1) Why do some advanced prostate cancer patients get offered "vacations", from ADT and others don't?
2) Why do some advanced prostate cancer patients have NO Chemo, and go directly to ADT + Abiraterone+Prednisone, while others begin treatment with chemo and radiation?
What are the deciding criteria ??
Not silly at all. It is my understanding that the choice to take a vacation is based on the severity of side effects, the level of cancer and the individual’s quality of life and their personal goals. Then you add in the input from their MOs and you have the reason why some do and some do not.
For the therapy choice it honestly boils down to whether it has spread or the potential to spread.
....so, as far as the therapy question, I had widespread bone and lung metastasis at time of diagnosis and went Straight To ADT. I'm approaching FIVE years, and there's been No Further Spread, I've been stable, and most tumors are nearly undetectable. I'm also on XGEVA, I have a lot of Bone and Muscle pain, have had significant bone loss (as per DX Scan...-2.3) and have even suffered a vertebral fracture (T-11 osteoporotic they say). My "second opinion MO " thinks the fracture is a result of the therapy being so effective that it shrunk the tumor(s), leaving a void which allowed for collapse. Anyway, thanks for your insight. Also I have neuropathy in my feet and legs. Is it true that chemo isn't advisable for neuropathy sufferers ?
All men are advised to go 'straight to ADT'. It's a matter of what's added for doublet or triplet therapy. At least in the US, Triplet therapy is now the recommended therapy for metastatic prostate cancer. Links posted below for Triplet info. My husband was diagnosed in 2017 abd went straight to ADT then oncologist team was deciding between abiraterone (plus prednisone) or chemo as his doublet- which had just been shown in 2017 studies as the best. After his 6 rounds if chemo he stayed on ADT and added abiraterone/prednisone. The reason they chose chemo as his doublet is because he was on the younger side and in good shape- depending on your cancer and your health otherwise- your oncologists should recommend or not.
I fell and had a vertebra fracture and I was treated by Kyphoplasty. This procedure stabilized the vertebra, took away pain, and they were able to biopsy the inside of the vertebra for PC (none was found). You can see on You Tube how the procedure is done. It was so easy.
I assume you mean ADT vacations. “Get treatment vacations” isn’t exactly accurate. “Decide to take treatment vacations” would be more accurate. You ultimately decide. Maybe you have the blessing of your doctor, or maybe you don’t. There are critical factors to consider when deciding about a vacation.
Why do you want a vacation? PSA level and how long at that level? How many mets and where are they? How long have you been on ADT? How severe are the ADT side effects? What does your doctor say? Do they think it’s advisable? Do you feel to potential benefits of a vacation are worth the risk of a vacation?
There are many other factors to consider. I ultimately decided to take vacations - four of them, though my latest vacation will be my last. See my profile for details.
I would assume it's based on many factors:1. Status of current treatment.
2. Original diagnosis.ie minimal vs wide spread disease.
3. SEs on treatment.
There are probably more, to me these are the criteria I would be working with.
If I was dx'd with wide spread Mets I probably wouldn't consider a treatment break.
I'll speak to your first question. I am currently off all meds for 21 months now. There is a clinical trial testing this. classic.clinicaltrials.gov/... I went 4.5 years on lupron and Zytiga and always was at <0.01. It is definitely scary being off the meds that made me undetectable. But my drug induced side effects are almost all gone. I'm getting into the best shape of my life-for a 70 year old. I am hoping that we will find that those guys who responded well to hormone therapy can safely stop treatment for a long time. It is a very personal decision and may not be for everyone. If I have to go back on treatment I think I am better prepared physically and mentally to handle that challenge. And your questions are not silly at all.
Had all your Mets disappeared? Or just consistently low PSA?
Another reason for why some patients with metastatic prostate cancer get triplet therapy and others get doublet therapy is the question of new therapy adoption.
My MO is featured in a video promoting triplet therapy. And there is frustration that more institutions have not adopted triplet therapy, based on outstanding and very large clinical trials. When new evidence is developed it takes a while for new practices based on that evidence to be adopted. (This process is characterized by "knowledge diffusion theory".)
These practices will likely be started in teaching hospitals and then will spread to more distant locations. Obviously there will be up-to-date champions in some distant locations which will adopt new practices right away - and others will stick to standard of care.
