So Far So Good: Hello everyone I just... - Advanced Prostate...

Advanced Prostate Cancer

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So Far So Good

Granica4818 profile image
32 Replies

Hello everyone I just wanted to give an update on my husband's advanced prostate cancer. Please read the bio for the back story. He is now 57 and in March it will be 4 years since diagnosed. The past two years have been uneventful, which is a good thing under these circumstances. December marked two years on the Zytiga and prednisone with a lupron shot every three months. PSA has always come back <o,o1. So we are extremely thankful for these results. Can this combo of meds continue to work for many years? I hope so but what I have read that doesn't seem to be the case. But we will take the wins every month when his PSA comes back <0.01. All his labs continue to come back with no concerns as well. He has some pain from the met on his spine which has been controlled with pain meds. Never really feels great but not terrible either. He keeps suggesting he would like to take a break from the meds since there is no sign of cancer, but my gut says no. What is everyone's opinion about this? He has been taking all thre meds for 25 months now.

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Granica4818
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32 Replies
mrscruffy profile image
mrscruffy

Diagnosed at 54 worked for 8+ years

Granica4818 profile image
Granica4818 in reply tomrscruffy

That is awesome.. If you don't mind me asking ,what is your Gleason score?

mrscruffy profile image
mrscruffy in reply toGranica4818

Have no idea, that was soooooo many years ago. want to say 7 but that is just a guess

j-o-h-n profile image
j-o-h-n

Stay the course.......

Good Luck, Good Health and Good Humor.

j-o-h-n

Roscoaus2000 profile image
Roscoaus2000

my result has been almost identical to your husbands.my weight went up from 83 to 91kg in the first 12 months then stabilised.i started Zytiga in May 2018 and psa stayed <0.0;5. Until May 2024. It then slowly rose to 1 in October 2024. The Mets of May 2017 have been unchanged up to October 2023. At last consult last October my Inc declared Zytiga no longer working and have stopped it. I tapered off orednisiline over 10 days but should have been at least 20 as I hand Vertigo for 30 but am good now. 18 months ago I discovered intermittent fasting and have dropped my weight evenly down to a healthy bmi at 73kg. I have little pain and walk everyday training my young dog. My diet has always been based on fresh food And I am hopeful that my new Lo w carb (dirty keto) will slow down cancer progression which will be measured at end of Feb.

GoBucks profile image
GoBucks

Review this thread from a couple weeks ago. Taking a med vacation is a very personal decision. I mentioned an ongoing clinical trial for great responders who take med vacations. I've been off all meds for 2.5 years now. Of course, everyone's mileage may vary.

healthunlocked.com/advanced...

Lettuce231 profile image
Lettuce231

Hello Granica4818,

Your husband is doing very well, his results after 4 years since diagnosis would be envied by many here. It's good that he still feels okay, not like superman anymore, but doing okay.

Your question about this combo of medication, really can't be answered, because we are all different, and although our cancer comes under the same heading, they too differ, because they are personal to us, " special " like we are 🙂

I've read posts on here from guys that have been using this treatment for many years and it hasn't failed them, that has got to be encouraging. From memory, which is useless, I have been on Lupron since day one, I think this year I will reach 7 years on Zytiga and prednisone. My PSA seems to be bobbling about 0.067, it tends to move around a bit.

I was diagnosed at age 56 years and am now in my 69th year.

I would never, ever, take a break from treatment, this beast was going to kill me, it's locked up, why give it parole ? It makes no sense to me, if I did recover a bit and feel a bit better, while taking a break, I know in the back of my mind that those C cells are returning and I've got to start all over again.

Yes the medication takes it's toll, but in comparison to the option, I'll take the medication.

I hope this helps answer your concerns. stay positive the both of you 👍

Wgly profile image
Wgly in reply toLettuce231

My second opinion from a professor of oncology said my drugs had done their job and couldn't do more, but a vacation would spare me the difficult SE's. She went on to say that (with proper surveillance), she has never seen a vacation setback that could not be treated as if there was no vacation. Stage 4, Gleason9, Oligometastic, PSA and T unmeasurable. Lupron, Xgeva, Zytiga, Prednisone following Radiation cleanup. Age 84.

Lettuce231 profile image
Lettuce231 in reply toWgly

Hello Wgly,

I get your point, but respectfully I can't agree.

You hear the word remission used very often with cancer, but in the case of cancer, it doesn't mean it's gone.

