Introducing myself. Have mostly lurked for a couple of months, but time to formally say I'm here and start asking my own questions.

[Gl448]

Hello all, my name is Dave. I've just updated my profile with all medical info on my case. Hate that I need to be in this particular club, but glad there's such a great resource to learn from in the form of this forum.

I'm stage IVB (cT3b, cN1, cM1b, PSA: 3.8, Grade Group: 4) - no hint of cancer until this diagnosis after a TURP in August.

The ONLY treatment I've had to date for the PCa is an ELIGARD injection, no Casodex or Xtandi, etc. yet.

I've already met with an MO and an RO, but both are waiting for a pelvic bone biopsy before finalizing plans, but the RO's propose treatment is in my profile.

My urologist said this was still treatable but needed to be dealt with quickly.

My MO said that between what treatments she'll give me and the RO will give me, that they could probably ALMOST cure me. LOL. Almost cure...I know that Stage 4 is a life sentence in at least terms of having to monitor for recurrence or return for the rest of my life.

My RO was less optimistic sounding, only saying that if we followed her fairly aggressive treatment plans with radiation that recent studies suggest a few extra years extension of life. RO is a City of Hope doctor.

None of the doctors have given any longevity numbers but all the tools I see, and most Google searches suggest just a 60% chance of making it past 5 years. I'm taking that with a grain of salt because I know that many new treatments are coming, and I've seen many posts from people here saying they're well past that old standard of 5 years best outcome. But I've also seen some sad posts lately of people losing their battle just around 5 year mark.

A couple of questions in this particular post about the actual Stage numbers:

I know T3b means local spread to just the seminal vesicles, but I had cancer cells spreading into the bladder neck...is the bladder neck considered part of the prostate? I understand it to be muscles, which would suggest my cancer is actually T4...or does it have to be an actual organ to be T4?

Other than that, that staging seems like it could only be a worse level if the M1b was an M1c.

I've got other questions that I'll post as separate threads to make them easier to follow and find for other newcomers with similar questions.

[6357axbz]

do u have metastices? Where r they?

[Gl448 in reply to 6357axbz]

Yes I do have metastices. They're listed in my bio, but I have mulitple mets or foci that are suspicious as mets in the pelvis, the sacrum, and several mets in the lumbar spine.

[Tall_Allen]

The Eligard will keep the cancer in check for the time being. You seem like a perfect candidate for the new triplet therapy: a combination of Eligard, Nubeqa and docetaxel. That is first and foremost.

prostatecancer.news/2021/05...

In a few months, you can get radiation to the prostate. But the triplet therapy is your primary treatment.

[Gl448 in reply to Tall_Allen]

Thanks. Is this generally accepted by most MOs? I’m wondering if it’s going to take a lot of effort trying to convince my current doc.

I’ll doctor shop if needed.

I’m in the north San Fernando Valley; you’re LA area too, correct?

Thanks again. I’ll print out that link to take to my visit on 10/13/2022. Pretty frustrated that my bone biopsy, despite being marked urgent, can’t be done before that appointment by Providence.

[Tall_Allen in reply to Gl448]

It's in the current NCCN Physician guidelines and it is FDA-approved.

Strongly recommend Tanya Dorff at City of Hope.

[Gl448 in reply to Tall_Allen]

Thanks again.

My current MO (one consult only) ordered the bone biopsy of the pelvis “to make sure we don’t give you treatment you don’t need.”

I should have asked, but I was sure in my mind she was talking about chemo (docetaxel) and didn’t want to put me through it if by any chance the bone lesions aren’t cancer.

The RO from City of Hope I met with was very confident they’re all cancers…

I’ll look into Dr. Dorff.

[AlvinSD in reply to Gl448]

I’m 52 and was diagnosed in May 2022 with Gleason 9 (4+5). (I had no ductal cell morphology though). I have spread to lymph nodes as well as a 1 cm spot on my right acetabulum. (No other bone Mets and no visceral mets.)

Originally, I was started on Eligard 3 month (Casodex for thé first 30 days, got first Eligard after 10 days of Casodex) and Zytega. After advice from a second opinion at Scripps Clinic La Jolla (as well as the great people here), I pushed for triplet therapy with my MO. (6 rounds of Docetaxel, darolutamide and Eligard)

I just finished round 5 of Docetaxel yesterday and (aside from hair loss and fatigue the week of my infusion), I’ve tolerated it well.

