Back from a great holiday now and had my 4th non detectable PSA result last Friday so 11th Degarelix injection followed plus Apalutamide pick up.
Online consult today with MO so have asked his thoughts on this vaccine trial. He clearly wasn’t aware of it though knew the lead guy ( saying he doesn’t normally deal with PCa- I pointed out it’s a 3 cancer vaccine trial covering ovarian and NSCLC as well as prostate cancer)
He got it up online and read the inclusion requirements - first of all saying ‘ you need a measurable lesion’ - I said ‘ bracket at end says ( NSCLC only’ and he concurred I seem to fit with stable prostate cancer. ADT is allowed to continue so he has dropped the lead guy a line to see if it’s worth a conversation.
No commitment, just asking for a conversation atm. It’s a ‘first in human’ vaccine trial but started last Nov so wouldn’t be as pioneering as those who went first’.
My red blood count is stubbornly under norms but he said it actually within norms for those on ADT? First I’d heard that ADT lowered blood counts tbh - I was thinking it was radiotherapy effects still!
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Brysonal
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Hi Brysonal, I have been following this clinical trial also but I missed the bit that said NSCLC and thought you had to have a measurable lesion. Thank you for posting about this. I would be really interested to know what they come back with. Glad you had a great holiday and that all is looking good. Best Nicola.
Thanks Nicola, lovely holiday thank you. I hope you are both well. The consult was only this afternoon but he said he would drop a note today. I’ll post if I get a reply. I know it’s phase 1 but for some reason it’s not feeling the most risky thing to do. I will be asking a lot of questions if I do get to have a conversation though
I believe that radiation and/or the mere presence of tumours on bones can cause reduced RBC (due to bone marrow failure) as well as ADT. My RBC was at the low end of the range even before I started ADT - now it's dropped off the bottom by around 7%. Should we be taking iron, folate and B12 to compensate?
Ben - Smurtaw has it right, in suggesting testing and going slow with supplements that might "stimulate the cancer". I have only done two short ADT treatments since my first BCR six years ago, but had low trending red counts due to my "other cancer", CLL. I mostly conform to a WFPB diet and chose to supplement with a min. dosage of non-heme iron about 3 x per week. That dosage has gotten my counts into the normal range (lower 1/3) ever since. (I am of the opinion that due to the possible stimulative effect of many dietary components and supplements, daily intake and serum levels need to be regularly monitored. Off the top that would include all B-vitamins (esp B-12 for vegans)+folate, Calcium, Iron, Vit-D, etc. Too high and too low values would be reasons to consider modifying diet/lifestyle and/or supplementation regimes. Most importantly, more is definitely not usually good.)
Vit C supposedly helps with iron absorption as does taking on an empty stomach. The chelated form is reported to reduce digestive distress and improve absorption. This link covers the issues for iron supplementation pretty well.
A search of posts by pjoshea13 at APC would be a good place to start understanding the roles of iron, B-12, and folate in PCa. His posts are a goldmine of information on all aspects of PCa. Good Luck. Ciao - K9
Thanks K9, I'll check out Patrick's posts. When first Dx, I went into supplement overdrive adding anything that I saw someone mention as may be beneficial. That got totally OTT so I cut right back to a few "good" ones - milk thistle, Pomi-T, luteolin, lycopene and Mega EPA.
FYI, my CO has just given me a prescription for Calcium and Vit-D3 due to the bone-thinning effect of ADT.
Ben - PCa MO's seem to all suffer from a lack of knowledge about topics like bone health. Thoroughly read through the replies of this FPC post to understand the full complement of nutritional components needed for bone health - as Vit D + Ca has not been proven to be beneficial (absent the other components highlighted in the post/replies). (Note: there were some replies in the thread that were from Nalakrats - and in erasing him from APC . . . POOF they are now gone!)
As for the Pomi-T you take, this NutritionFacts video tells the story of the supplement's origin and how you can put together an "or equal" with a few simple food components. (I add broccoli sprouts to a nut-butter sandwich sprinkled with a plant powder mix of pomegranate FRUIT powder, turmeric, black pepper, cinnamon, and ginger. I'm usually drinking a cup of green tea at the same time, so it should be at least equal to the encapsulated version - and even provides 2 additional components for added synergy.)
So, you might consider a similar at-home version of the store-bought supplement using spices and powders you can mix yourself at a fraction of the cost. Either way, may your complementary interventions give you super results and keep PCa in the cellar for alltime.