Question, Cancer cells, do they simply roll over and die, because the drugs " have done their job" and " couldn't do more". My way of thinking is, you can kill as many as you like, but whatever produced them in the first place, will continue to do so.

I agree " proper surveillance " would be absolutely important, but that implies that they are still lingering and will return, for those men who have had a break from the treatment and never had any return symptoms, they have truly, been lucky. I wonder what the odds are on that 🧐

I am pleased for you, that taking a break, is working for you and long may it continue. But it would take a lot to persuade me to dismiss my body guards.

Take care and all the best.

Wgly profile image
Wgly in reply toLettuce231

Couldn't do more in the sense there would be no further significant reduction, and scan showed no active tumors. And if it returns it can be detected early and treatment resumed. Why would anyone not skip the SE's?

Granica4818 profile image
Granica4818 in reply toLettuce231

What was your Gleason score?

Lettuce231 profile image
Lettuce231 in reply toGranica4818

My wife, who's memory is better than mine, thinks it was 9,

Lettuce231 profile image
Lettuce231 in reply toGranica4818

Try not to hang on to, that kind of thing. What's important is the results you have now. Moving forward.

CAMPSOUPS profile image
CAMPSOUPS in reply toLettuce231

I agree with lettuce231 on this. The gleason score is most useful in initial diagnosis it can steer treatment that might range from cureable to systemic control. But gleason is determined from the prostate tumor(s). Once metastasized the gleason score has much less relevance. I'm just trying to politely say don't use that as your key to understanding the whole scope of his PC and how he may or may not be similar to others.

I had a biopsy and gleason 9 but there is apparently some merit to not doing a biopsy on someone like me who walked into the dr's office with PSA 1,621 and widespread mets. Once the mets are present the gleason score has less relevance.

Lettuce231 profile image
Lettuce231 in reply toCAMPSOUPS

Hi Campsoups, you said it much better than I. Thanks 😊.,

Lettuce231 profile image
Lettuce231 in reply toGranica4818

Hi, my wife and I have been going through the massive medical records. I had a gleason 7. Rest easy for a while 👍

lcfcpolo profile image
lcfcpolo

I'm advanced prostate cancer as well, aged 58, like your husband doing well over 4 years in. I've not felt confident enough to take a break from treatment. I'm on Enzalutamide and Lupron every 3 months. I understand why your husband wants a break. Really difficult decision. Good luck.

vintage42 profile image
vintage42

When did the met on the spine appear? Has SBRT radiation been suggested for pain relief?

I was hoping that hormone therapy would prevent mets, but after a year of it, I think I am feeling one in my lower back. An MRI next month will tell.

Granica4818 profile image
Granica4818 in reply tovintage42

His metwas identified within ( months after poectomy. In my opinion I think it was there before his removal. He did have radiation for that spot.

pakb profile image
pakb

My husband has been on that combo for 7 years. You can look in my bio for more details. Gleason 9. He still is doing well. Has never had a PSA much below 1- since diagnosis of PSA >677. But PSA has been steady for years. We look at steady more than the number itself. He's had spot radiation to his spine mets twice now- not for pain but to stop growth. Both successful.

DesertDaisy profile image
DesertDaisy

My husband has been on zytiga/pred for almost 2 years. His cancer returned after a vacation, which I was never in favor of. You can read my bio for more info. He's currently doing well.

AlmostnoHope profile image
AlmostnoHope

Talk to your Docs about a break as it does us all good.

InqPers profile image
InqPers

Hello. Yes, going intermittent is an important personal decision based on a dizzying amount of data. In my case, diagnosed at age 59, I choose to come off therapy after RP, immediate recurrence (1 bone met suspected, one positive pelvic lymph node, Gleason 8), triplet therapy, pelvic IMRT and 24 months of Lupron/Zytiga. PSA went <0.1 and positive lymph node undetectable by 2nd Taxotere treatment and has been that way ever since. Bone met reduced in SUV over next two scans and went undetectable by 3rd scan (about 1+ year after initial treatment).

I elected to take the holiday in the hopes that my treatment may have been curative. Got multiple MO opinions concurring that after 18-24 months of NED that OS risk about the same vs. continuous treatment and if I don't stop the treatment, I would never know, right? I've been off treatment for 1.25 years and so far, so good. It took about a year, but I'm feeling completely normal now, and so thankful.