There's also the question of the definition of standard of care and whether or not insurance organizations are willing to pay for new therapies. And there's a whole gray area where new therapies are funded under compassionate Care programs - in which case you need a medical oncologist champion.
And what we learn from this is that it's worthwhile for an individual with newly diagnosed metastatic prostate cancer to do a lot of research, the better to advocate for a better therapy than might be offered in an institution that is a little behind the curve.
Triplet therapy is in the NCCN guidelines (from Dr. Google):
NCCN Clinical Practice Guidelines in Oncology: 2023 ...
The ASCO Post
ascopost.com › issues › may-25-2023 › nccn-cl...
May 25, 2023 — Category 1 evidence also supports triplet therapy with androgen-deprivation therapy plus docetaxel and either abiraterone or darolutamide.
Great references Derf. However not everybody adopts the guidelines instantly.
Very true! I've suspected it may vary with the deals each clinic negotiated with insurance carriers and Medicare. Varies from clinic to clinic.
As you rightly say, there are deciding criteria:
1) prostatecancer.news/2023/04...
2) Triplet is now the SOC for men newly diagnosed with distant metastases. It was only proved in 2021, so many men on here would have been treated before its benefits were known.
It wasn't yet standard of care in Canada when I was diagnosed and onboarded for triplet therapy in spring of 2022. It's not yet clear that it is universally and practically standard of care yet everywhere in Canada.
There is one protocol for ADT that vacates (vacation) administration of the therapy before the cancer develops resistance to the therapy. Often the protocol "floods" the patient with more testosterone than the cancer can handle for a short time. Then, it's back on the deprivation protocol.
It is called "Intermittent Androgen Deprivation Therapy" and (as I understand it) there are some prostate cancers on which it is effective and some not so much.
i don’t know really but after my 40 radiation treatments my doctor put me on eligaurd for 6 months then took me off it. my psa was 0 but then went to 8 in 3 months. then i was switched to the head doctor and he messed around starting my treatments so 3 months later my psa was 1200. im now on relugolix and nubeqa with docatale. my psa is now 3.
but now he is suggesting chemotherapy for 4 rounds. but he hasn’t really given me a good answer yet on why.
Chemo (docetaxel) with an ADT (relugolix) + Nubeqa would be the "triplet therapy" standard of care that TA was talking about. The only thing I find puzzling is that he wants only 4 rounds of chemo administered, as the SOC usually calls for 6.
Hey Tommy,
In my opinion SOC appears to be in the eye of the beholder. I was diagnosed in 2021 with PCa and a met in the local lymph only. PSA at 1429. Gleason 8 (4+4). I was immediately put on Firmagon for one month (to reduce T flair) and then onto Eligard. Within 2 months of this Eligard only treatment my PSA was 2.1 and soon dropped to .04 where it has remained for over 2.5 years.
During this time over the course of 4 weeks of Cancer Center appointments I was seen by three different 'Oncologists'. These oncologists were what I refer to as roaming doctors filling vacancy needs. Not sure of their proper designation. Remember that this was all within 4 weeks. They all had different recommendations:
1. Oncologist #1 wanted me to continue ADT and to introduce chemotherapy. Due to personal friend experiences with chemo I declined this treatment. This was not taken well by this oncologist. He appeared to take my decision as a personal insult.
2. Oncologist #2 (two weeks later) advocated continuation of ADT and addition of abiraterone (Zytiga). By the time this medication arrived, along with a substantial bill, I had done my research, including side effects, and decided to NOT take this particular medication either.
3. On my third appt. at the cancer center I was seen by a third oncologist, all within 4 weeks of each other, This oncologist completely agreed with my thinking and reasoning of doing the ADT treatment only and keeping all others in my back pocket to utilize only if and when needed. This has remained my course of treatment (Eligard only) through today. Other treatments are being continually researched as I become aware of my different options. I visit this forum almost daily.
So, within 4 weeks I was seen by 3 different Oncologists at the same Cancer Center who all had very different views of what SOC included, or didn't. I presume they all had the same typical oncology training and were controlled by the same company insurance restrictions regarding SOC implementation.