Ciao - K9
PS regarding the Mega EPA, do some exploration of the benefit-to-risk of supplementing either DHA or EPA. It seems for PCa patients, esp. ones like me who do not regularly eat seafood, it comes down to increased risk of PCa or diminished brain function. Heads we lose and tails we lose. I currently do a child dosage of a algae-derived DHA/EPA liquid supplement 3-5 times per week. While not resolving of all the issues related to DHA & EPA for PCa, this NutritionFacts video does provide a framework for doing so.
Thanks again, K9. One of the many supps I started then stopped was Oesteoplex which contains Ca, D3, K2, magnesium and Boron so I'll restart that rather than the prescription Ca and D3.
I bought a job lot of 5 bottles of Pomi-T so I'll get through those then look to a potential home brew version.
When I first joined the forum, I remember some posts by Nalakrats. Why was he erased?
There are several posters here who were sanctioned/banned elsewhere on HU, but Admin at "another PCa forum" have completely erased Nal's considerable contributions to the PCa knowledgebase. A tragic loss for all of us PCa patients and borderline criminal in view of the time he invested in support of his fellow PCa brothers. IMO, some people have the temperament for absolute power - and some don't.
Hard to believe that 2 banished guys showed up here 3 years ago and how much this forum has changed over the years. We have seen an increase in members by about 50 % and I think we have not hit our stride yet... Indeed, I asked Nalakrats to make the jump here several times over the years. What a loss !!!
Great talking with you today, my friend... Have a great week....
I too have been looking at the OVM-200 CT with interest now that it's confirmed that I don't qualify for the Amplitude trial. However, I'm wondering if it's too early for me since I only started PCa treatment (ADT) 3 months ago? Looking at the inclusion criteria, it states:
"... or in the case of prostate cancer, are currently stable on an antihormonal treatment."
I assume ADT qualifies and so long as my PSA is not rising, I'm good?
My CO said it's only for cases where all other treatments have been tried and failed. I'm not sure I read it that way so have sent an email to the lead Dr asking for clarification.
Absolutely, the only sentence that has me unsure is "... or prostate cancer that have already received at least 1 line of approved cancer therapy". What does "1 line" of therapy mean? How long must you have had that line for?
I'm sure you're covered, Brysonal, with 6 years of treatment history. I only started on Prostap 3 months ago (had my second shot yesterday) so I don't know if that qualifies as "1 line of approved cancer therapy". I hope I get a response to my email ...
As I understand it (perhaps stating the obvious), the general principle is going to be reduction of possible harm. I.e., what if this vaccine turns out to be ineffective, cause a different kind of cancer, or has other harmful effects? Start testing with cancer patients who are in a bad way, don't have long to live (and need it the most), so you aren't taking away any more human life than you have to if things go badly or it is ineffective. And are saving lives if works out.
As you say, you're stating the obvious. If any of us go into a clinical trial, we do it with full awareness that there are risks and it could be good, bad or indifferent - that's why it's a trial. My question was regarding clarification of the inclusion criteria.
either: exhausted current recognized treatment options; or are stable in a planned treatment-free interval following completion of a set course of treatment; or in the case of prostate cancer, are currently stable on an antihormonal treatment.’
Please let us know how your inquiry into getting into the trial goes... I may journey to England and join you guys on this one... My MO would have a fit, but I may be on vacation in 5 months if everything goes well, and this would be a way to continue treatment without ADT plus Zytiga......
MO rang about the clinical trial to explain it is a phase 1 study largely about the safe level of dosing. ( This I knew of course).
He says It’s very intensive and involves lots of visits.
I’ve suggested that he still refers me and that I discuss the details at a meeting with the research nurse.
Not committing to anything but I’d like to know how many people have received the vaccine to date, how many of those have prostate cancer, how many are hormone sensitive still and any / what side effects. I think it’s worth understanding even if I decide it’s not for me.
Also what does ‘’very intensive’ and ‘lots of visits’ mean. I work full time but office in London and my diary can flex. I mean I spent The whole of May in Finland!
An odd thing to be concerned about the amount of visits etc. You would think he would be more concerned as to whether it had any efficacy. I hope the meeting with the nurse proves to be more informative. Thank you for keeping us in the loop.
For me if the hospital visits are efficiently run I would be fine. If there is hanging around and disorganisation not so!
