My story - so far

[dorke]

Hello fellow riders

Thought I will update you on my status which might give some hope to newcomers and share data with others in similar positions.

First a recap:

Diagnosed April 2018 PSA 23 Gleason 9 , cancer escaped the capsule so no surgery for me.

PET/CT PSMA found no distant/bone mets but several enlarged pelvic lymph nodes were found.

As such, I was declared with locally advanced cancer high risk (due to the high Gleason).

My doctor insisted on doing genetic tests due to the fact that I'am relatively young (54 at Dx) and that I'm an Ashkenazi jew. And indeed BRCA2 mutation was found which was a bit of a shock knowing that I may pass it to my daughter.

The treatment:

I was immediately put on Casodex for two weeks and then started with Lupron shots, the first one for a month to see how I react to that and from then a three months shot.

I was given the option to choose between chemotherapy and Abiraterone.

I did my homework (which this forum was essential for it) and decided to go with Abiraterone. The side effects of chemotherapy had a big part in my decision to go with Abiraterone.

Reading great posts of many contributors here (I wont mention specific people because I'm afraid to do wrong to someone if I forget- but I guess everyone here knows who are the pillars of knowledge in this forum) I learned about the advantage of Whole pelvic RT.I wont say I had RT because I insisted but my doctor which is an MO didnt bring it up until I mentioned it.

In December 2018 I started 25 sessions of hypofractionated RT to the prostate and pelvic area with 72 Gy to the prostate and 65 Gy to the whole pelvis (hope I'm not wrong with the numbers)

I also take 1700mg daily of Metformin - not Diabetic but found out it may help

PSA levels during treatment:

April 2018 23

June 2018 2.44

August 2018 0.12

December 2018 0.07

April 2019 0.04

June 2019 less than 0.03

September 2019 less than 0.03

Jan 2020 less than 0.03

May 2020 less than 0.03

Current status

In my previous appointment in January this year, my doctor said the Abiraterone will be stopped at two years since medical trials were done for about two years for my diagnosis (STAMPEDE - November 2011 and January 2014).

She also asked me if I would like to continue with ADT which I said yes to fulfill 36 months.

In preparation for an appointment which I had today , I did a contrast CT about 10 days ago.No distant mets , no enlarged lymph nodes, signs of radiation on the prostate, signs of Osteopenia caused by ADT treatment.

Blood tests also showed hypothyroidism (under active thyroid) , completely new for me. Doctor said it might be related to Abiraterone.

She told me that Steroids (prednisone) were found to be a risk factor for COVID-19 and at one point there were thoughts to stop Abiraterone treatment for everyone something that eventually didn't happen.

In the appointment I had today , she decided to take me off of all medications . As mentioned above, stopping Abiraterone was planned but I thought I would continue with Lupron.

She said that there were some trials which found out no advantage to 36 months of ADT over 18 months for my diagnosis and since ADT has its toll (osteopenia on the rise..) she decided to take me off after 24 months.

Follow up

Close monitoring of PSA and its rate of change.

PSA is expected to rise.Above 2 it will trigger deeper digging and starting treatment again.

So here I am , two years after been diagnosed, more optimistic than I was.

Suggestions

- Educate yourself as much as possible

- Don't be intimidated to raise issues to your doctors but first educate yourself

- If you can, do a genetic test. Its hard to know you have a mutation but it may be helpful for you (see rucaparib) and your family

- Live day by day

- Love everyday

- If you don't have one already, get a dog

Wish you all a healthy life

[Timfc]

What a nice, informative, balanced, and uplifting post! It is good to have your healthy spirit in this group.

Thank you!

[Shooter1 in reply to Timfc]

Quite informative for those who can't find Dr to operate if you have spread , mine had . I'm 70 and don't want another dog. My wife and I are able to play with Jet ( our daughter's dog) when we visit after church. Starting my third year without prostate, 2nd without gonads and doing well.. On Xtandi for cancer and gabapentin for chemo caused neuropathy.

[Bodysculpture in reply to Shooter1]

That's a good result

And very encouraging

I dont think it would be fare

Having a dog with my moid swings as they are

Some days I'm great others not so good

Still in treatment

Chemo though necessary is draining

[Tall_Allen]

It looks good! I would quibble that the trial of 18 months vs 36 months of ADT she is talking about (Nabid) specifically excluded men like you who had positive lymph nodes. In the STAMPEDE analysis of men with N1, all men got 3 years of ADT with their radiation.

pcnrv.blogspot.com/2016/08/...

There was an interesting observational study (Touijer) of men getting salvage radiation after prostatectomy when positive nodes were detected. There was a survival benefit to long-term ADT+SRT. Patients with positive lymph nodes were on ADT much longer.

pcnrv.blogspot.com/2017/12/...

