Hi everyone. This is my first post having been a complete bystander since joining almost 2 yrs ago. First of all I just want to say what an incredible community and source of inspiration this site has been to myself and my partner- even when feeling at your weakest you are the strongest people I have ever encountered. I have put as much info as I can in the profile but if I’ve missed anything please say and I’ll get that info on ASAP.
So, as you can see from the profile things really aren’t going as hoped. My partner’s Oncologist wanted to stop chemo after 3 cycles as his PSA is shooting up, but he has requested we continue as his bones are showing some improvement and he is tolerating the treatment well. The Oncologist has said there are no other treatments available if the chemo fails, which essentially it is when looking at the PSA increase. I asked about other treatments such as radium 223, Olaparib, and everything else on the NCCN list but it was a no to everything. I honestly can’t remember the specifics of that conversation as I think my brain melted after hearing the words ‘there’s nothing else’. I’m going to contact our Royal Marsden Hospital regarding their recent commencement of Lu-177 to see if they can possibly help. Any thoughts from you guys? Do we still have hope, if we ask the right questions and push in the right direction?
Many thanks, with love 💖🌸
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Purple-Poppy
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You can rule out Olaparib if genetic tests show there are no BRCA mutations. So if the tests have not been done, the oncologist cannot decide that this treatment will not work. While you get this test done you can also check for MSI-H mutations. These tests can and will be done at Royal Marsden.
You can also get a Lu177 therapy but this is very expensive if the NHS does not pay for that. It can be done at Oxford: genesiscare.com/uk/treatmen...
You can also get a Radium 223 therapy, but this takes about six months to complete. This is a long time if the PSA value is at 550 ng/ml.
Thankyou GP24. I’ve sent a contact form off to Royal Marsden to see what they say. In the meantime I guess I need to start planning some fundraising! Thanks for the link to Genesis Care. Very grateful for the info.
If you own a house you may find you can reverse mortgage your house to get the $$$$ needed but this gets taken out of your estate when you die, plus bank costs. This all sounds horrid to any 45 year old, but hey, you can't take the house with you when you die.
BTW, Genesis Care administers Theranostics Australia and they have branches in Perth and Brisbane. Meetings with docs at TA are done using Zoom, and you need PsMa scans which you'd get in USA, Men used to go to Germany for Lu177 but Covid 19 has made it difficult. At my first Ra 223 dose I met two men from Japan. They did not speak English. A nurse there said they get men from around Pacific, Noumea and they arrange an interpreter if needed, and may well arrange a hotel stay if needed. Travel to and from USA to Australia is not cheap, but in 2019 I met 3 men from USA, so they had the money, and wanted the extra time to stay alive. I do not know how they fared.
There is also Provenge, a method which is in USA and works on your white cells to make them attack Pca, but mean extra survival time is only 4 months and it costs usd $150,000. Think about asking to be in trials. But trouble is that you may get into a trial for one thing or the other and this is chosen randomly, and if what you are assigned does not work you cannot be transferred to the other treatment in trial. I could have been in trial for Cabazataxel OR Lu177, but because Docetaxel failed so badly, I had no faith in Cabazataxel, and I was not willing to waste the time if I'd been given Cabazataxel.
If Psa begins to rise fast then no man can afford to wait, or try something very unlikely to work, he must go to best chance option, if its available, and scans show its likely to work.
Thankyou Magnus1964. I think this is one of the things I asked the Oncologist about but I will ask again just incase. We are due a call from him again on 15th March - I’m compiling a long list of questions as we speak!
(3) I hope he is accepted into the clinical trial at Royal Marsden. Johann de Bono there is lead investigator on a number of important clinical trials. Maybe try to get a second opinion from him.
Thankyou Tall_Allen. I’ve noted all the above. I was previously feeling quite hopeless and helpless, but I’m beginning to turn that around now and this corner I felt backed into, well, I think I can come out fighting again. It’s been a mentally tough few weeks. Thankyou so much.
As TA mentioned, either a NHS or private referral to Professor Johann s. de Bono might very well result in some new options. This might help in making such a connection.
If you can afford it go out of country to get some second opions.
Lu177 treatment is available in germany and Australia. Get an opinion on that maybe.
Lu177 treatment in Australia is reasonably priced. It is even cheaper in India.
Bipolar Androgen therapy might work. You can get that in the US, from docs that have participated in the Denemead trials. Try Sartor at Tulane university.
If you can find a doc in the UK, Sartor might be willing to supervise treatment with an annual face to face.
You would start that by scheduling an appointment with him for a second opinion.
He is likely to provide you with multiple alternatives.
