My journey with Abiraterone looks like it has come to an end. Last week I was informed after 10 months on Aberaterone, that it is not as effective as hoped and that I would most likely benefit from a change in treatment. My PSA has gone from 68 down to 24 in that time with bone mets reduced but there is still activity. I have been offered an immunotherapy phase 1A trial at the Royal Marsden (London), which sounds interesting but obviously holds no promises. I still have Chemo, Radiotherapy and other options in reserve, but the specialist are very keen at this stage to see how I respond to the trial. The trial would include weekly checks, a drug taken orally and an IV drug taken once a month.
Would be interested to hear experiences of clinical trials, up and downs etc.
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easeytiger
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Royal Marsden (I know of Drs de Bono, Parker, Eeles and Attard by reputation) is certainly at the forefront of clinical trials, so I would take seriously whatever they recommend. Which immunotherapy trial are they recommending (there are many)? For how long will it hold up other therapies?
I've met with prof Dr Bono a few times, there are around 40 ongoing trials at RM but he has suggested this would be a worthy trial for me. It's called icecap, the intent to block the p13k pathway using ipatasertib and atezolizumab.
It sounds good, especially if your genomic tumor profile shows evidence of PTEN loss (as most prostate cancers do), How long are you in the trial - until signs of progression?
From what I have read about clinical trials, esp. stage I, they are last resort. So, if you still have viable treatment options, and you do, you should pursue them. If you can continue with standard of care treatment, and you can -- do not sacrifice that for an experiment on a mere hypothesis, which is all that stage I clinical trials are. (Perhaps Xtandi -- my husband did the reverse -- Xtandi then Abiraterone, and uber-oncologist warned that it had a low likelihood of working, but it's working!)
I'm really surprised that docs are pushing you towards a clinical 1 trial instead of treatment that is known to work. Check to see if you can pursue standard of care treatment along with the trial, and maybe that's OK because you will still be getting treatment.
Thats what I did in Jan Good luck. The zytiga lowered by psa from 11,000 to .2 less than 1. Radiation to t3 shrunk 2 tumors upon bone scan. Feeling much better. Alkaline phosphatase went from high to normal. Thank God and miracle medicine. Good luck. Get a good mindset. Its easy to give up. Don’t!
I suppose it depends how much activity there is. Because, if it is likely that the cancer is growing fast, then I wouldn't spend time with trials and do Chemo and/or radiation. If the cancer is growing slowly, then perhaps you would benefit from the trial, but of course there is always uncertainty with trials...
I am currently on my second clinical trial with xtandi. Here in the US I have found the only down side are the CAT scans and bone scans which I have to endure every few months. I have tolerated the Aboraterone and the xtandi in these trials.
In the area of immunotherapy I have had Provenge for nodes in my lungs. It worked quite well, all nodes were reduced and stabilized. The worst thing about Provenge is the tube sticking out of my chest for six weeks.
I am fully in favour of everyone getting on drug trials. At the least, our sacrifices will lead to a cure or making this dreadful enemy a common cold. Keep us informed if you do decide to embark on it, so we can add it to our list to watch and recommend.
I tell everyone that a major problem in the research area is a lack and long delay in getting sufficient men for them to start and complete a trials, so they need us boys!!!
Whats the name of the trial as I have an appointment at Christies in Manchester this week after enzalutamide has failed. In UK apparently abiraterone isnt an option after Enz.
I am on cabazitaxel at the moment but psa is still 32 so clinical trials would seem my only hope now.
Sounds like you may need to understand the rationale behind diving into this trial so early. If Abiraterone is failing and you must switch, you need to be convinced that this is the right move for your specific PCa status, given the potential alternatives. Please let us know how you get on at the Royal Marsden. As my Abiraterone is starting to fail, I think I may be down there in the not too distant.....
Marsden Hospital's success is a bit patchy with immuno therapy, but are they trialing it?
Might cost you nothing, and maybe you are in small group where some Pca patients got remission.
From what little I know, immuno therapy maybe works best where a man has high white cell count so maybe its best before chemo which reduces WCC hugely, leaving little for the IT to work with. IT offers the chance for your immune system to keep on killing Pca cells long after initial treatments of HT, which really don't kill all Pca cells, but puts them to sleep so the Psa reduces, but Pca very much a remaining threat.
