New to the Pca community, Stage 4 with Mets

[Arnie1970]

Good evening, my name is Arnold, I live in Pretoria, South Africa.

I have a beautiful supportive wife, two fantastic daughters, a Granddaughter( Born in Febr 2019), and a Grandson( Born in April 2019), I am Self Employed, have always been active( Running, cycling, soccer, gym),and until March of this year thought that I was the healthiest I had been in years. Had some problem urinating, went to my internist December 2018,PSA was 22,and I had no idea that this was high. He gave me some anti-biotics, and told me to see an Urologist in January 2019. The urologist did a DRE, checked my PSA again( PSA 44) and gave me some more anti-biotics, and Flomax.I had a soccer trip planned with my brother,( Barcelona, Lisbon, London, Manchester) and asked him if I should cancel this. He told me I could go, and we could do a biopsy the Tuesday of my return. Had the biopsy, got send for a bone scan two days later, and a MRI the day after that. We met with the urologist the Thursday after that. He sat behind his desk, told us I had advanced prostate cancer, Met in my right hipbone,some Lymph nodes, and a possible met in my spine,PSA of 52,1 to 5 years to live, and I should see a Oncologist, and a Radiologist. Five minutes later we were standing in the parking lot, and our perfect life had just been torn apart completely. I got my first Suprafact injection that same afternoon from the Radiologist.( Told me he could keep me going for 5 to 10 years) Oncologist put me on Doxetacel with Prednisone, six rounds every three weeks, finished that on my Birthday( 11th of July) and my PSA is now 0.4.

We will meet with my new Urologist( Told the other he is an idiot) on Wednesday, and the Oncologist and Radiologist on the 8th of August to talk about further treatment options. After following the forum since March, I have learned that the people on here are more knowledgable than most doctors, and some advise would be really appreciated. We(My wife and I) are thinking about EBRT to the Bone Mets, involved lymph node removal, and IBRT to the prostate, with possibly Brachy Boost included.

Stay positive, enjoy life, and fight this bitch with all I have got!

[Fairwind]

I know you don't want to hear this, but at this point ADT, (Lupron +Zytiga) Would be your most effective treatment, push your survival time out as far as possible...The spot radiation might buy some more time..Who knows, maybe tomorrow they will find the CURE. Best of luck to you..

[CantChoose in reply to Fairwind]

Survival curve for Zytiga vs. docetaxel is virtually identical per our MO.

[NPfisherman in reply to CantChoose]

The question is..."What does the survival curve for Docetaxol + Abiraterone look like??" I do wonder if that will become the new SOC??

Don Pescado

[CantChoose in reply to NPfisherman]

I thought I had read they found no advantage to doubling up (and significant toxicity) , but I could be wrong. Still have the option to move on to the other when the first choice fails.

[NPfisherman in reply to CantChoose]

I have seen no studies where Docetaxol was given first, followed quickly by abiraterone in MHSPC. I found a study with them given together in MCRPC:

ncbi.nlm.nih.gov/pubmed/268...

That is what I thought might be the new standard--docetaxol first, followed quickly by abiraterone... It all may be a moot issue with the way the science is going. More drugs coming that do not focus on AR are in the mix. Let the Science roll !!!

Don Pescado

[CantChoose in reply to NPfisherman]

Here's the comparison you may be looking for:

ascopubs.org/doi/abs/10.120...

The concurrent use of docetaxel with Zytiga appears to still be in Phase 2 trial, reporting out in October:

clinicaltrials.gov/ct2/show...

[NPfisherman in reply to CantChoose]

Again, in MCRPC...In MHSPC, no studies I found results for comparing Docetaxol followed by abiraterone vs Docetaxol or Abiraterone...thanks for replying...it all may be a moot issue if ARV-110 or some of the many other drugs in development come into play--BRD4 inhibitors, macrophage stimulators, CAR-T breakthroughs, and whether they will put AC-225 or Lu-177 to Fibrinogen Activation Protein which would make treatment available while one has an "undetectable" PSA...Dylan was right....the times they are a changin'...