CAMPSOUPS profile image
CAMPSOUPS in reply toInqPers

May I ask was not your treatment with intent to cure?

Unlike the posters stage 4 with bone mets practically and maybe prior to dx and treatment.

InqPers profile image
InqPers in reply toCAMPSOUPS

Well, yes. I went with maximum intensity with intent to cure. I did have one suspected bone met (lit up on scan, but not able to biopsy), so by definition a cure would be against high odds, but that was the intent.

Granica4818 profile image
Granica4818

Thars so good!!

Hawk56 profile image
Hawk56

Well, let me try and respond to your questions:

" Can this combo of meds continue to work for many years? I hope so but what I have read that doesn't seem to be the case. " This is a heterogenous cancer so there are no absolutes. Like statistics, some will have their ADT + ARI stop working after a brief period, two years or less. Others will go seven years, or more.

One of the questions in coming off, taking a break, vacation, whatever term, is will I recover testosterone sufficient to enjoy the benefits before I wind up going back on treatment? That may be a function of age, pre-treatment testosterone, which agent you are on, how long and potentially how active you are, i.e, exercise which may play a role in how fast and how much T recovers.

My clinical history supports healthunlocked.com/user/Wgly comment - "She went on to say that (with proper surveillance), she has never seen a vacation setback that could not be treated as if there was no vacation..." When I come off treatment, we have labs and consults every three months. We have criteria in place about going back on treatment, three or more consecutive increases spaced three months apart and, or PSA between .5-1.0 which supports statistically great chance of PSMA PET locating the recurrence, thus informing the treatment decision.

My first "vacation" lasted 4+ years, the 2nd, we're at 9 months and counting. While I would say there is no difference in what I do on versus off treatment, sure feel better off.

In my case, no spread to bones or organs so that may be a factor, still, I am high risk, GS 8, GG4, PSADT and PSAV very rapid, 18 months to BCR after surgery... Generally I've seen on the forums where those with bone involvement don't take vacations, but, it's not an absolute either.

Kevin

Clinical History
Granica4818 profile image
Granica4818 in reply toHawk56

Thank you for you input I found it very interesting.

London441 profile image
London441

Congratulations on his doing well-well enough as you say. Yes the drugs don’t work indefinitely, and there is not nearly sufficient data to know if a ‘vacation’ will be successful and for how long.

The tricky part is indeed whether such breaks from testosterone suppression ‘wake up’ dormant cancer, how quickly, which cells etc. Current popular opinion suggests one can always simply go back on the drugs if closely monitored PSA rises. Best that it be very close monitoring indeed.

Of course, the reason for doing it in the first place is to get relief from side effects, and the likelihood of that depends on age, time on ADT and what baseline T was at diagnosis. Unfortunately, sometimes it doesn’t come back at all.

All things to weigh carefully. Another hypothesis is that switching drugs/doses and/or vacations can help keep the disease off balance, so to speak. Many doctors and other experts swear by this one.

The only thing I swear by is plenty of cardiovascular and weight bearing exercise, which is a far greater power than any supplements and other non-traditional treatments combined. It is almost certainly the reason why my time on ADT was relatively uneventful, although ‘relatively’ is the key word there.

What is certain is that regular exercise absolutely makes every part of the ride far more enjoyable, and promotes good health in even more ways than its given credit for, which is saying something. ADT without it is the biggest mistake a man can make.

No easy choices here…Great luck to you both!

Mgtd profile image
Mgtd in reply toLondon441

Support the exercise part. It has worked to give me a better QOL. In addition I found a whole new set of friends.

The real bonus for an old guy is the gym’s eye candy.

Mbnm profile image
Mbnm

I have been on your same treatment for 2 years with psa and testosterone well under control so far…will be age85 next week

My psa was never higher than 10 but have cancerous lymph node near my spine which oncologist is reluctant to radiate

Was this a question before your spine radiation ?

Would like to take treatment vacation but I am chicken!

CAMPSOUPS profile image
CAMPSOUPS

I guess since my dx with mets and G-9 my attitude wasn't/hasn't been treatment will knock this down and then I can go back to a life without treatment.

Its been my hope the treatment I'm on lasts a long time so the few remaining treatments aren't needed for a long time.

I was able to get 14 months of benefit from Zytiga. I was careful not to give myself false hope but I had pipe dreams that maybe I could get 2 years, 5 years out of Zytiga.

Anyhoo, I'm glad hubs is doing well. That's great news enough lol.

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