Please note that this is only my personal experience and is only to add to the conversation of what may be silly questions, or not, and how they may relate to 'your' decision of a course of treatment. I do NOT advocate that anyone follow my course of treatment, but please understand that you have choices, good or not good for your own personal situation. Read, read, read and try to become your own expert as much as feasible and do not be afraid to be your own advocate with 'silly questions'. There is nobody else standing in your shoes, except your significant other or caregiver.
Good luck and may peace of mind be with you.
Charlie
You're right. I got 6 opinions from 2018 to 2020 and docs were all over the map. Very confusing.
IMHO as always. 1) My oncologist suggested a half vacation after 3+ years of Erleada + Lupron and excellent results (no tumors on scans for two consecutive years). I skipped my 10/31 Lupron injection and so far, I feel a little better, I think, waiting on blood tests in mid-March. My side effects are not onerous by any means but severe side effects are another reason to go on vacation. However, the cancer will come back so be careful. 2) Depends on the doctor. Tall Allen will probably respond with data on when chemo right away is advised. My urologist wanted to put me on docetaxel right away but my MD Anderson oncologist said no, not until things get worse. Same with the "bone-strengthening" medications: why bother with those until/unless bone density goes down?
Basic decision point is, would you rather have side effects from treatments or cancer? There are plenty of men here who have severe side effects and if you're one of them, make the best choice you can.
I appreciate your response so much! While triplet therapy seems to be SOC so far hubs has been prescribed quarterly Lupron and just started Erleada. He has not been recommended for chemo as yet. He seems so healthy that you don’t know he has anything and is quite active. His MO is at Mayo in Phoenix. We will find out more at his next visit shortly. If this can be managed without chemo would be great. I always felt my father in law’s cancer treatments were almost worse than the cancer and weakened him so much he succumbed. This was over a decade ago and things have certainly changed but I hear you on balancing these factors.
An oncologist told me recently that "20 years ago we tried to kill the patient [along with the cancer]. Today we want to let the patient live." IOW, based on what meds were available, your FIL might have gotten something really toxic on the theory it's going to kill more bad cells than good cells. And sometimes that didn't work out and the patient died.
Today, they use less toxic (but hopefully more effective) meds and believe that a happier patient will have a better outcome.
Everyone is different so your husband will undoubtedly have different results than other people. Find a good oncologist, one that listens to you and answers your questions. This group can be helpful too.
Best of luck!
Prostate Cancer (like many cancers) sounds straight forward. However, it has a multitude of parameters involved. Gleason score, Staging, Localized - Regional - Distant, Genetic mutation and on the list goes. As TA pointed out there are criteria involved. It is important to discuss with your doctors how your particular diagnosis has been evaluated. In helping other men in my area to deal with their diagnosis, myself as others in our group always point out knowing what your "full" diagnosis is. Also if you have other medical conditions. Once they get a handle on this information it is much easier for them to take in the necessary information and understand the whys associated with it.
IMO not silly questions, but rather emblematic of this very challenging disease. Despite all the 'latest' advancements the annual death rate from this disease continues to rise, as do the number of men on ADT . Also IMO, it is correct to say there is no singular standard of care.
How can your questions be silly when if you posed these same questions to ten doctors you'd probably get a half dozen different answers ? When it comes to prostate cancer IMO you can't ask too many questions (silly or otherwise) because at the end of the of the day your most important advocate is going to be you.
There are NO silly questions LOL.
What my experience has been is twofold.
1. Whatever the doctor recommends is ok for some people, but was not for my dad.
My dad had a list of questions and wanted more than one option at nearly all appointments.
2. That some patients "refuse" certain options, so they are given other ones that "fit" what they feel is the best for them.
My father never took a "vacation," but did go on other meds.
He refused chemo, but did do several radiation treatments...that really helped.
I also say regularly here, that my dad lived a very vital life up til his last week...and was on medical marijuana gummies for pain, nausea, and to increase his appetite for nearly 5 years.
He would not take any conventional pain meds.
He took a THC/CBD/CBN combo that helped him, with no side effects - and he never felt high.
He took them several times daily, and told me to "keep spreading the word" that you don't have to do everything the doctor tells you.
The doctors kept trying to push pain meds - but he did GREAT without them, and with the gummies.
Prayer's of strength,
Dawn
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