I am having Docetaxel now, and my immune system is nearly caput, and this chemo will begin to fail, and when it does, there is no point continuing without the activity of "getting my affairs in order".
Cabazitaxel may / may not be any better than Docetaxel. I am thinking Lu177 or Ra223 would be better.
Its all about giving yourself more time alive. Getting remission is so rare for Pca that a man is a fool to expect it to happen.
How do you mean RM trials are a bit patchy? Trials are trials! The only way to move some Pc from being a death sentence to something that we can live with is through trials. HIV was never cured, drug combinations made living with it possible. I know chemo and other treatments are still available to me, LU177 not available in the UK and is prohibitively expensive. I don't expect remission but approach success and failure the same way.
How many sessions of Doxatel are you doing? I am assuming it is a rechallenge. My husband just finished his third doxatel dose in a rechallenge. He is doing pretty good. His PSA is stable. Please share any details you are comfortable with.
Hi Steph, this is my first course of Docetaxel, and there's nothing nice about it.
I had the 3rd infusion last Thursday, and felt so good on that day I cycled to and from hospital 19km away. But day 1 after it rained, so I huddled at PC all day, but OK
Day 2 after I cycled 20km, including a visit to a museum to have a cup of tea and a cake after having lunch at another cafe. Day 3 after was kinda dreadful, I felt like I'd been poisoned, and lethargic. Day 4 yesterday was the same, but I spent a couple of hours in shed analysing some electronic circuit. Today I cycled to lunch, only 6km, and although my stomach had aches and grumbles, I rapidly came good in afternoon and felt just fine by 3pm, and I spent 5 hours re-wiring the electronics.
So maybe I'll feel better tomorrow and cycle further, and get more done in my shed.
It seems that as I progess with this treatment I am learning to get used to it, and not do too much, but do enough, and I refuse to sit around and mope.
I am coping very well without any relatives or partner or kids around. I was never a huge success with the dear ladies who did spend some time with me rather than none. a people.
If I am getting more able to tolerate this treatment then its possible my cancer is taking less notice of the Docetaxel. I really have no idea whether the cancer develops the ability to withstand repeated attacks with Docet, or whether the good part of my body is learning to obstruct the drug, to prevent it making me feel bad, so maybe help the cancer to avoid it. I do not have a very communicative relationship with each and every cell in my body, or with the cancer cells; Its not as if you can say to your cancer cells, "Oi, youse a gotta die, OK, and let me live, OK, youse got that?" Nah, no such luck.
I did not have RP, but had ADT and RT instead, and Pca had probably spread to bones 10 years ago, but ADT kept all the countless mets so small they did not show up in scans until 2016. So, it can be said that my prostate gland can be given the name of "Puff the Magic Prostate Grenade", and it is now slowly exploding, and looks pretty laid back, confident, and defying most doctors, and its thinking "I'm a gonna get ya, mark my words old fella, I really am." and all I can do is say "well yeah, I can see that talkin to you is pointless, because youse is an arsole". The cancer smiles when I say things to it.
Meanwhile, I find wonderment in being alive each day and I am busy, occupied, and spend enough time talking to ppl I know, and typing to you, and others.
I try to be brief when friends ask me how I am, because its boring to explain the Pca and treatment yet again, so I just concentrate on the details of my friends' human existance, and I am lucky that they find my perceptions are worth the listen. I quite like typing to ppl around the world; and on this subject of Docetaxel I vcan say that its bearable, and sure, first 5 days after a shot of Doc are torrid, but things then get better.
When I began chemo, Psa was 12. It shot up to 36 after first chemo, then came down to 26, and has since move to 27, and I have no idea if it went daown to say 12 between 26 and 27 and is in fact going up fast. This will become known in 2 weeks when its just before 4th infusion. I agree with docs to give chemo a go because the only other thing was Lu177, and if the Psa is going up fast and indicates its just not working, then I'll either buy a course of treatments with Lu177, or maybe take part in a trial here for either Cabazitaxel OR Lu177. Maybe if the Cabazitaxel also fails to work, they may switch me to LU177.
