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Evidence that the Medical Community is Failing Prostate Cancer Patients !!

NPfisherman profile image
12 Replies

Greetings FPC'ers,

So I saw this on Advanced Practice Update and just had to share. When the K9 Caped Crusader and I say, "Get thee to a Center of Excellence (Not a nunnery)", well we mean business. Below is an article from this week's edition of Practice Update-Advanced Prostate Cancer, and it speaks volumes to how the medical community is failing prostate cancer patients.

practiceupdate.com/c/138277...

Close to 50% of patients DO NOT receive doublet therapy--ADT plus an ARPI drug (Androgen Receptor Pathway Inhibitor) which should be SOC everywhere. Look at the RESULTS section and the CONCLUSION section if nothing else.

But Don Pescado, you may argue, STAMPEDE only proved the use of abiraterone plus ADT in MHSPC in 2017...

prostatecancerinfolink.net/...

EXACTLY !!! So why isn't everyone on an ARPI plus ADT from the beginning at the very least, and certainly in low volume disease as per APCCC 2022. Here's why--people refuse to change how they practice and are sentencing some to earlier MCRPC. ...and earlier death. What would happen to the OS rate if only practice would change???

If you are a newbie, and this is your new issue, act immediately !!!

As always, I welcome comments.....

Don Pescado

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12 Replies
cujoe profile image
cujoe

Well, One factor that comes into play - is cost. I have read that there is legislation floating around that would cap Part D out of pocket @ $2 K, I haven't confirmed that, but it would be an enormous savings for patients on the newer oral meds that are covered under Medicare Part D. Not sure any of this will get passed or what its effect on those not on Medicare would be. Currently, Plan D maxes out for all tier 1 drugs not administered in a clinical/hospital setting at > $12k per year. It is the same cost issue for CLL patients on the current SOC BTK-Inhibitors as it is for PCa patients on any of the new oral meds.

This will eventually come down to a battle between the special interests. I'm pretty sure we know who will win that one.

Keep Safe / Stay Well / Be Happy - Ciao , K9

PS Here is a recent update on the status of the "proposed legislation"

originalText

NPfisherman profile image
NPfisherman in reply tocujoe

K9 Wonder,

Thanks for that information. We are all at Medicare age or darn close, so this is important. As we have talked about, abiraterone is generic and yet, why is the price nearly the same as before it went generic ?? Big Pharma plays a tune and we are left dancing to it... Mother of Pearl...

Fish

MateoBeach profile image
MateoBeach

This post is purely theoretical speculation on my part, so no one should assign it any greater authority than just musings.

We know the progression of cancer, from in situ to locally invasive, to development of tumor micro environment enhancing factors and evading immune surveillance and ultimate metastasis are driven by accumulated mutations (genome instability) and inflammation. The genetic mutations are continuously being tested for survival advantages (selective pressures).

That is why all therapies that do not promptly cure but only suppress prostate cancer eventually fail as mutated resistant populations become dominant. And so it is with ADT. Removing most testosterone to deprive a powerful growth stimulus, but one that does not actually kill the cancer (all or most).

So ADT slows the cancer’s growth and replication and thus prolongs the time to castrate resistance and thus prolongs survival. Yet it is simultaneously providing the very selective pressure for the emergence of castrate resistance. Catch 22 again.

So now we have proven that adding additional advanced therapy, AAR drugs and or chemotherapy (simultaneously or sequentially) survival is prolonged as is castrate resistance. That makes perfect sense since the combination will further suppress cancer cell replication. And new mutations can only arise during replication. So the advantage of doublet or triplet therapy over ADT alone is relatively easy to understand from this perspective.

However, all of these treatments carry multiple heavy costs. Not only financial as cujoe points out. But also heavy costs in terms of adverse side effects and deterioration of the body and normal functioning in many domains, as we know well. Quality of body, quality of mind and emotions, capacity to perform and do what we would like to do, in the world, in relationships, and so on. Quality of life is at least as important as overall survival. And each person must find their own balance to that equation.

One thing that is needed is researching strategies to mitigate both the continuous selective pressures on the cancer. And at the same time improving QOL. Intermittent or alternating therapeutic regimens, perhaps some form of BAT comes to mind (because I am doing it). But these are not yet proven in the long term yet. And have scarcely been explored in Hormone sensitive PC where it might be even more effective in delaying castrate resistance. The search, and the great adventure of life, continues.

NPfisherman profile image
NPfisherman in reply toMateoBeach

Comrade Pablo,

I agree that there should be more than just treatment with drugs that worsen QOL, and more study is needed on BAT, as well as anything else that might improve QOL and yet suppress cancer progression/ mutation. There are suppression of gene mutations projected that should halt disease progression and leave things at a standstill.