Don Pescado

[nobaday in reply to NPfisherman]

In the Phase III PEACE I trial arm B gives Zytiga plus Docetaxel plus ADT concurrently in hormone sensitive patients. Started in 2013, should reporting now in 2019!!

[NPfisherman in reply to nobaday]

Found it--this trial:

clinicaltrials.gov/ct2/show...

Compares AA, docetaxol, local radiation, and ADT in various combos and bone vs nodal vs visceral metastasis.....There will be some info here....reporting soon....Thanks Nobaday....

Don Pescado

[Schwah in reply to NPfisherman]

I’m a study of one. Hormone sensitive and I did chemo and adt first then quickly added Zytega prednisone. Also did SBRT to my three mets and threw in Zometa with Celebrex. My theory and that of my MO was if A + B (chemo and adt) has proven Better than A or B alone and B + C (adt plus Zytega) has proven Better than B or C alone, then A+ B + C is logically the best. No proof yet but my MO was doing early Zytega with ADT long before the studies showed it to improve survival 40%. So far so good at .01 and in a “vacation” after 21 months of this. Time will tell if I made a mistake.

Schwah

[dougnola in reply to Schwah]

This is what my oncologist did to me too. Forums like this will let us compare notes as studies and peer review lit continue to move further along. I’m 31 months in so far, fyi

[NPfisherman in reply to dougnola]

31 months of vacation or treatment?? Please clarify....Thanks

Don Pescado

[dougnola in reply to NPfisherman]

Ah. Hehe. Treatment. Radiation and casodex first 6 weeks. Taxotere and carboplatin (with casodex) months 2-7. Then zytiga, prednisone, and Eligard months 7 until present. They nailed me and I’m grateful. Being ND psa and testosterone the past 13 months is my vacation! Staying the course until further notice. :). Does that make sense, Don. My doc is Sartor in New Orleans, btw.

[NPfisherman in reply to dougnola]

Sartor is a heavy hitter....You are doing great...let it keep rolling....I have a friend who has been on a 20 month vacation and doing well....that's why my confusion....You are in great hands...congratulations....

Fish

[NPfisherman in reply to Schwah]

No mistake.... 0.01 is great.... hope you discussed dutasteride with your MO.... Best of luck, Schwah...

Fish

[Arnie1970 in reply to Fairwind]

My Oncologist tells me I am Oligo metastatic, and seems to think that we can still beat this. Wishful thinking?

[Schwah in reply to Arnie1970]

Yes. See my post above.

[Tall_Allen]

With multiple bone mets, treatment of the prostate will only give you side effects. I suggest you focus on systemic treatments instead. In South Africa, you can perhaps get Ac-225-PSMA-617, which has had good results so far. Contact: contact: Mike Sathekge, University of Pretoria E-mail: [e-mail]

pcnrv.blogspot.com/2018/01/...

[Arnie1970 in reply to Tall_Allen]

I have send my medical details to the University of PRETORIA, and am waiting for their reply. Would AC 225 not be something for later?

[Tall_Allen in reply to Arnie1970]

In general, therapies extend life more and have fewer side effects if used earlier rather than later.

[NPfisherman]

Welcome to the forum no one wanted to join but we are glad that it is here. I like the brachy boost idea, but you may wish to consider SBRT for the bone met as opposed to EBRT. See below:

ro-journal.biomedcentral.co...

Everyone's course with APC is different, but the fact that your PSA is 0.4 is great as of July 11th. The STAMPEDE trial proved the value of early abiraterone acetate and since you finished docetaxol, I would consider adding that to the treatment regimen. Also, monitor your T level as getting below castrate level is important and abiraterone will help with that issue.

Best of luck....

Don Pescado

[Arnie1970 in reply to NPfisherman]

Thanks for that, will change that to SBRT when I see the specialist. Would you see any benefit in removing the prostate?

