I have been in discussions with another forum member about a clinical trial, and participated in 2 trials myself....one for proof of concept in genetic testing--a blood draw--got me free germline genetic testing( I do not even list it on my profile...a blood draw..), and a second-an apalutamide trial prior to surgery. So, after some discussion with another person, then I am wondering ....
What inspires people to participate in clinical trials and is there a specific time to do them??
For those that have participated in clinical trials then I thank you in advance for participation. For those that considered a trial or were ruled out, I thank you for your consideration or attempt to participate. For those that choose not to look at clinical trials so far, there is NO SHAME !!!.
On this hell ship, we are all in service under our captain, Stage IV Prostate Cancer. He is a horrible captain, that leaves some alone for the most part, messes with others, and tortures others horribly... In 2020, an estimated 375,304 people worldwide died from prostate cancer. He is a Killer... We are all river boat gamblers on this hell ship... we carry a boot knife, prepared to fight the captain, and never know when our captain will decide to change the game... everyone chooses their own pathway with the captain... there is no wrong answer... we do what pathway seems logical to us... that is why there can be NO SHAME when it comes to not participating in clinical trials... Everyone plays their own hand...
So what inspires people to do these trials?? Is it because they are old, desperate, or dying?? Is it a chance to advance the science because they have male children or grandchildren?? Is it because they have researched the drug and feel the risk is worth it?? For those that have looked at a trial, tried to participate, or participated in a trial, what moved you ???
Is there a specific time to do them??
I look forward to hearing the thoughts of the forum... As always, I welcome participation...
Don Pescado
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NPfisherman
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For me, the free germline testing was kind of a no brainer... I also have 2 sons, so knowing this information would be of value to them...
Now, the apalutamide trial was not without risks. From the JanssenMD website: Cerebrovascular and ischemic cardiovascular events, including events leading to death, occurred in patients receiving ERLEADA(apalutamide). Seizures, and a variety of other side effects occur with apalutamide... For me, I had sepsis post biopsy and my PSA went from 5+ to almost 20 due to the cancer plus prostatitis... This was a chance to shrink things down, drop my PSA, and get things under control prior to surgery... It seemed a logical choice, and after discussion with my MO, I participated... I did the research and the risk seemed worth it!
As for the timing, it was just the right time to participate... I got the right cards on the deal, and it was time to gamble...
There is another reason... as a person in healthcare and my interest in science, I do feel obliged to participate in trials to advance the science for patients...
I've participated as well. With genetic testing (multiple times) once post surgery and again post metastatic discovery. Also participated post RP with Salvage Therapy, entering a trial that had RT along with ADT, and another more aggressive arm of RT & ADT with adding Zytiga. I wasn't in the aggressive arm, was like the SPPORT Trial. Also G68-PSMA pet scan trial before approval!
I could have exited the SPPORT Trial and sought the same treatment outside it, and in retrospect, maybe I should have. But the choices at the time made it readily better than just ADT or other mono-therapies. It's all good! Even though my consistent, Persistent PSA, and progression I'm sure has screwed the numbers hahahahaha. But, if someome like "me" comes along later, maybe it will help them, regardless of the benefit to myself (or not).
I'm than one in a bazillion patient, I dont exist in studies based upon my PCa presentation. Not sure how any studies then, can help lead me to a path with clearly defined result possibilities. So, no matter what I do, my results are distinct and unique, so not sure how it may help others either!
But onward we fight through the mist, through the fog of these decisions! If it's possible to provide a beacon to others, then so be it, glad I could help! Trials aren't the only answer, but it does provide access to cutting edge diagnosis and therapies as well.
Thanks for your participation and your reply... Indeed, we are all unique, but by using multiple subjects, the science can determine efficacy or not in treatment and that is a good thing. Interestingly, if the scans had showed my lytic lesion, then I would not have had surgery or participated in the apalutamide trial... Lytic lesions do not show up on bone scans unless extremely large... it worked out to my advantage....
This is an aspect of clinical trials, and that is finding test subjects that meet the requirements... The fact that you could have bailed and did not is noble... You advanced the science at a cost to yourself... That is selfless...
I read your reply and it reminded me that there was a sticker on my power hitter...."Onward through the fog !!!"... We fight on through the mist and fog... I helped make WVU-- the #1 Party School for years until I graduated...