I complain, but the reality is that we have seen a large number of drugs become available in the last 5 years. Sadly, I still see newbies come on that are receiving Lupron or Eligard only at disease onset... That is criminal in my book..Hard to believe that post STAMPEDE and LATITUDE trials that this should happen 4-5 years later... Saddening...

Dave

MateoBeach profile image
MateoBeach in reply toNPfisherman

Part of it are the urologists who are not urologic oncologists but surgeons with over simplified playbook. They do the trans rectal biopsy. They sell and do the surgery ( prostatectomy) and for the 20%ish who have BCR they put them on Lupron/Eligard until failure.

How are so right: Get thee to a center of excellence or similar comprehensive integrated cancer center.

Be not lured by the siren call of Proton Beams, HIFU, Gamma Knife, Cryotherapy, focal Laser Ablation

or other highly promoted proprietary technologies. When you have (a very expensive) hammer . . . They are shiny objects parading as superior technologies.

NPfisherman profile image
NPfisherman in reply toMateoBeach

Indeed. my urologist said, "We'll put you on Lupron and you'll be fine...". Needless to say, I went to Cleveland Clinic and got started on Lupron and abiraterone together. The issue is that as long as urologists continue to give lupron without an ARPI drug, then patients are stuck on a path of early castrate resistance and death. It doesn't have to be like this just because it is easier to start a patient on Lupron and make some bucks on the injections... The ignorance and greed of the system...

DD

Cooolone profile image
Cooolone

One though I've been stuck on since my PCa progressed and remained fairly persistent post RP is the use of therapy lines! And I'm posting this as a question of course...

I've been through quite a collection of therapies in a short span of time, RP, then ADT & RT, then Abdominal Surgery for Appendicitis that actually found unprecedented mets in my Peritoneal and Appendix (PCa+), then ADT & Chemo and still recently failure again...

So the mono-therapy of ADT, is it considered one line to be used(?). And when it alone fails does adding the ARPI drug along with ADT represent a second line and it works until failure also? If so... Wouldn't it then be akin to jumping and burning a line of therapy and therefore hasten progression?

I know the two work and does work together, but do you buy extra time by just using mono-therapy, until adding another agent is required? Then go to adding a third...? I have read too then possibly later using Chemo when all else fails sometimes causes reset and ADT sensitivity for some, and you get to do it again? Would you return to just mono ADT, or Triple, double? Etc.?

I'm just curious, as to the continual bombardment of drugs being thrown at the cancer, which it eventually learns how to work around... It is better to tickle with the least necessary, or burden it heavily until it strengthens itself? Either way it seems it does...

This was my breadcrumb trail that led me to Adaptive Therapy and the cycling of drugs not at failure, but in a method to keep the cancer from learning resistance. An interesting and compelling prospect in regard to "lines" of therapy... The information is no longer available, and I'm beginning to search and investigate this elsewhere.

Thanks for posting and stimulating thoughts on this...

NPfisherman profile image
NPfisherman in reply toCooolone

Cool,

The results from LATITUDE and STAMPEDE showed that the early addition of abiraterone should be done for improved overall survival and failure free survival ( MCRPC) than ADT alone. It is what is endorsed by the APCCC 2022, the leading prostate cancer specialists in the world. I hope you had whole pelvic radiation therapy when you had salvage therapy.

Fish

swwags profile image
swwags in reply toNPfisherman

I appreciate your post fish and hoping you or anyone/ everyone address Cooolone's thought on the use of therapy lines. I for one missed the boat on early detection and have the same question as Cool.

NPfisherman profile image
NPfisherman in reply toswwags

Coolone and I had a "chat" and I hope I have given him some things to consider. Adaptive Therapy was posted on in another forum by a poster named Nalakrats. Adaptive Therapy has been posted on by Cujoe on this forum, and MateoBeach on APC. Just put Adaptive Therapy in the search bar. As far as therapy lines, I will "soon" be putting out a post on therapy as soon as time permits...This will take some time...patience all, please

Fish

Cooolone profile image
Cooolone in reply toNPfisherman

Awesome and thank you! I will do more research as well.

NPfisherman profile image
NPfisherman in reply toCooolone

Glad to help...we are all on this hell ship together.... maybe some day we will all sail home, put away our oars, and walk away with our loved ones never to return....wouldn't that be the day !!!... Do the research and talk to your team... your disease has been kinda isolated in the pelvic area as I recall, and focusing searching and treatment on that zone is useful IMHO...

Good luck and good hunting....

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