I could have 10 Docet doses, that's about the normal max, but a friend said he knows fellow who had 40 shots of Docet. The friend had had 7 shots of Lu177, he was diagnosed 20 years ago, Gleason 9, inoperable, like me, and he is quite able to talk about his experience in good detail, so he's alive and well. He says he eats frozen slices of pinapple to deal with his dry mouth.
The LU177 or Cabazitaxel trial is free, but if Ibuy the Lu177 its $40,000 for 4 infusions. Then there is Radium 223, good for bone mets and that costs $68,000 for 6 infusions.
When a man gets old, he must learn to spend some of his pile he saved on his health, ie, to extend life because he enjoys it. But if you don't have any money, there are only trials, and maybe the docs find reasons to exclude a man from trials, so that's when life is a bitch for sure.
While on Docet, having a stable Psa that is not rising, but not falling is a very poor outcome because as soon as a man quits the chemo, the Psa is likely to zoom up, ie, the cancer has nothing to stop it growing, so it progresses.
But I only know about a small number of cases, and the case history of any man will be different to threnext man along, even though they may have begun a treatment that is the same, and with similar Psa and cancer spread.
Cancer forces us to consider our mortality, and question the reasons for existance, and I have evolved a few simple philosophies and it helps me cope. I don't have the time here to explain how I see things philosophically, but I want to feel OK about dying when the time comes. Most here want to chat to others so a problem has less negative impact if it is shared. Some just want a cure, and want it now, and they search for one, but remissions from Pca are quite rare, as is the case with Bca, Oa , and countless other cancers.
Keep well as you can Steph, you need to let love find a way through this troubling time. Patrick Turner.
My husband was in an Xtandi trial. It was phase 2. He thinks he got the placebo but we won’t ever know. You still have many standard of care options available. If you were my loved one, I push to have you would stay with standard with care right now and trials later.
My dad was good friends with his doctor who convinced him to do a trial. He ended up 6 months later sicker than a dog and disease progression. If you want to gamble with your life then take a chance. The people I know who did trials were pretty much at the end of their rope and were willing to take chances.
I find it a bit weird too tbh, because it's like gambling in a way and it's risky.
I mean you still have so many options and it's all stuff that will work for sure: Radiotherapy, Xtandi, Provenge, Docetaxel, Cabazitaxel, Carboplatin, Radium223, you also have the possibility to try again Zytiga and Xtandi after chemo and there's a chance they might work again. There's also BAT, might not work but for many it does.
I believe the goal with this disease is to live as long as possible until new drugs will appear and so turn it into something chronic rather than deadly. Ultimately the choice is yours of course but usually clinical trials are the last resort to take when you exhausted everything else.
Why roll the dice when you're dealt a hand like this?
Surgery might get all the cancer out if its very soon after it begins. If it never comes back after surgery, Lady Luck has indeed smiled. But maybe 40% find that surgery does not get it all so you then move to "have a chronic disease" for which there is no cure, and a huge expense of successive treatments.
If Docetaxel does not work for me, I have a chance to move to Cabazitaxel, and my doc says he gets more results with this than Docet.
But there's a trial of Cabazitaxel OR LU177 going on now, and its free, and if I had Cabazi and it did not work, I get chance to move to Lu177. If I am given Lu177, and that does not work I'd change to Cabazi, so that I'd be getting whatever benefit if there is one from at least one of the 2 things being compared in the trial. So in this case, I don't end up having a placebo instead of the drug being trialed. But with chemo trials vs Lu177 vs placebo, It becomes 100% obvious what you are getting because you'd feel well with placebo but Psa rises, and chemo has obvious sife effects and Lu177 not so many side effects, but method of getting the dose is different to chemo; there are scans, the frequency of Lu177 is longer than chemo, so anyone in this trial I am considering will definitely know what they are getting, and maybe enjoy seeing their Psa going lower. The idea of a placebo is basically a very harsh method of trialing. Who on earth is going to settle for a placebo while their Psa goes to tragic levels? Most blokes want to move from one treatment to another asap because they know to do nothing is suicidle.
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