I will still have my monthly Degarelix/ Apa visit / consultant review to fit in too .,,
What they say:
’Patients who agree to participate in the Study and pass screening will receive 3 doses of OVM-200 in total at 2-week intervals as an injection under the skin. After completing treatment with OVM-200 patients will be followed up for side effects and to monitor changes in their cancer. Patients will stay on the Study for about 6 months in total during which they will have 10 hospital visits. The Study will run at around 5 sites in the UK.‘
The trial would inform of primary outcome re tolerability/ side effects
Assuming no terrible outcome it is the secondaries that would add value to me to help inform a decision ( if I was still PSA undetectable) in July 23 to take an ADT holiday
I would want to know if I’d be kept in the loop especially re if I was having an immune response:
‘Immune response to OVM 200 as measured by ELISpot for T cell responses and ELISA for antibody responses. [ Time Frame: 24 Weeks
I'm not sure where you were thinking of attending the trial but it seems to being run at the Sarah Cannon clinic in London - it's a private clinic so they may be a little more disciplined about not keeping you hanging around, but you can never tell. I feel it would be only fair to let you know if you are having a good response but there seem to be all sorts of rules that don't seem very fair.
Thank you. I emailed report but had to leave a disk by hand with security guard on reception today. He was not giving me great confidence he could pass it over but relatively small building so not sure why it would be difficult! Heigh ho - will ring in morning to see if it landed!
Last scans were Apri after Lu-177/ chemo combo but pre 20 Vmat radiotherapy/ 2 brachytherapy or Apa added. No idea tbh what they want to see!
Will update after convo
Any questions I haven’t though of?
1. How are the mice g doing!
2. How many humans since last Nov
3. Any CV events
4. How many PCa volunteers
5. How are they doing
6. How does it work!
Still just a conversation. Interested to understand what they are doing if nothing else!
I am particularly fond of how are the mice doing?? I think it likely that he will pass it on, since not doing so in a clinical trial looking for volunteers might create employment issues. I think you have it covered in regards to tx.
I’ll let you know how it goes. She confirmed receipt of my last disc although they could only read 1 of my 2 April scans in the UK they have my report too.
Clearly I have taken a very non standard path and that is quite unusual for UK patients who seem to largely follow the NHS standard of care path or the equivalent but privately with better bedside manner!
They not be able to get their heads round my treatment path and how that puts into their protocols.
Had the phone call ( over 4 hours after it was arranged). Consultant hadn’t seen the emailed report or discs requested and supplied in person. Heigh ho
Currently recruiting for 4th cohort. They have had 3 x 3 person cohorts so far with no adverse events. Tiny numbers clearly. I’m getting more info sent to me and a face to face conversation being arranged.
On a more real note another month another PSA test this week plus the joys of the Degarelix injection and picking up more Apa.
Will update when I get more info but as he hasn’t seen my scans or report he wasn’t clued up in my personal position.
Intense news. You could delay bone scan while you consider. Like you, I need something in new year. Get my testing next month and looking for something in March to June time frame to start to help when I go off treatment. You may wish to ask how many slots they have left for the trial.
Blimey that was quick. Any chance of getting another opinion to see if its a good idea or not? I did show that trial to DrK at Docrates - he was non committal about it but not negative but i have shown him a number of trials so maybe he didnt look too closely at this one. I suppose they are only speculating like us but backed with good knowledge. We are waiting on scans so can't try for it right now. Good luck with deciding.
Those night sweats are a killer, all of the other stuff as well. I told someone that you could bring 10 hot naked dancing women to my current work site, and I would ask," Hey ladies, could you toss me a water from the kitchen??".. ADT just sucks...
Interestingly, my MO just told me last visit that if I stayed at PSA undetectable for a year, that I would be put back on vacation. My first time, I was told 18-24 months. The reality of science is seen in the evolution of treatment, and treatment regimens.
His name is Dr. Moshe Ornstein at Cleveland Clinic, and you would not hear him mentioned as being at the APCCC 2022 meeting. (Not famous or international reputation) I found him by being involved in an Apalutamide trial prior to surgery that was offered to me. I like his bedside manner, the way he makes me a participant in my plan, listens to my input, answers questions. Despite having to go back on treatment, we are still doing 6 month follow up visits. I order the labs. My brother is an MD, and he really likes him too. I was stunned when he said 12 months, but he said treatments are changing rapidly. He and Dr. Garcia follow a number of oligometastatic patients that do SBRT, and are accruing data.