That said, none of those studies included abiraterone with ADT, so it is entirely possible that the stronger ADT requires less time to kill off any remaining cancer. That is a judgment call.

I would also argue against the prednisone given with abiraterone being a risk factor for covid-19. It is only a replacement dose (replacing the cortisol that the Zytiga destroys), and therefore should not impact the virus one way or another. (Prednisone in much larger doses stops prevents immune activation. But prednisone in larger doses is also necessary to prevent the inflammatory organ destruction that covid-19 causes. This is irrelevant for you.) Given recent data suggesting that ADT may be protective of covid-19, I don't think this is a good time to end it, even if you just continue with Lupron.

[dorke in reply to Tall_Allen]

Thanks TA.

I am concerned about stopping ADT.

Its not easy psychologically to be without any treatment.

To put it on her words " ADT is no anti anxiety medicine..."

Anyway,even though I trust my doctor I decided to get a second opinion.

Made an appointment for the beginning of June

[Bodysculpture]

That's uplifting and encouraging

God knows I need it right now

My PSA was 13.5 when diagnosed after 5 chemo sessions it's now 1.6

I have 1 more session and I hope I will be left alone for awhile

Been at the hospital way too much every 3 weeks I get kicked in the bullocks over and over

Praying for a good result

[dorke in reply to Bodysculpture]

I'm glad you found it uplifting.

Chemo is hard but hang in there.

Wish you some peace soon

[Patrick-Turner]

I see you have quite a story with Gleason 9 and inoperable, like mine, back in 2009.

Pas as only 6 at age 62 and I've survived over 10 years.

In 2010 I had 70Grey of standard EBRT to PG but no general RT to whole of pelvic volume which to me seems a bad idea because of effect on so much healthy tissue in so many organs. No spread was found anywhere in 2010 so no reason for anything more than plain old ADT until its effect in slowing Pca stopped. Psa nadir was 0.08, but in 2016, Psa was at 5, and I had 31Grey RT to PG and 45Grey to two lymph nodes found to be positive mets using PsMa Ga68 PET / CT scan, which seems to be the best type of scan for me and I have now had about 6 of them.

I had Cosadex added to ADT which suppressed Pca for 6 months only, then after Psa rose again, I had 8 months on Zytiga added to ADT, and Psa went to 2, then slowly up, so I stopped that and had 5 shots of chemo which made Psa go from 12 to 46 in 5 shots, so I quit chemo, and had Lu177 start in November 2018, and 4th shot was in May 2019. Followup PsMa scan last August showed very good results with no soft tissue mets seen and bone mets healing up. But I had Zytitga added to ADT in April 2019, during LU177, to boost PsMa expression for 4th Lu177 shot. Maybe it did, and last November Psa was 0.32. But now Psa is maybe 5 again, so I will probably have more Lu177. if PsMa scan shows enough PsMa avidity and uptake of Ga68 is high enough. I am not sure what status of what body parts are active with Pca right now, but I see my doc in about 9 days, and ask for PsMa scan, to find out what comes next.

Meanwhile I am symptom free, and am cycling 200km a week, in 3 rides, and at good speed, and I feel very well. The only bad side effects from 10 years of treatments are "dull feet" action, ie, neuropathy in lower legs from Chemo, which has not stopped me having good athletic ability and good fitness from the cycling. Of course the ADT plus RT to PG area has exterminated all ability for normal sex of any kind but I could not care less because there hasn't been a partner in my life for over 30 years, and there won't ever be one because no woman wants to know a poxed up old man who can't get it up, and besides, all women I am supposed to fall in love and who are near my age are so fragile and full of medical problems and allergic to anything male are all better left alone. l gave up trying to find a partner over 20 years ago. Just pointless. But I feel well, and happy, no matter what happens.

It is good your Psa is 0.03 and holding, but it may start to rise when Zytiga begins to stop working.

I found Zytiga caused a problem with heart rate regulation, and in hot summer weather I had to quit cycling with a group and ride alone very early in mornings, or else HR went all queer. The HR bothers stopped after I stopped taking Zytiga. Its a drug that stops adrenal gland making its small amount of testosterone, but has a wider lot of effects, some unknown, and prednisolone is also not made, so you take pills to replace what adrenal gland does not make.

I've had no side effects with Xtandi, but I think that's stopped working now. It probably helped get Psa low last year, but Psa has risen, so I guess it has stopped working, but a PsMa scan may tell docs what is really going on. There's a point where guess work is used to define Pca status and scans try to end the guess work and define status a whole lot better.

Below, Tall Allen talks about ADT and the add-on drugs killing Pca, but I found mets increased while on ADT + Zytiga, so as far as I know, ADT + Zytiga or +Xtandi or + Cosadex may killa few Pca cells but certainly not enough to ever get remission. Sooner or later, Psa rises with these drugs which just won't work any more.