Thankyou cesces. Sadly we don’t have a lot in the bank to cover such things, but I’m a never say never kind of girl. I lost my dad to bowel cancer 16 yrs ago but did a lot of fundraising while he was still with us. I’ll just dust down the old oars and get some sponsored rows in! Better weather is coming so I’ll get back up to the Lake District and get back in a boat, and see what I can do. I certainly feel encouraged by the options and suggestions you guys have given us. Thankyou so much.
"Theres nothing else" I would hear,be devastated, then fight mode would set in. I felt a positive spirit reading your words and now armed with the advice and wisdom of those on this forum you are ready to go into battle with new weapons. My husband was seconds away from "there's nothing else" until a somatic biopsy showed in fact there was something else Keytruda because of a Msh2 mutation. I pray you both find a something else too
Hi Vindog29. That’s exactly how I feel....armed and ready! I’m channelling my inner warrior - I had my DNA tested last year and discovered Anglo-Saxon and Celtic ethnicities so I’ll be bringing those genes out to the fore! Now bring me my swords and Druids!! Thankyou for your encouragement. 🌸
If the more well established options above do not work for long, then I would suggest you consult with Genesis Care about doing Veyonda (idronoxil) with low dose radiation to one metastasis “per protocol “ for the DARRT-1 trial. Genesis Care has the connections in Australia to get this drug on a compassionate basis at low to no cost perhaps. Then one met is zapped with focal RT (S BRT) to activate a response throughout the body against the prostate cancer.
Thankyou MateoBeach. This looks really interesting and definitely worth further investigation. I see Genesis Care getting another mention - GP24, who responded to me yesterday, also suggested them. They’re clearly doing some really important work around treatments and it confirms that ‘no other options’ is not actually an option!
I was on my death bed getting blood to stay alive. Zytiga-prednisone cocktail brought my psa from 800 down to undetectable, took 1 1/2 years. My cancer had spread everywhere, lymph nodes, organs and bones. Maybe this would work for for you.
Wow Lincolnj8! That’s amazing! That sounds relatively simple and very effective! I am so happy for you that you got such a great response. Thankyou so much for sharing your experience and the positivity that came with it.
I hope you don't mind a few wild ideas about it. I use these myself and the expense is nearly zero, so it may be worth a try. I have success with Lupron/Eligard/Orgavyx a with Xtandi which lowered my PSA from 35 to near zero recently.
First is heat. The thing is that regular sauna use at over 110 for prolonged periods may help. All cancer cells die at 106 degrees F. Problem is it takes awhile for heat to get into the deeper parts of the body, like bones and organs. I have little experience in that. May be worth a try especially on extremities.
Second is lycopenes. They are essentially tomato products cooked and with oil such as catsup, tomato paste, and similar items. They supposedly keep the prostate cells from growing and possibly kill the cells. Need frequent intake.
Third is magnetism. I don't know about higher PSAs but there seems to me to be effectiveness at lower PSAs.. I would be happy to explain more deeply if you wish
I’m all for wild ideas NecessarilySo! Seems nothing is really wild right now, rather more another option or weapon in the armoury. Tell me more about magnets?!
Well I have a few bone mets that are not terribly painful but one on skull and one on spine and one on rib. I applied magnets in addition to the Lupron and Xtandi and they seem to have diminished but they are probably smaller than your partners. Not sure. But the way I used magnets is I bought about ten refrigerator magnets and hung them on a string on the doorway to find which side faces north. South faces north. South poles of magnets face north. Label them with ink on tape so you keep south clear. Place the magnets with south face against the tumors and leave them there for two or three days. In my case the pain goes away. Some people say it's the extra oxygenation, others say it is the alignment of the blood cells that allows better circulation and thus better oxygen. I really don't know but it seemed to work for me. Have to spend about $20 for magnets and a few dollars for some waterproof tape like adhesive tape. I can only say that it works on small tumors. I don't know your partner's conditions but it may be much more extensive than my own and therefore I can't say it will work. Another idea is to apply one magnet to one location and wear for an extensive period so it works on the blood and kills cancer cells throughout the body. I can't be sure but I have not done this.
I love stuff like this! Don’t get me wrong, I would never throw away the hospital treatments and replace with anything classed as alternative. But, I absolutely will, and do, cleanse the crystals while he’s hooked up to a chemo drip! I’m off to the kitchen to count the fridge magnets....let the experiment begin! I’ll keep you posted 💪🏻👍🏽
I made a magnet ring for someone with mm and it lowered the m-spike but she died anyway a few months ago. More like her drug alternatives ran out. The m-spike went down for two months wearing the ring all the time.