Kind of timely your post in my current scheme of things.
I think most of us here on the forum are blessed to have a wealth of information. A little further dissection of what our medical team tells us for example.
I started fully metastasized and knew that after the benefit of chemo wore off I would be onto Zytiga and thats what happened. Then of course now Zytiga benefit is gone.
I had it in my plans to discuss with Dr. when the Zytiga failed to do chemo again to re-set the playing field so that Xtandi or other would possibly bring benefit.
Well I stumbled, I feel luckily, into a trial my Dr. recommended which gives me the chemo I want and possibly Ra-223 in combo with the chemo. I have also seen Ra-223 as a possibility in my future so this idea of possibly getting it combined with my chemo is quite satisfying.
It is an unblinded trial so I will know whether I got the Ra-223 or not and if not and it looks beneficial I can have it added after my chemo therapy since Ra-223 is approved already for stand alone use.
I've noticed in myself that my interest in trials is almost selfish. I have so far responded about average to SOC's. So in trials I look for what I want more than going out on a limb to help others.
I guess survival mode determines to some degree the who, the what of trial participation for me. However I might some day find a trial I think fits the bill for me only to end up a failure and not help me. Then I might be looked at as a trooper taking the trial as a cause to help others. But again in my humbleness I must say I look at the trials as to how they might help me.
This trial for example uses 2 tried and true treatments so risk is low and benefit is potentially high. But yea if I am helping others well great! I do think others though really have been the hero's/troopers who paved the way for us in trials. When I presented with my initial dx skull to shins metastasis I was elated that chemo was offered then not saved for later. I have the guys in the Charter and Stampede trials to thank for that.
Also again I have been lucky to respond to some degree to SOC. I have a great deal of sympathy for those who don't and are I hate to say in need of entering a trial based a bit on possible benefit and on a hail mary.
Trial I will be entering (still have all the pre-trial labs, forms, to fill out starting today to be approved for the trial) is the Dora trial.
Thanks for your participation and reply... It just makes sense.... As for early chemo, in people that are heavily metastatic, that too makes sense... Sounds like you are in good hands... The DORA trial is big... The fact that you participate for yourself is logical... The fact that your participation may help others is noble...
I think that as we go along, the medicine will be more precise and the combos will be a known factor for treatment... This is the Golden Age of Oncological Research.... As I said to the K9 Wonder, the treatment paradigm is evolving rapidly... Treatment options are increasing....I hope we will get to a point like HIV, where you take one pill with 2-3 drugs in it and achieve disease control... It is not a farfetched concept...
I’m currently waiting to find out if I’m eligible for the AMPLITUDE trial. This is a double-blind study comparing SOC of ADT + Abiraterone with that plus Niraparib (a PARP inhibitor) for de novo mHSPC cases like me. Apparently, there is only a 6% chance that I will have the DNA repair defect required to be eligible but the genetic testing I’m getting to find that out will be very useful even if I don’t qualify as it will hopefully help point to the most applicable treatments for me.
TBH, I’m apprehensive about going on the trial if I do qualify (and get on the active arm) because the SEs of Niraparib look pretty nasty (but then again, all PCa drugs have some potentially nasty SEs I guess!). On the other hand, of course, it could be a very effective treatment for my cancer.
Another benefit of going on the trial is that I would get much closer monitoring and care than I would get from the standard care that the UK NHS provides.
If I don’t qualify, I’ve already drawn up a list of other potential trials that I could apply for as I do think they are vital to help find better and better treatments for us all and for those to come after us.
Thanks for applying to the AMPLITUDE trial and your interest in other trials, as well as your reply... Being honest about your apprehension is a good thing... The unknown is freaking scary, and yet.... You go forward.... It is brave IMHO... Being able to express it is half the battle I think in dealing with it..I had apprehension when I did the apalutamide trial, and later...when I started abiraterone... we face our fears, because we are in a fight for our lives with this disease...
Your desire for better monitoring is just logical, and don't we all deserve that option ?? Your desire to help find better treatments is noble..
No downside since they are doing the genetic testing prior to entry. That is the bes kind of trial opportunity. And if you don’t have a qualifying genetic change, so much the better not to have it!