I see the radiation oncologist (UCSD) on Friday for a follow up and to discuss planning for radiation. Originally, he wanted to only do 20-25 IMRT sessions to the prostate. He wanted to see how things went with the chemo / ADT before he decided how to approach the lymph nodes and bone met. (I’ve never had any bone pain and the only symptoms I ever had were BPH since my early 40s and a fluctuating PSA. PSA spiked into the 20s late in 2021.)

If you want to discuss triplet therapy, please send me a DM.

[Gl448 in reply to AlvinSD]

Not sure what my MO has in mind. She wants a biopsy of the biggest bone met in my acetabulum before discussing treatment options beyond the Eligard and possibly something to prevent bone loss. She said bone biopsy to make sure we don’t put you through treatment you don’t need I assumed she was referring to chemo/docetaxel.

I spoke with the nurse yesterday and she mentioned XTANDI. I think I saw an abstract on NIH mentioning XTANDI with Lupron and docetaxal for triple therapy, maybe triple with that combo on her mind.

NUBEQA seems to be the triple ingredient of choice now. I’m going to message the doctor and tell her I’m interested in that instead of XTANDI with ultimate goal of triple if appropriate.

Thanks.

[MJCA]

Hi, don't freak out. I have had this for over 17 years. Started with Stage IV, radiation removed the cancer on my lymph nodes. It is on my skeleton. All I (or anyone) can do is remain informed, be your ombudsman in your care, enjoy life. Don't freak out. We are here for you.

[Gl448 in reply to MJCA]

I’m not freaked out at all. Not happy about it obviously, but panic won’t help. Been dealing with it for two months at this point.

Other than the occasional “why me” I keep the negative away. Frustration over delays in the medical industry are the most negative feelings I’ll express.

This site is a treasure trove of good data and support. I’m pleased to have been directed here by Reddit PCa members

Thanks!

[addicted2cycling in reply to Gl448]

Gl448 wrote --- " .... Other than the occasional “why me” I keep the negative away. Frustration over delays in the medical industry are the most negative feelings I’ll express .... "

👍👍 for your frame of mind.

Water off a Duck's back became my mantra many decades before my diagnosis so the "why me" thought never even entered my mind. WAY TOO MANY CHILDREN and others have far greater difficulties in their lives for me to fret over this pot hole in my life. As I type I am considering what needs to be done once wife and I plus our 82yo neighbor who we forced to come with us (her own son who lives locally didn't even express concern over her safety) return home after evacuating Ian's visit. Our home is damaged - hers not - my recent blood work was not the best so waiting for treatment update - my left leg (fractured tibia) that was hit by a wild hog while bicycling 10 weeks ago TODAY has swollen up worse than ever after having to clear the debris from Ian's passing here in the Orlando house our daughter's friend graciously allowed us to evacuate to since he's not here but at least we have a home to return to.

I can't advise and am saddened that you had to join this club but GLAD you found an outstanding group of individuals who are concerned enough about the well being of others to offer sage advice.

[Gl448 in reply to addicted2cycling]

Great insights in attitude and perspective. Looking at Ian’s devastation on the news right now. It’s insane.

[Zengal79]

Another vote here for Tanya Dorff. We met with her for a second opinion. She takes the time and is one smart cookie. We had to wait around 5 weeks I believe for an appointment in August, so not too bad for someone as well respected as she is.

[Huzzah1]

I pushed hard for all of my testing and was able to see 9 Dr's to put together my team. This year, my first Uro visit was at the end of April, Biopsy in May, bone scan and MRI in June, first week of July was PSMA and I started IMRT in mid June.

[Stoneartist]

I agree with the above - no need to panic. Like me you are symptom-free and I have been on the train for 2.5 years and are still symptom free. For me it doesnt make any sense the "how long do I have" question. When asked I tell folks between 2 and 20 years. But most important I focus on the joys of the moment - theres so much to be thankful for in this world - we all just need to enjoy it while we can.

[RMontana]

GI448; "I know T3b means local spread to just the seminal vesicles, but I had cancer cells spreading into the bladder neck...is the bladder neck considered part of the prostate? I understand it to be muscles, which would suggest my cancer is actually T4...or does it have to be an actual organ to be T4?"

I had bladder neck invasion but my pathology post RP was pT3a. Bladder invasion is not considered 'Organ' invasion and is not T4...this was changed some time back...

Here is a great site you can look at for prediction of PCSM (mortality)...its about a couple of years old so the info is pretty new...use the nomograms to see if it helps you anticipate what is coming any better...there is always, always the possibility that you will NOT progress...keep that in your mind and try not to despair...but I am walking the path you have already travelled so let us know you are doing....TNX

youtu.be/yDT_qWG_3oU(Not working as expected?)