[NPfisherman in reply to Arnie1970]

There is no benefit in removing the prostate at this point per studies, but I subscribe to the "Take out the Mother Ship" philosophy, so I would do brachy boost to deal with the prostate and lymph nodes within the pelvic area--add abiraterone and Prednisone---wait a bit---then do SBRT to the bone mets, etc outside the brachy boost zone--that's what I call--"hitting it hard", mate...could drive you to "undetectable" and hold you there for some time...No one knows for sure, but that would be my choice....all IMHO...ask your MO and RO about this strategy...Best of luck...keep us posted...

Don Pescado

[Arnie1970 in reply to NPfisherman]

Will do. Thanks for the advice.

[j-o-h-n in reply to NPfisherman]

Correction: Motherxxxxing ship....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/30/2019 7:32 PM DST

[NPfisherman in reply to j-o-h-n]

Tear the roof off the mother, tear the roof off the mother sucker--George Clinton and Parliament Funkadelic.... indeed the MotherF ship...and now, we're on the hell ship USS APC... God help all of us poor crew men....and a double scoop of chocolate chip ice cream, please....

Fish

[GP24]

You mentioned two bone mets, this is low volume metastatic. According to the latest NCCN prostate cancer guidelines, radiation of the prostate will extend survival:

Your lymph node mets are not relevant for this.

As already mentioned you can consult Prof. Sathekge at the University of PRETORIA and see if he can do something for you. Call his nuclear medicine department directly to make an appointment.

healthunlocked.com/api/redi...

[gleason9guy]

Welcome. As many of those at the table here will tell you, there is hope beyond statistics. Never give up the fight.

[Arnie1970 in reply to gleason9guy]

You are having a really rough ride, and are still this positive. Great to read this, and really encouraged by your attitude.

[bellyhappy58]

Hi Arnie, I was diagnosed in Nov 2018...PSA 126, Gleason 7,multiple Mets in backbone, hip, and lymph nodes.... started immediately on Zytiga+prednisone and ADT + Zometa...since July PSA 0.41 and Mets are improving in all area. Oncologist had suggested I looked at the Stampede Study,,,and I have decided to move forward to follow the protocol of treatment ie docetaxel + ADT..6 cycles ,three weeks apart. Will start my docetaxel in mid Aug.We have a fight on our hands. We will prevail. God bless

[Arnie1970 in reply to bellyhappy58]

Bellyhappy, is what I was was in March. A healthy 115kg( I am 6.4").After diagnosis in March we started a vegetarian diet( Very little carbohydrates) with some Fish, and every now and then some chicken. No alcohol during chemo, and two days fasting before every chemo treatment. Weight is down to 100kg. No more Bellyhappy. My Oncologist also follows Stampede, will see what the next stage is.

[Litlerny]

Hi Arnie,

Welcome to the monkey house. 🐒 Pretty much all of us in here are Stage 4. As you can see from the replies to your post there is no lack of treatment options, individually and in combination. Although we have the same cancer, We are individuals. There is no one size fits all treatment plan, but there are some standard “starters” like Lupron, bicalutamide, and either chemo with docetaxel or abiraterone (Zytiga) + prednisone, either of those has been found to be equally effective. It seems there is a trend toward early SBRT spot “zapping” of bone tumors for oligometastatic patients.

Glad you ignored the prognosis of your original urologist. You have a long life ahead of you. Just hook up with a good oncologist and be an active participant in your treatment plan. You’re off to a good start to keep the PCa at bay for many years. Best wishes to you! 😎

[Arnie1970 in reply to Litlerny]

Hi Litlerny, Just read your post, and you are doing amazingly with your treatment plan. I trust that mine will work out just as well, whatever the decision about my treatment forward will be.

[larry_dammit]

Sorry to hear the monster has another man in it’s clutches. You May find that the chemo will take care of the lymph node, mine did, was told that since the cancer had left the prostate there was no use of removing it. At this time I am on Xtandi daily and a eligard and Xgeva shot monthly with my blood tests. 36 month August the 6th. PSA <0.05. Keep up the fight

[Arnie1970 in reply to larry_dammit]

I had a PET scan after the third chemo. At that stage the Lymph node had shrunk, but was still visible. I assume that the first thing that will be done before any other treatment is either another PET scan or a Pelvic MRI. Hope that like yourself the the chemo took care of it.

