First diagnosis includes cancer in bones.

[Larryfanman]

What is the longest someone you know has lived when the initial, very first diagnosis of prostate cancer already showed cancer in the bones and lymph nodes?

[ctarleton]

I know a man who is a 12 year survivor after such an initial diagnosis. He got good long runs on a number of treatment modalities over the years, compared to other individuals on similar treatments/trials at the time.

I am a 4 1/2 year survivor, so far, after an initial diagnosis at age 65 with very many bone mets and lymph nodes, and an initial PSA of 5,006.

Charles

[gusgold]

treatment probably will be Lupron/Zytiga...the key to watch for will be time to failure...6 months or less is a real bad prognostic sign

[Dan59]

I am 12 years out from stage 4 Gleason 10, bpsa 148, widespread mets to bones and lymph.

[Larryfanman in reply to Dan59]

VERY GOOD 👍

[Litlerny]

I don’t know the record for the longest time of surviving an initial Stage 4/bone mets Dx, but I hope it’s a long, long time like a few of the members (e.g. Dan59) have noted in their replies, because my initial dx 3 years ago was Stage 4 oligometastic. I’m still hormone sensitive, and my one bone met has ceased to light up the scans. I’m an optimist. Given all the new drugs and treatment protocols in the past 5 years, a durable long-term remission is very possible. We are all different, as is the aggressiveness and course of our cancers, but with grace from God and great medical care we can all hope to be around a long, long time. I’ll cite my bad joke... “When my time comes, I want to go peacefully in my sleep like my grandfather did...not screaming and crying like the passengers in his car.”

[Larryfanman in reply to Litlerny]

Thank you for replying —

You said you was 0LIGOMETASTATAC —May I ask- when you got diagnosed -where had the cancer spread ? — and what was your Gleason score ? - how is your PSA numbers ? Did they come down pretty quick ?

I just got diagnosed about 3 1/2 months ago stage four with a Gleason score of 9

they have me on Lupron shots plus chemo I have taken 4 chemo shots so far

I’m thinking I might be 0LIGOMETTASTATAC

But not sure — at diagnosis I had 2 bone spots on spine— and a few lip notes in front —

I got my PSA Count 4 times

Diagnosis my PSA was 28

First time we checked it after Lupron was .88

Second time we checked it was. .48

Third time we checked it it was. .23

This past Wednesday I took my fourth chemo shot And my PSA was .17

[Litlerny]

Hi, Larry,

All of that is very good news! You are definitely on the right track, and your PSA is headed in the right direction.

Here’s my story (and I’m sticking to it 😎)...I was diagnosed with PCa in June, 2015. My PSA was only 4.65 at that time, but I had palpable prostate tumors on both sides via DRE by both my family doc and the urologist he referred me to. I had a biopsy done in June, 2015. Gleason was 4+3=7. Without digging stuff out to confirm my memory, I think they found some cancer cells in all 12 cores. CT scan showed one hot spot, confirmed by PET scan, of one tumor on the right inferior pubic ramus (bottom of the pelvic bone). I started going to the Mayo Clinic In Jacksonville, FL at the end of June, 2015. I was started on Lupron every 6 months + daily bicalutamide on 06/29/15. I had a very good initial response to the ADT, which has continued to this day. My PSA went down almost immediately, and very rapidly. It was undetectable ( less than 0.1) within a couple of months and (thank God) has remained undetectable since then. My testosterone has stayed at around 7-8, which in some cultures qualifies me for the title of “eunuch.”

If you only have 3 metastatic bone tumors, you are still classified as oligometastatic. You are very fortunate (if that word can ever be used in relation to prostate cancer) in that you are able to get chemo right up front. From all I have read and heard, that has a significant advantage in killing off circulating tumor cells while there are still relatively few of them and they haven’t had time to mutate, and helping the Lupron and bicalutamide work for a longer period, which makes sense because the tumor burden isn’t as great in the early period as it is later, and the cancer cells haven’t had time to mutate into a castrate resistant form.