221004 IMG CAPRA PCa Risk Assessment Score Nomogram Risk Stratefication UCTV

[Gl448 in reply to RMontana]

thanks for the feedback and links. I’ll check them out.

[dhccpa]

Your initial prognosis seems extreme given that you had no distant mets. Just a gloomy doc?

[pakb]

I was coming here to suggest the same as Tall Allen. The triple therapy has had great results. My husband was 49 at diagnosis with stage 4 gleason 9 metastasies to bones. Back then the triple therapy was not around. But he did do lupron asap and then chemo and lupron together about a month after diagnosis. He then went on zytiga plus prednisone immediately after chemo. He is still on that combo. It was 5 yrs in Aug and he's doing well. Scans showed no active mets for 2 yrs- then 1 previous met lit up this year so he did spot radiation and it worked. PSA continues to drop- has never trended up.

His quality of life is really good as well. Dont look at any stats about life expectancy. They were not looking at current treatments or recent stats to make those presumptions.

[dmt1121]

I am not going to give you any medical advice but I will say that getting a second opinion is not a bad idea in order to confirm the doctors' opinions or get another perspective with other options for treatment.

Also, your general health is important and mostly vegetarian diet and exercise are important. Additionally, I personally believe that supplements can assist your main treatment. You should do your own research but one I strongly believe in is mushroom capsules. NIH was slated to do a study on Turkey Tail mushrooms for cancer treatment but it was sidelined because of a sequester of funding by congress. However, you might do some research on this and other supplements, including Omega 3 and antioxidants. Note that some say that antioxidants can assist cancer cells.

Overall, my experience has included a prostatectomy in 2016, Axumin scan after three months of docetaxel and six months of Lupron, showing a small tumor near my bladder and a lesion on my left femur. I started immediately on Abiraterone and had a SBRT treatment for the lesion. The lesion is gone and my PSA remains undetectable. I do have nerve damage in my left leg from the SBRT but still better than not having treated it. Now, I am on Eligard, Prolia and Abiraterone for PCa.

The available treatments now can be very effective, though this is dependent on how advanced your cancer is when first diagnosed, how aggressive the cancer is and the specifics of your case. Check in with your doctors about supplements to see if they may have any adverse interactions but don't be afraid to explore alternative treatments that can supplement your conventional treatment.

Good luck.

[Woodstock82]

Hello from another Dave with Stage IVb. I am three years in, and doing pretty well.

Glad to read that you have been watching the videos from PCRI. One of your takeaways from that should be the importance of frequent and regular weight-bearing exercise, to keep counter-act some of the common side effects of ADT: metabolism slowdown, muscle loss, and fat gain.

Hang in there. There are a lot of different treatment options available to you. I may be "treatable, but not curable" but the goal is to keep me alive long enough that something else kills me first.

[Gl448 in reply to Woodstock82]

Hi Dave! I’m hitting the gym for resistance training 4-5x per week most of the time, but there are days I just don’t have the energy. Even when, my strength has dropped 30-50% since pre-cancer. I used to be a big burly “musclebear”, now not too happy with the rejection in the mirror. 😠

Working back up to the five miles per day walking I was doing before the bladder blockage and TURP #2. Actually got there a couple of days ago, but the bone pain in my hip was so bad the last two days I could only hobble my way through 2.5 miles Sunday, and barely could walk into the gym and back on Monday.

”the goal is to keep me alive long enough that something else kills me first.” I like that goal, hoping QOL doesn’t change my attitude down the road.

Thanks.

[Boywonder56]

Im pretty much dxd like you 5 years ago with the ductal hystology.....been on erleada and lupron or eligard since pretty much day one....was told pallative care best i was gonna do.....welll.....ill say it it sux...and if you dont excercise.....best to start yesterday...as thats about only way to not think death is a better way out......i know its kinda morbid but adt robs you of the qol....if your stg iv....some do much better but they were gym rat paleo eating marathhon running, non drinking,no dope, church on sunday, easy listning music, missionary position,vanilla shake ...etc people bfore pc....i on the other hand ...love this quote: " evryman dies.....not evry man lives"....bw

[Gl448 in reply to Boywonder56]

Great feedback! Love the “not every man lives”quote.

I was equal parts protein shake drinking gym rat and whiskey drinking bar fly before all this prostate crap began nine months ago.

I’m hitting the weights and walking the streets; it really does make a difference. Took me month to back to it though.

Thanks for the feedback.

[Boywonder56]

Well good.....im a good ol irish american.....work hard play harder.....found out that had to cut back on the jamesons...dint mix well with meds....and onc...said wouldnt be wise to cut back on meds.......who' d a thunk....bw