Interesting post about the use of magnets! Reminds me of when I had hurt my back somehow and could not get out of bed that weekend and tried to heal. I forced myself to go to work on Monday and a co-worker noticed my discomfort and that I was in pain. He was an avid goffer and offered to loan me his back shield magnet which he said he used all the time when he pulled a muscle in his back. It's similar to this item:amazon.com/Promagnet-Magnet...
Well, it was not my imagination that the pain was greatly reduced the first day using the magnet and in three days was totally gone and I returned the magnet device. There are some products that can go on your bed that might fit the bill on Amazon: amazon.com/ProMagnet/b/ref=...
From that "new age" experience a few years later I took another leap of faith and purchased a Biomat for myself. It worked so well that I purchased the Biomat pillow to go with it for a combined tidy cost. I have been using it for many years now every night without fail. Mine is also temperature controlled thermostat which is quite interesting how it interacts with your body heat. At times it is taking excess heat away from your body and at other times it is radiates the heat deep into your bones. That's why I was attracted to it with my PCa five bone mets. It feels darn good on my back. Plenty of products now to choose from:amazon.com/s?k=biomat+infra...
That really is interesting, and the more we talk about magnets the more I realise I know people who have used magnetic aids for therapeutic reasons. I’ll have a look at that Amazon link - Thankyou so much for sharing.
Wow I’m sitting here listening to leaving on a jet plane and I read your post and I teared up damn life isn’t fair. I too have meet such amazing people
I hope the people in here have some info for you and I wish you and your partner nothing nothing but peace and happiness
Here’s the strange thing Collarpurple, I have BBC Radio 2 on and they’re playing Shania Twain’s ‘You’re Still the One’. I think I might have a mini breakdown for a few mins! I already knew all the words because it used to get played to death, but oh my days they seem to kind of fit right now! Phew...it’s finished. I’m Sitting on the Dock o’ the Bay now!! 😙🎶
Please take to heart that love is a reason for him to endure this . Compassion and love save the day . Everyday . A lot of us here have been in dire straits with APC and have had doctors bad predictions . “ there is nothing else”...I don’t believe it . I was told that i had a 50% chance to survive my initial treatments . I thought to myself , better than 90% - 10% .. Those loving and caring for someone with cancer are saints in my book . Thank God that he has you .
I was diagnosed 2009, age 62, Gleason 9, Psa only 6, inoperable, no spread found, but could have been many very small mets I may be dealing with now
I began ADT 2010, still on it, had extra R T to PG when ADT failed 2016, had Cosadex, it suppressed Psa for 6 months, then Zytiga did that for 8 months and after 4 doses Docetaxel in late 2018 Psa was 46, 4 times more than when I begun chemo and successive PsMa Ga68 scans shows met increase all over in visceral lymph nodes and bones.
I stopped chemo after 5 doses, Psa went down to 25 in one month for no known reason. I had 6 doses Lu177 In Sydney near where I live in Australia and over next 18 months, Psa went to 7 then went up to 170+. But no soft tissue mets have shown up in scans and I seem to now only have Pca in bones which qualified me to try to have 6 doses of Ra223, ( Xofigo ) and it may well zap all bone mets which Lu177 could not kill.
I had first dose Ra223 10 days ago, so its too early to know if its working via blood tests.
So the only thing that was able to really kill my Pca cells has been nuclear medicine.
Lu177 targets all Pca cells making enough PsMa and gives beta particles.
Ra223 targets Pca mets only in bones where there is high calcium traffic.
I'll be real lucky to keep my quality of life going for 1 more year, and after that there would only be Cabazataxal with maybe Carboplatin added, or experimental substances that some docs claim work well, but which have not had any trials done.
Ac225 might be real good for you to zap both bone mets and visceral soft mets but you may well have permanent dry mouth side effect. Research continues on getting nuclear isotopes to be targeted to mets without using ligand chemical which relies on Pca making PsMa which is chemical that appears on membrane surface of Pca mets. So Nuclear medicine needs more break throughs before it becomes better available therapy.
Costs of 10 x PsMa scans and one FDG PET scan is up to usd $6,000 since 2016. 6 doses Lu166 were usd $42,000 plus travel costs. Ra223 are about usd $7,000 each, all from Theranostics Australia given at a Sydney private hospital, and there is no rebate for these costs from our Aust Medicare. There are online descriptions about just what nuclear medicine is and what it does, and I suggest you visit Theranostics Australia website.
Some USA men are flying to India for what appears to be good service for Lu177.
If you have Brca1+2 genes that cause cancer in women, you might have olaparib, but never assume it might work.
I cycled 53km today at good speed, no Pca pains in bones afaik.
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