germany. Ask Tango65. (You can send him a private message)

Seasid profile image
Seasid in reply to spw1

go through all inclusion and exclusion criteria and call the chief investigator. Maybe they can make an exemption for you if you need it.

spw1 profile image
spw1 in reply to Seasid

Okay. Worth a try. Thank you.

Seasid profile image
Seasid in reply to Seasid

petermac.org/location/melbo...

MyDad76 profile image
MyDad76 in reply to Seasid

Patent in Europe on Zytiga exired today. Well at least in Slovenia, I think it should be true for other European countries as well. So as of today generic Zytiga is available in Europe.

Seasid profile image
Seasid in reply to MyDad76

Maybe I can move to Europe now. How much will it cost in Slovenia? I was in Dobrna with my grandmother as a child. Dobrna was very green.

MyDad76 profile image
MyDad76 in reply to Seasid

Yes, the whole country is very green, but as far as health system goes it is un utter disaster and hard to comprehend even for us, let alone for someone coming from abroad. Price for 30 tablets of 1.000mg is 1.867 euro (price is regulated).

Seasid profile image
Seasid in reply to MyDad76

WOW, thanks. Still lot of money. Much more than I hoped for. My mother was born in Ljubljana but they returned to Novi Sad whem she was only 3 years old.

MyDad76 profile image
MyDad76 in reply to Seasid

Ah, so you have routs from former Yugoslavia :-) I still can't get my head around, how it ended, how many suffering and victims.. We do not pay for meds out of the pocket - we have state health only, so once you get it prescribed, it is free of charge. By free I mean we pay from taxes (we have so called health contribution - percentage of salary, it is actually high, but as only employed pay all the cost for health system and everyone is covered, health system is severely underfunded). Since in state health everything is "free", there is never enough money for everything so in general service is very poor, and miles away from any decent developed country. For prostate cancer that for example means that if you are over 75 they just tell you, stop panicking, you will not die of it. They do not even care to check if you have aggressive disease or not - so my dad, who had completely curative disease now has mets, since they did not do neither radiation, neither surgery just put him on the cheapest hormone treatment there is. Surprise surprise, now at 80 (6 years after being diagnosed) hell broke loose. Do they give a shit? Of course not, there is no responsibility in our system, waiting times are ridiculous. An since we do not have a single private hospital, well good luck. You either know someone or are doomed. Balkans, as we say it :-)

Seasid profile image
Seasid in reply to MyDad76

Well, my mother was treated purely until she was referred to the military hospital in Belgrade. They had better doctors. My mother was a healthcare worker.

Well, even here depends everything who you are. If you don't have money to pay doctors you are relaying on the public system. They asked me to pay 5000 A$ for a liquid biopsy but I did find out through this site that at this stage it would be useless. The young doctors are still learning on my expens.

Just don't think that we all here have a better healthcare system than you in Slovenia. If you live in a regional town your life expectancy is the same as in north Korea or Afganistan. It is 68 years. If I want a good healthcare I should move to Melbourne and become a patient of PeterMac.

MyDad76 profile image
MyDad76 in reply to Seasid

I honestly prefer to have an option (pay private insurance) than to rely on state health. We do not have the option of private insurance - just some mionor stuff is available in private health sector (simple things), for all the rest we have state only. Each month I need to pay 600 eur for health tax, the treatment we get is ridiculous. Can I go privately? No, since there is no private clinic at all.

I believe the best system is probably the combination of public and private health insurance, if I need to choose between the 2 extremes I choose private without a doubt.

I do hope you get proper treatment!

Seasid profile image
Seasid in reply to MyDad76

It is not easy anywhere to be sick. I belive you have an European health care card. You probably could go to Munich? You are not so far away.

When a Slovenian comes to Australia they can apply for an Australian medicare card. I belive that our countries have a reciprocating agreement about health care. Therefore your healthcare system is good.

MyDad76 profile image
MyDad76 in reply to Seasid

Well I've been to other EU countries so I can compare directly and this is why I'm of the opinion, that our system is catastrophic. It theory everything looks grate on paper, but than reality strucks you. Reality means, that waiting times for first appointment with rheumatologist anywhere in the country is 1 year plus, and you can't go private, as there is no private practice. Same goes for cardiologist, orthopedists etc, just that waiting time is 9 months and there is some private out patient offer. 130k people (out of 2 million nation) are without GP, as there are not enough of them. And no, no private GPs available. You are unsatisfied with your GP? Best of luck, there are none to switch to.

Anyway, it is, what it is.

Seasid profile image
Seasid in reply to MyDad76

believe me I could saybć the same. I hsve to wait 6 months to see an ENT specialists in a public system.

I know one young girl from Taiwan who needed an appointment with an ENT specialists and it was easier and quicker for her to organize the appointment in Taiwan and to fly home and then to return to Australia than to see a specialist here.

Seasid profile image
Seasid in reply to MyDad76

i am from Sombor, but my mother was from Novi Sad.

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