The "salvation IMRT" I had in 2016 to PG was said to be a sure way to kill all remaining Pca in PG which was not removed. I was first patient in Australia to get such repeat RT to PG, and its efficacy was based on a 2011 article in American Journal of Clinical Medicine written by a Dr Schultz who stated that he had 47 Pca patients go into remission. But I questioned the doc in Melbourne who did this RT for me about truth of Schultz claims, and there was nothing to support it really worked well at all, there was no proper trial done, and Shultz could have treated 300 men and got a good result with 47, but no long term followup was given, and in my case, later PsMa scans showed plenty of Pca activity still in PG, despite the Melbourne doc telling me "this will definitely kill all the Pca in your PG. It darn well did NOT.

The only thing that really killed a lot of my Pca cells was Lu177.

I am not frightened to have a bit more, and research docs at Peter Mac hospital in Melbourne have found a man can have repeat doses of Lu177 if scans indicate it will work, and therefor extend his life by 4 or 5 years, a lot more than the mean time of life extension of only 14 months. At Peter Mac, they have trialled using Lu177 as soon as possible after diagnosis, and really killing Pca cells right from beginning, rather than just suppressing the speed of growth of Pca cells. Lu177was initially used for men with end stage disease, with months to live, but now its an option for primary therapy.

My fight is not yet over, and I don't know my future; its a SNAFU situation.

So what. I'm alive, and classified as healthiest Stage 4 cancer patient at my local hospital. Woo Ha eh!

Best of luck comrade, you are going to need luck,

Patrick Turner.

[HopingForTheBest1]

Am also a BRCA2+ fellow warrior. Have been on Olaparib for over a year, and PSA has been undetectable. Also on Eligard and Xgeva.

[RonnyBaby]

Interesting story - thanks for sharing.

I see some things that I need to consider, based on your observations.

I was a G9 with a PSA over 300, with local spread to some lymph nodes.

That was with an original Dx about 3 years ago. I did ADT for 16 months - stopped before a 2 year threshold where SEs could be permanent.

Primary treatment was radiation - close to your levels, but no chemo for me.

I'm watching and waiting as my 'T' and PSA recovers. Last PSA check was 2 weeks ago at 1.3 while my 'T' is in the lower normal range (about 35 % range on the scale).

I don't know what awaits me, but I get stronger every day and feel like I've survived it well.

Wishing you well on your journey ....

[dorke in reply to RonnyBaby]

I'm glad you are getting stronger after the havoc ADT causes.

Hope I'll follow your path

[RonnyBaby in reply to dorke]

It looks like you've been undetectable for about a year (0.07 - 0.03 is basically null zero).

If you can stay there (as you have) for a consecutive year OR more, that is a good sign.

That fact alone allows one to hope for an ADT vacation or at least some cycling to get back to 'normal' for as long as possible.

QOL is big part of my approach to it all.

[j-o-h-n]

Wish you a healthy life too....I would get a dog but my wife said that the dog house is reserved for me..... Would you tell us what breed of dog you have (who replaced your other sweetheart) and where you are located..... Thank you....

BTW I am not a Ashkenazi Jew, but growing up I was a Shabbos goy....

Good luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/19/2020 6:57 PM DST

[JPnSD]

Thanks for your posting. I got the dog...wish I could get a Dr. that I felt I could trust. I am 9 months post-op RP with stage 4 PCa diagnosis (Gleason 9 PSA, 8.6 at diagnosis and 1 lymph node with microscopic cancer post-op analysis...everything else clean...including seminal v. - i.e. Stage 3 indicator) My 10-week post-op PSA = .01, Jan = .05 and April = .05. I have asked for a Decipher test (genomic) on the tumor sample from RP. My URO is stalling waiting for higher PSA numbers...my MO says no genomic testing until androgen deprivation has been exhausted (not on ADT). I would like genomic information to plan the next step without waiting for high PSA or metastasis...and only then getting biopsy and genomic analysis. Are other people experiencing these types of roadblocks? These are Sharp Reese Stealhy Physicians in San Diego.

[Scoop65]

Casodex was eleven years ago. Only used for a month.

Since then I’ve had provenge, Zytiga, and continuous Eligard type injections. All helped prolong my life. Just started chemotherapy.

[dorke in reply to Scoop65]

You are on Eligard for eleven years?

What was your initial diagnosis ?

[George71]

Have you considered salvage radiation to lymph nodes and prostate bed?

[dorke in reply to George71]

I had radiation to the entire pelvic area to hit the lymph nodes and prostate

[dorke]

In an appointment I had with the geneticist after doing the test he

said I should be "happy" I have more ammo...

For me ,every day I live post Dx is a gift so knowing I have PARP in my belt

doesnt really matters.

What really troubles me is thinking I may have passed it to my daughter.

We (hopefully me too) will know for sure in a few years when she will be 25, that's the age the geneticist said she should be checked