As I walk this path with all of you, it leads to our shared inevitability. Choosing how is coming upon me. I know my Standard of Care options are becoming less and less with each failing treatment. I was advised by my MO team that trials are in my future. Question is which trial?
I have seen lists and information here on this forum that others have posted with a trial and the requirements etc… BTW, this forum is the most informative of any on the web.
How do you choose what is best for you? I have had some relative success with treatments that i had in the past. How do I correlate that into a trial choice? Like all here, I research all the time and there are treatment options that I feel are the correct path, not only for me but for this disease as a whole. The cutting edge stuff with immunotherapy and delivery mechanisms like radio ligand therapy is very exciting and has hope attached to it backed up with some very strong evidence of efficacy. I am relatively young and hopes that I can bridge the gaps between treatments until I find one that truly is effective for me happens. The advice I got was to “find” a trial.
That has many implications, and seems to me there could be a way of connecting dots that make the stars align towards a particular treatment. Finding the trial will also include travel, economic concerns, family and a whole host of other parameters exclusive of the actual treatment and efficacy of the trial.
I browse this site often and see that others have led the way. How did you choose? What would you advise? Where do most seem to be leading with all the newest treatments out there and the obvious to those already embarked on a journey outside the SOC treatements, how did you arrive at the decision you made to participate in the trial you are in.
Thank you for all that take the time to be an advocate here on this site. I see folks that genuinely care and respect others here. My appreciation to all those who participate.
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Thank you for responding. I am being treated locally here in Boca Raton, FL . I recently sought an opinion form MD Anderson earlier this month. Because of the reaction i had to the PARP inhibitor and my local MO’s strategy to use them, I sought the second opinion from MD. They did not disagree with his stance on using the PARP but based on my previous (very short) use and reaction to this drug, they thought I would have the same reaction if tried again. From there, they suggested a trial, again without any specifics to which one or why any trial would be better than another trial based on me. It was mostly like here is what is available right now. Most, or all were phase 1 trials. There was not any disadvantage to trying the PARP again, this time Lynparza with more oversight on dosage to more Tailor the treatment to me personally. In other words, adjust the dosage up or down with considerations to any adverse effects the drug may be causing me. It has only been a little over a week. Side effects are considerably less than the Talzenna before that i was only on for 2 days.
Thank you for this list. I will study it. Again, how do you step out and choose which is the best trial for ME, and not a random trial. I like the immunotherapy future. I had success with Pluvicto. I see Actinium in the pipeline and I see vaccines showing some promise. I have not read the literature you sent yet, but I would be looking in those directions. I read about some fast tracking therapies that FDA has granted due to the efficacy of new and novel treatments.
I have dove into educating myself as much as possible on all I can regarding my condition and therapies, but I do not have any formal training in medicine. If you are good, you can get a 30 minute of “focused on ME” time with your MO. I have found that they turn you over to another Dr who is recruiting for their trial.
My hope is to have this therapy work while I find the trial that “fits” me. I know, the cake and eat it too. Maybe I am expecting too much. I would really like to hear how others found their way and if there was a way of eating the cake too.
Tall Allen, I see your responses all over this site. Thank you for your input. I hope to continue dialogue with you and learn from all your experience. I might type and write too much. Please do not take offense. It’s just my way. Are there any trials on this literature you gave me that you have knowledge of? How would you go about choosing a trial? What indicators would you consider priority when making a decision on the trial you are embarking on?
Cancer sucks. Thank you again to anyone giving my post attention.
It sounds like you are in the same situation as my husband, with the exception of the age difference. Oncologist is recommending a trial. There are not any trials going on right now in our area. We are hoping there will be one in the near future at Princess Margaret hospital in Toronto. Please keep us posted on your journey.
I usually check the google and learn about trials. I recently joined clinical trials because the I found 3 hours video presentations and I thought it is good place to start.
I know, the cake and eat it too. Maybe I am expecting too much. I would really like to hear how others found their way and if there was a way of eating the cake too.
Sorry but having your cake and eating it too....is quite natural and doesn't prove anything unusual.......... but eating your cake and having it too, does...
I am not not one to give advice, I believe in sharing experiences. I am hesitant to share my views based on my experiences but your post is compelling and it certainly seems you are considering everything. I hope this helps you in some way.
My cancer is not (yet) as advanced as yours but I am always looking ahead. My focus continues to be to achieve longest possible durable remission with fewest SE's, knowing future treatments for me are likely if not probable.
For my third treatment, I sought what many would say is outside of SOC (a term I believe is very misleading as SOC (legally protected procedures) is a very broad range of offerings). I see what I did as within 'SOC', just on the very less common side - at least here in US.
After my unsuccessful salvage RT, I arrived at my decision for my third treatment, salvage ePLND, after considering the recommendation that I enter the STAMPEDE trial. I did not feel that I was out of options and I felt the drugs and chemo carried far more risks and SEs than I thought my condition warranted. And delaying it did not preclude getting the treatments later.
After the ePLND and with a PSA nadir of <0.010, STAMPEDE was again recommend. Again, I said no, and did one year only on Bicalutamide as added insurance (again IMO within 'SOC' but again very less common). My year on bical ended over five years ago and for the past three plus years my uPSA has been very low stable 0.03X range.
As many say <0.1 is the value to rely on, I share this perspective. Had I taken on the STAMPEDE protocol, it seems logical today my PSA would still be <0.10. Success would be claimed, of course. But the thing is, I have achieved <0.1 to this day without STAMPEDE, so IMO, the trail research data could claim a success with me that was not deserved.
I do not consider that I am cured, and in fact, just today had additional imaging to further investigate a recently identified liver lesion. I can rack my brain as to whether the STAMPEDE protocol would have 'cured' me, but I do not yet see any of these treatments nor trials as reliably curable.
Thank you for your input and sharing your experiences with me and the forum. Your type of input is exactly what I am looking for and researching for my own path to follow. If ok with you, may I DM you with some specific questions of your treatments and the STAMPEDE protocols you rejected. I’d like to know other logistical challenges that you went through choosing the path you took.
Thank you for your input. Have you started with the ARASENS trial you speak of in your bio? I have already been through what you are experiencing now with the Chemo track. I am curious of the trial track you chose and why. Australia for trial may be out of my reach until actual treatement and approvals my have been reached and unavailable in the US>
Started with ARASENS, finished chemo in February. I am now going on with adt and darolutamide plus zometa. The trial I chose is a very promising one (but there are others) and Australia because I think they are testing it there only for now.
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