[monte1111 in reply to Arnie1970]

I'm pretty much like larry_dammit. Chemo took care of lymph nodes. No scan during chemo, after 8 cycles were done. Extensive bone mets. Now "stable, no new mets". Xtandi, Xgeva, Lupron shot every 6 months. 29 months out (since diagnosis). One month until original expiration date. Psa at 0.1 for a long time now. Best of luck to you.

[j-o-h-n in reply to monte1111]

expiration date? NFW you'll be around for many many years just to break my tiny marbles that used to be balls....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/30/2019 7:36 PM DST

[Survivor1965]

Just curious, I did cryoablasion on my spine/rib mets at Mayo 3 years ago and it worked well. Wondering why I don’t see more about that being used?

[Arnie1970 in reply to Survivor1965]

I will mention it to the panel of specialist, and hear what they say. It is not something I have seen on the forum before.

[Philly13]

I am sorry to welcome you to the club. It is a big club, unfortunately. This group has been a terrific source of support for me. Practical, Technical and Emotional. My thoughts follow: Find an oncologist that specializes on prostate cancer only. Focus on the reasons for optimism. Avoid Doctors with a bedside manner that includes talking about time limits or median survival. Every one reacts differently and cancer mutations are not homogeneous so no one knows for sure what your path will be. I have a dear friend who was diagnosed with Breast Cancer more than 20 years ago. She had cancerous growth in 27 lymph nodes with a poor prognosis, long before many of the advancements that are part of our treatments in 2019. There is now no evidence of cancerous growth for a long time. Many on this site have similar experiences or know people that have had them. Median survival is a mathematical term that has to do with separating the higher half from the lower half. I keep my focus on outcomes that will allow me to increase the odds of remaining in the higher half. I hear the median number as a statistic that doesn't apply. As long as we make it to tomorrow, there is a better chance of living longer and better since there are advances in treatment coming every day. I saw a gentleman in a restaurant last Saturday night. I ran into his wife about a month ago and she had put him in hospice for end-of-life care. His Doctors or family got him on a clinical and he was enjoying a meal at one of the best restaurants at the South Jersey seashore.

My Grandaughter was born in March of 2019. i meditate every day and devote a part of the time to visualizing her graduating from college.

i like your last line and will incorporate it in my daily practice.

Stay positive, enjoy life, and fight this bitch with all I have got!

Good luck!

[Arnie1970 in reply to Philly13]

Hi Philly, You can use my last line, but I am going to add your meditation part for my granddaughter to my daily practices.

[Shanti1]

Hi Arnie,

The benefit of prostatectomy or other local treatment of the prostate gland is controversial, but here is a meta analysis showing clear benefit for removal, especially in low volume disease: ncbi.nlm.nih.gov/pmc/articl.... For my husband and I, we decide to have it removed despite mets. How many lymph nodes were positive and were they all in the same region? I would consider consulting an oncologist who has experience with SBRT for oligometastatic cancer and experience with lymph node removal. Eugene Kwan presented some cases of lymph node removal/radiation and SBRT in this video resulting in long term remission: youtube.com/watch?v=60P98QL...(Not working as expected?). He would be a good person to consult with. I'm not sure of oncologists in South Africa who would be knowledgeable. Personally, I would not give up on your idea of lymph node removal and SBRT before consulting with someone who uses this approach.

[Shanti1 in reply to Shanti1]

15min-28min are the most relevant.

[j-o-h-n]

Greeting Arnie...You will be around for a very long time to aggravate that beautiful supportive wife and to spoil your two grandchildren. You'll attend your grandchildren's undergraduate as well as their graduate degrees. So tell your daughter to start saving for their college tuition. Keep playing soccer and try to laugh as much as you can. so -

youtube.com/watch?v=2-n83hj...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/30/2019 7:44 PM DST

[timotur]

Arnie, good post, sorry about your diagnosis. If you have any questions about HDR-Brachy + IMRT let me know.