At the time I was diagnosed, the results of the Stampede clinical trial still didn’t allow for FDA approval (and therefore Medicare and Blue Cross coverage) of docetaxel for oligometastatic hormone sensitive patients. Apparently, their logic at that time was that there was not enough evidence to support that early chemo for oligometastatic guys provided any significant results in terms of overall or progression free survival. However, that may be because none of those guys had died by the time they posted the trial results, which would seem to me to indicate that it is working. But I’m not a doctor or cancer researcher so what do I know? They have since eased off on that philosophy, which has resulted in FDA approval (and insurance coverage of early docetaxel) for us oligometastatic patients. Their new philosophy seems to be that there is enough of an adventage, weighed against the side effects of chemo, to make it worthwhile. Same with early Zytiga. Seems like a no-brainer to me.

I hope that you continue with your great response to your Lupron and chemo for a long, long time.

Mark

[Larryfanman in reply to Litlerny]

THANK YOU

With the limph nodes & Gleason 9—- do you still think mine might be malgometastasize

[Litlerny in reply to Larryfanman]

Yes. Definitely. Oligometastatic refers only to the number of bone lesions (3 or fewer), and the presence or absence of visceral metastasis (e.g. spread to lungs, liver, etc.). 😎

[Larryfanman in reply to Litlerny]

Thanks again – – LARRY

[Dan59 in reply to Larryfanman]

All good advice here Larry, Ogliometastatic has a much prognosis, we are all here pulling for you!

[jdm3 in reply to Litlerny]

I just had my three-month follow up with my MO at Dana Farber. I asked about early chemo and being more aggressive and he said there does not appear to be any advantage to using chemo for low-volume oligometastatic disease. It is definitely recommended for high-volume, widespread metastatic and shows goes good results with that.

Ditto for Zytiga. He said it might be considered more "aggressive," but the possible side effects and risk/benefit does not seem worth it yet as the overall survival data are still too sparse to draw any statistically significant conclusions.

I'm all for aggressive treatment and pushed for this in the visit yesterday. Nevertheless, I ultimately have to defer to my MO. Oligometastatic patients do not fit the general profile of LATITUDE and STAMPEDE. Even though it may be reasonable to extrapolate, there are few data supporting use of early Zytiga or Docetaxel for oligometastatic guys like us. I am responding well to Lupron and Casodex so instead of changing anything, he just wants to do 18 months of ADT and then watch the numbers.

So, for now, another shot in the butt and a little white pill every morning... at least for another three months and maybe we can change it up then if there are better data. I can't help but feel I could be doing more, but I'm not sure what that is yet, so will continue to research, hope there are new and more conclusive studies sooner than later we can use to inform better treatments, and learn from my fellow warriors in the trenches here.

All the best,

Josh

P.S. It may be of interest to some that the MO said some data suggest Metformin may interfere with the efficacy of chemo. He said he was not opposed to Metformin though he does not prescribe it for his patients. He does suggest they stop Metformin if doing chemo.

[Litlerny in reply to jdm3]

Thanks for your insights, Josh. Much appreciated. Different cancer center, different doctor, different philosophy of treatment. This is exactly what makes our treatment decisions so confusing and difficult. It’s not a so much a lack of evidence as it is an over abundance of expert opinions, often in disagreement with each other, as to how to interpret the evidence, and ahow and when to use it in the treatment protocols for their patients.

Unfortunately for us as patients, we rely on their expertise and knowledge to guide us in making our treatment decisions. In spite of the conflict concerning early addition of docetaxel to ADT, I’m still glad I got the chemo behind me early rather than waiting for my disease to advance to the point where chemo has a much larger cancer burden to deal with, or (worse yet) wait until I am castrate resistant, and it is more difficult to have a positive outcome. I also have taken Metformin for Type 2 diabetes prior to, during, and following chemo, so the MO’s suggestion that it might reduce the efficacy of the chemo concerns me. I would be interested in seeing the data showing that Metformin interferes with the efficacy of docetaxel. Unfortunately, it’s already a done deal for me, so I can only hope that the chemo still helps kill ctc’s and extends the effective lifespan of the ADT. However, resolution of this issue may help one of our other members who is considering chemo and is on Metformin.