I have told various versions of the hell ship story on forums... I guess it is my version that comes from a Jack London classic, "The Sea Wolf". It is one of my favorite books. The classic tale of good vs evil set on a sealing schooner leaving San Francisco for the Sea of Japan. In this case, I described the Captain being PCa, but other times, PCa has been the ship that we are trapped on...
In the end, I just want us all to get off the hell ship alive and go home... I hope we all see that day, but I think it is some time away....
actually Jack London did build a ship and set out across the Pacific in real life. He may have been the Captain. But he brought along an incompetent and inexperienced crew, including the Navigator. Many lessons in that! Don’t recall the biography title, but he did survive the ordeal.
thanks for the compassion and understanding you show in your post Cap’n Pescado. Spent 4 days with Lulu and K-9 this last week in Prescott and were thinking of you.
I did a sequencing trial of Provenge (before or after starting ADT) back when BCR. Would never have been able to get it except for the trial. All expenses paid except travel. Trials are a way to access the very best possible treatments before limited FDA approval. But choose wisely! Pablito / MB
Glad you had fun with the guys... Good stuff.... this post originated from exchanges I had with another forum member... Yours is a sound reason for doing a trial... knowing there is a benefit to you and getting medicine that is super costly, and a chance to contribute to the Science... Logical... Thanks for your participation in a trial...
Forum members... trials are not always for the old, the dying, or the desperate... Patients participate for a variety of reasons that make sense to them...
Having just passed screening and had vaccine 1 of 3 on the OVM-200 phase 1 clinical trial I have read this thread again after pondering on whether to do this or not and eventually deciding yes.
I am definitely in the ‘hope is a good thing’ camp and my genetics professor from the Royal Marsden told me last year the ‘science was coming’ and that hope has given me energy and focus even when tumours were popping up all over my skeleton last year and I had to accept my low risk G6 diagnosis was now fully metastatic cancer and as my urology professor described me I was 1/1000 unlucky to be where I was.
So I follow the science, the standard of care, the extras that can be done out of pocket , the lifestyle no brainers like exercise and weights and the clinical trials.
I wanted to try early Lu-177 due to the pioneers who told their story and the vision clinical trial volunteers who got it moved to SOC for late stage. With no PSMA addition available ( phase III) in my time scale I flipped to an out of pocket option.
I benefitted from the stampede trial volunteers as I fell into the sub section of men who benefit from radiotherapy to the prostate even with distant mets.
I benefited from all the volunteers who took the advanced hormones through to standard of care and also those who participated in the ‘triplet trials’
A combination of these therapies took my PSA to the ‘less than’ sign and cleared up my scans.
But I’m still stage 4 and still watching the science.
So I guess it is the hope ( which I believe is a good thing) that led me to saying yes to the clinical trial phase 1 vaccine today, however the hope driver was supported by 2 MOs advising it was low risk and to do it if I could afford the time.
I am v grateful for all the clinical trial volunteers over the years moving the science forward but I wouldn’t want anyone to do anything without serious consideration of the risks.
These risks have to be a personal judgement as for everything in life.
So it’s a combination but the hope is a major driver.
Like you, I believe in hope. Where would we be without it?? As I said in my opening reply of this post, I feel an obligation as a healthcare provider to participate in trials. In my posts on clinical trials, I always try to remember to pay homage to those who volunteer to participate in clinical trials. A poster asked me if I would consider a Phase I clinical trial, and after hearing them advise someone that they were not "too old", or "too desperate", or "too sick" to go and do a Phase I clinical trial, I chose not to answer. Quite honestly, it is irritating to me to even hear that stuff. If I volunteer or consider a Phase I clinical trial, then I must be in one of those categories or worse....perhaps I am insane...
Well, call me crazy, but I wrote William Finch, the contact person for OVM-200 and threw my hat into the ring... Hopefully, I will be chosen to participate as well.
Thanks for your participation...if I am chosen...maybe we can meet up somewhere... who knows, maybe share a pint with TFBUNDY ....
I actually just remembered I applied for the Bullseye trial in Holland when I was oligometastatic (Lu-177 immediately pre-HT). It was the start of the pandemic, and they were only taking locals but did signpost me to Finland so one door shuts and another opens.
Let's hope William Finch is excited to get participants from other countries. No side effects to report this morning and a workday for me.
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Arnab Basu, MD, on Breaking the Barriers to Genetic Counseling in Prostate Cancer - ASCO Reading Room - MedPage Today - 04.07.2021