Here is some information on him, and the video is there, where Dr Ornstein talks about how he got involved in Oncology( his brother had leukemia), and how he is interested in clinical trials and less therapies to patients to maintain their lives as opposed to chemo..
‘I think the chance that the agent will make your prostate cancer worse or more difficult to assess is virtually nil. So, although there are reasons not to take part (inconvenience, chance of harm) I have no objection at all to your taking part’.
Still not certain . Fridays bloods are improved from last month but RBC and WBC though better still lower than norms.
I’ve said yes to a blood test and bone scan. I might not have to decide if I fail the screening!
Thanks Nicola, appreciate that. I wish i knew someone on it but tiny numbers. Anyhow I may not get accepted so I will stick with the one hurdle at a time method and rock up for another bloodtest. First scan since April to be fair.
I wonder if you could ask the trial team if any of the others would mind having a chat with you? I'm not sure what the 'rules' are with this sort of thing. You don't want to put them off you but on the other hand it seems common sense to link you up.
Had a CT scan this am and summoned back for more blood tests this afternoon ( they forgot to do the HIV/ hepatitis type suite apparently but my others are fine despite lower than standard blood counts)
No bone scan today due to tracer shortage. They are accessing my biopsy sample which was last done by a urology professor who works at this same NHS trust so should be findable!
Still thinking if I qualify I will do it as neither MO was anti.
Waiting for my MO to respond. It usually takes 3 days for responses from him. Nurse previews and forwards. For me, a chance to continue fighting while hopefully on vacation, and additive to my regimen. Good luck 🤞 ,
Thanks. Hope all falls in line for you. I am at Cleveland Clinic today for presurgical testing for RALP for my older brother. The family curse continues, but I think he was caught early enough...G6 ...prostate mri this evening. Hopefully, no EPE... and all goes well at surgery in 2 weeks.
Waiting on his MRI of the prostate, but if no EPE, then his odds are good... yes, we have no time machine or none of us would be here... The Science is getting us there to the point that no time machine will be necessary....not yet, but slowly getting there...Waiting for a word from my MO before throwing my hat into the OVM-200 ring...
Thank you. First injection do. Learnt today no’s 1-9 were all ovarian cancer sufferers so this cohort are the first with prostate cancer. 1 chap injected yesterday and 2 today including me.
Great news...glad you are doing well...my brother also had good news...mri of prostate showed no extra prostatitic extensions.
Heard from my MO and his big response on OVM-200..."It's not in the US...". Uhh, yeah.. At this point, I will message them and see if there are openings... He is comfortable letting me drive the ship ...I went off and did SBRT to my met post SABR-COMET..I knew then it was good stuff...said he was not sure... now, he says it is indicated in oligometastatic tx.
That’s great re your brother. I’m en route home now.
I did my first treatment in Delray Beach ( unfortunately it failed a couple of years later) so am a bit of a medical tourist! Appreciate clinical trials are more problematic so fingers crossed. For me I am watching the AMG one for if I go resistant and that’s not in the UK!
Good to be able to travel and get what you need medically... I take it you are watching AMG-509... I will shoot off an email and see what they say...APCEDEN is another possibility.. Glad you are done and headed home...
I've been following your posts on vaccines and this thread on OMG-200. Very interesting. You say you would consider travelling to UK to take part in the trial. Do you know how easy that is for a non UK citizen to do?
How are you doing?? No idea, but I figured I would give it a shot, and see what they say...no harm in asking.. Yes, I am considering traveling for this trial... If they say no, then I am looking at ADXS-504 for summer if still undetectable PSA, and trial is open..I would start vacation with a vaccine trial.
Hi D / Fish, we're doing well thanks (and thankfully) and it seems from your posts that you are too which is great. At this point we're not looking at joining any trials, but I always like to know what options might be possible - including overseas, although that might prove to be just too complicated. even if it were possible
I really like the fact that immunotherapies using different approaches - vaccines, BiTE, Car-T (although that seems somewhat more precarious) - are being researched and trialled in many places. As you always say The Science is Coming !!! and it gives us....HOPE !!! - that make me smile every time !! Cheers G&J
Glad things are going well. We appreciate your participation in this trial to advance the Science, and hopefully, get a solid boost to your immune system.
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New prostate cancer diagnosis @ 52
