I wondered what thoughts were re this first in human vaccine trial?
Just had my third undetectable PSA following a mad 7 months of Lu-177, Docetaxel. SBRT, VMAT and two Brachi boosts
Now just my monthly Degarelix injection and daily Apa . I hate having no testosterone ( but better than last Nov mets popping up everywhere). Please let the science come tgat allows us to have testosterone!
this first in human trial has a base at my hospital in UK. Phase 1 trials are scary of course .. is a vaccine really going to be ‘the science’ .. should I enquire!
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Brysonal
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a good chunk of me agrees 100% with you. I probably would screen out and we all know even tested vaccines have adverse outcomes for some.
I am rooting for the trial but also aware there are times phase 1 is the only opportunity as money dries up to move treatments into later phase clinical trials and the timing/ length of time etc etc..
Anyway holiday next for me. Three weeks in the sun and will try to forget about the micro mets, knowledge of which is the underpinning cause of my anxiety of course.
i never search for phase 1 trials, but TA turned me onto one that combined two FDA approved drugs in combination (LU-177 PSMA, and SBRT) at MSK so there was no dose toxicity testing BUT after qualifying over phone and driving 4 hours to NYC I got rejected for having 5 tumor locations, two to many. That is two trials i failed to get into. One was phase 4 rucaparibb, and the above mentioned one.
I ended up doing Lupron and thanks to MGH early administration of darolutamide instead and glad that I didn’t do those trials.
ENJOY!! your 3 week vacation and put this behind you for those 3 weeks and smell the roses
I would also take that trial into consideration but I am still only on Degarelix injections more than 4 years after starting ADT. I was diagnosed in april 2018.
I did participate in the PSMA scan trial at MSK, which did find two locations (media stinum, and left clavical, lymph’s only). No action was taken on it at the time accept recommendation for abi+Lup.
Hi Read your reply, my husband went to MSK for a second opinion and we both felt awful leaving, we ended up feeling really bad, MSK MO totally ragged on about our top MO in NY at the same time calling him a friend, it was awful.
Do I think immunotherapy....vaccines, immune boosters, immune suppressor inhibitors.. are the answer to finding a cure for cancer?? The answer is yes... It is not ARPI drugs with ADT, chemotherapy, radiopharmaceuticals... these all have a role in sustaining us, but they are not cures...
You describe yourself as having a mad 7 months of treatment... Are you in a solid mental frame of mind??? As a participant in a trial, you must keep track of things like side effects, when you take the meds, and answer questions daily..(you get a questionaire form). Phase 1 trials involve dosing and side effects... you do get the vaccine without a doubt... The side effects are unknown....what happened to the mice that took the vaccine?? What motivates you to do the trial, and will doing the trial effect your current med regimen?? Have you talked with your family about it?? You are 59 and doing well now...
I was in a trial, but there was limited risk to it for me... I have looked at a couple trials since... I applaud your interest in wanting to do a clinical trial...it takes guts... It advances the science... I think you have some questions to answer before you even think about taking steps forward... Not a decision to be made in 1 day...
Like Nalakrats used to say, I am reporting (my own experience) and not prescribing... Good luck on whatever path you choose...
Thank you for the reply. I probably wouldn’t pass the screening and it’s a very small cohort over three cancers and 5 UK hospitals
‘The first part (Phase 1a) comprises a first-in-human (FIH) multiple-dose, sequential-cohort 3+3 design to establish a dose of OVM-200 that is safe and tolerable, and that elicits an immune response in humans.’
Since early days of my advanced diagnosis and my consult with a genetics professor leading to a chat about the lack of understanding of why some peoples immune response to cancer cells is lacking I have held on the hope that a vaccine will be discovered so all other treatments were just to keep it at bay until the day the science comes!
I had nothing identified by the gene screen but dad died of prostate cancer and here I am ( with a son) so I live with hope.
I am working full time, just back from the gym, heading off on a 3 week holiday on Monday with third month of undetectable PSA . Blood counts still a bit low and definitely not me any more. No libido, fatigue, lower drive at work, hot flushes.
London MO says ADT for life unless we get a breakthrough
Finland MO ( where I had my Lu-177, Docetaxel, 20 x VMAT radiation and 2 x brachytherapy says we will review July 2023.
So 1/4 way in to review point but yesterday was my 10th Degarelix injection and this is month 3 of Apalutamide tabs.
So I am rooting for a vaccine solution I guess.
After articles on first recipient ( ovarian cancer patient) getting it last November there is not much published but am following the company.
I am aware prostate cancer has proved tricky and find it interesting they are looking to test after successful treatment in a period of stability to see if they do get an immune response.
I have no symptoms of PCa, my scans were good post Lu-177/ Docetaxel/ ADT combo, PSA undetectable but all wisdom says I have micro mets of course and if it is the hormones/ ARPIs suppressing the micro mets then the cancer will win in the end.
Which leads me to be very interested in this stable period in Mateo Beach’s J591 experience and the vaccine developers of course.
If I get a recurrence and a hormone resistant diagnosis in the future I guess I want to think I did everything I could to prevent that outcome.
Anyway holiday next steps- hope next month to see blood counts in perfect norms ( ever an optimist!)
Test your vitamin B12 levels and supplement them carefully. The vit B12 is stored in the liver for years. You don't have to take a daily multivitamin. I tested low but not super low, as a result of metformin (i stopped metformin for good)
I reviewed the trial for OVM-200, and it seems that you could do your apalutamide and degarelix shot. My question is do you have metastases that can be measured or have the tumors resolved post treatment?? Part of the trial is measuring tumors and monitoring growth,... The vaccine concept is promising using the recombinant overlapping peptides.... I think you might qualify...