Only time will tell. At best, our treatment decisions are to some extent a crap shoot, and we’re all lab mice. We all tend to rely on the opinions of our MO’s to guide us in ou treatment decisions, and obviously they don’t always agree with each other. Sadly, it is our lives that are at stake.

As you alluded to, maybe our fellow HUMC brothers have found research that supports one treatment protocol over another for oligometastatic low volume PCa. Meanwhile,

every day is truly a gift. 😎

Best wishes to you on your path of treatment, Josh. I hope we are both in here to share information and our thoughts and concerns for many years to come.

Mark

[Larryfanman in reply to Litlerny]

Hello

This is LARRY — I got diagnosed with 2 bone Mets — and three or four lymph nodes involvement

The doc started me on Lupron — then two weeks later I started taking chemo ( six treatments three weeks apart )

PSA at diagnosis was 28

I have now taken 4 rounds of chemo and my PSA is down to .17 — Plus I have high blood sugar and take metforman every day

So in my case – it looks like the medforman is not hurting my chemo treatment

This is a good thing 👍

[jdm3 in reply to Litlerny]

I agree completely. What to use when, how much, how long, what sequence, how many layers of treatment for complementary benefit, intermittent vs continuous, etc...??? There is such an abundance of data it is difficult to parse through it all. My MO is one of the top guys at one of the centers of excellence. I know smart when I see it, and he's smart. That does not mean his approach is any better than someone else, but I won't second guess him too much. Okay, maybe a little :-), but I'm certainly not qualified to debate him when it comes to this stuff. It is difficult for me to submit and trust, but for now, I am putting my health in his hands.

Yet... that leaves me feeling like I am not doing as much as I could. I would take the chemo or Zytiga early if offered. Even if the side effects are worse than the current ADT. It just makes intuitive sense to attack early, but he tells me the data don't support that. Perhaps, in part, because there are not enough data yet, but still not recommended for me.

For now, my met seems to be resolving, my PSA is undetectable, and my T is 6 so I am going to ride the ADT train for another three months, keep learning from you guys, and perhaps get another consult in the meantime.

Enjoy the day.

Josh

P.S. See my comment below to Dan59 on Metformin

[Dan59 in reply to jdm3]

This is the firsttimeI have heard of possible problem taking metformin with chemo, which is what I do. I wonder if anyone has any other info on this topic.

[jdm3 in reply to Dan59]

First time I heard it too. I did not mean to rock the boat with Metformin.... just passing along information that I heard. My MO is not opposed to Metformin, just said data are beginning to suggest it may decrease the effectiveness of chemo. This does not mean chemo will not be effective and there are other adjuvants people take that can make them more chemo sensitive and thereby nullify an adverse effect, if any from Metformin.

This is one falls into the category of "suggestive", not "indicative" or "conclusive". There are so many data coming out of these studies that some other MO might say Metformin is good with chemo. I think we all look for meaningful patterns even though the data might be meaningless.

[Litlerny in reply to jdm3]

Good morning Josh,

Thanks for the clarification and for sharing the information you obtained. Sometimes rocking the boat is a good thing. 😎 Have a great day!

Mark

[Dan59 in reply to jdm3]

Thank You, For me I am on metformin and just finished up my 18th chemo,Thanks for the explanation.

[Hidden]

May 8, 2004, DX'd with mets to L2 & T3 of my spine. So I am starting my 14th year.

Gourd Dancer

[Litlerny in reply to Hidden]

Glad to hear you have done so well! Have a great day!!