When I was at Cleveland Clinic, I met my MO through the apalutamide clinical trial pre-surgery, and he explained to me that there was limited downside doing the trial.... Have you discussed the idea of doing this trial with either of your MOs.?? One of the things my MO says when I ask about trials is this statement, "If it isn't broke, don't fix it !!". It still doesn't stop me from looking at trials...
I read that you have only been "undetectable" on PSA for 3 months... I do wonder if you should not continue your current course and see if you remain "undetectable" using your current regimen...
Ultimately, the choice is yours... All posters have an opinion on the forums, but very few are medically trained... Like you, I have male children and wonder what I can do to make sure they do not endure what I have been going through for the last 5 years... Think it through and don't rush it... One of the things I do to advance research currently is give money to the Prostate Cancer Foundation, where 82 cents out of a dollar goes to research for a cure...
I am going on a 3 week holiday tomorrow and hoping when I next see my London MO on my return I am hoping for month 4 at undetectable and hopefully bloods keeping heading to normal. I will ask him if he is aware ( the hospital he works for is one of the 5 UK sites) and what his thoughts are.
I think my observable mets are all resolved ( based on last scans in May and undetectable PSA) so was thinking they might test for antigens as per the covid vaccine when they say ‘immune response’ however I am guessing of course.
For some reason this is feeling much lower risk than say the CAR-T trials or the use of Lu-177 in late stage cases but I really can’t justify why I feel that!
No harm in a conversation I guess but now for a holiday.
You are most welcome...enjoy your vacation....talking with your London MO should give you a feel on what his thoughts are on the trial and the potential for the vaccine... I agree that it is less risky than CAR-T trials as cytokine storm happens more often in those type of trials...
I would think measuring CtDNA before and after might be valuable in determining vaccine efficacy, but that is a guess...
Why??? You have already discussed this with cesces, tango65, and a variety of others, and have your answer....You prescribed against it... You are not looking for advice... Did you review my replies to Brysonal??
You may have read the responses of others, but you do not read what I am putting out and that is for sure... A lawyer?? Not even close...
As for appreciating an answer...so would I... why do you care?? It is not for advice...you made your decision regarding Phase 1 clinical trials based on advice from others and your own beliefs... You prescribed against it...
If you want to find out why people do clinical trials then read the post...
i would actually consider every (phase I, phase Ii and also phase Iii clinical trials, but I may not participate in either of them.
I am reading every comment from everyone. I have an open mind. Until now I only participated in "ADT and me" organized by professor Emmett here in Sydney.
I believe that one of the reason that I am still doing so well 4.5 years after my diagnosis (my PSA is under 1.0 and only on Degarelix) because I participated in that trial.
I wouldn't recommend to anybody to participate in any clinical trial trial without first trying out all available standard of care first.
I also would not recommend to change anything if something is working.
I would gladly do Provenge but the cost is prohibitive for me.
Therefore I will stay on Degarelix.
I am a very slow mover. I am considering everything but am not moving until my cancer is slow moving.
I definitely not rushing to poison myself just for the science. I am now only on ADT and blood pressure medication.
Professor Richard Epstein said to me that some people live long on ADT alone.
I can also move very fast if ther is a need. I have an open mind.
The biggest challenge with the prostate cancer is to avoid over treatment.
I always ask myself a question would this clinical trial extend my life?
I am aware that there is a big money to be made. But I have to look after myself first. Therefore my priority is to survive as long as possible without poisoning myself or radiating myself to death.
Ee already suggested Provenge to you. Tall Allen said that he believes that Provenge is available in Norway. Ones you are in Finland you just continue to Norway. (Email to your Finnish oncologist for opinion about Provenge and if it is available in Norway?)
ah I think when I looked at provenge before it was only approved at castrate resistant strange even in the. USA. I am looking for something that gets your immune system to work ‘before things get that bad but will indeed ask!
you can also ask Tall Allen. Provenge is much more effective in prolonging your life when it is used early. I belive the only problem with using Provenge in a HSPC in USA is that medicare will not cover it. If you pay from your pocket there are no limitations. Ask Tall Allen
ah yes. I haven’t spoken to either about provenge. I don’t know why it hasn’t made it to Europe apart from co going bust of course. Good flag. Thank you
"Are there 10 year outcomes on it yet do you know?" Can you explain? I didn't get it. I just know that when your PSA is very low Provenge is prolonging your life more
I am by no means an expert but I thought all approved FDA treatments had to do 5/10 year follow ups on the first patients to be treated so they can update stats on things like progression free survival.
So things really established like RP / RT in the local prostate setting have 10 year stats but something newer like HIFU doesn’t yet.
I thought that was how it worked but no expert!
No idea for example when the first patient got treated with provenge!
my oncologist professor Joshua did not recommend Provenge as it doesn't reduce the PSA.
But I know that Provenge does extend survivor for four months, even more when used early (low PSA). Ask TA as he always recommends it. Try to Google it
I’ve done a post. Thank you. I think I now class as heavily pre treated so if I do go resistant I am aware of the risk of non PSA producing tumours which I guess must be what provenge deals with but no idea really!
Another reason for asking about monitoring approaches as well.
i believe that TA hinted that Provenge my be effective against CSC (cancer stem cells), at least I think so. Woul be good to contact him.
I asked my oncologist about Provenge and he was not very enthusiastic about Provenge by saying that it doesn't reduce the PSA.
It is not approved in Australia and I asked him where can I get Provenge and he said if i have 120k USA $ than I can get it in LA. I don't have this money.
In USA medicare pay if you have a castrate resistant prostate cancer. Otherwise you have to pay yourself.
I believe it is effective against cancer stem cells and that is why it doesn't reduce the PSA. I an not an expert, only my guess.
I've been trying to reply but something weird is happening to my text. Provenge not available in Norway- only US. TA sometimes recommends Apeceden in India.
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