Let me introduce myself.

[jfoesq]

I have been replying to other posts for a few weeks now, but this is my intro to the group. I was diagnosed 7 years ago with metastatic PC, (4 bone mets), a Gleason 9 and a PSA in 40s. I started my treatment with Degaralix but had to switch to Lupron after the first dose. My doc was/is at MSKCC and because I was otherwise healthy and only 54, I became only his 13th patient to have prostate removal surgery (along with 40 lymph nodes) after 6 months of Lupron. Surgery was not the standard of care (SOC) for those with mets back then, but I chose it anyway. It is my understanding that surgery for patients in my condition has gained in popularity. I was then treated intermittently with Lupron (and for a period of time, with Zytiga too). For the last 2 years or so, I have been taking only the Lupron and have been doing so on a continuous basis. I have a follow up next week and hope to find out that the Lupron is still effective for me. I don't have nearly the knowledge that many in this group have, but I am thankful to learn from others and pitch in when I can.

[Dachshundlove]

Thank you sharing your story Jfoesq. It’s a feeling that I have, that finding a Dr to remove his prostate is what we should be doing. It will be interesting to see if we can get insurance to pay for it.

We are seeing a surgeon in Santa Monica next week and I’m hoping he will be willing to take an alternative course on this.

Keep getting good results! 💛

[jfoesq]

I am glad you will have the conversation with the doc about surgery. I don't make any recommendations except that it's worth discussing and hearing what the doctor has to say about it. If you can please let me(us) know what the doc says.

[pakb]

Thanks for sharing- 7 years is encouraging! What was your PSA at time of surgery? My husband is also young- 49 at diagnosis, mets to pelvic lymph nodes and hip and a spine bone, PSA started at >677 and now 10- and his oncologist wants to see his PSA below 1 before thinking about surgery. He is still sensitive to the lupron and Zytiga/prednisone he is on. PSA has been slow to go down (he was diagnosed 22 months ago) but is still going down.

I hope you find the lupron still working for you!

Polly

[jfoesq in reply to pakb]

Hi Polly-

I am not positive, but I believe I was on the ADT for 4 months time before having the surgery. I think my PSA was less than .05 at the time of the surgery.

[Cheerr in reply to pakb]

Hi Polly,

My dad is recently diagnosed at age 53. Similar mets and PSA 149. Started Firmagon (Degarelix). And awaiting for next treatment.

Would like to know if Chemo was offered as an option to you guys? Or was Zytiga the first preference?

And would a surgery be of any benefit with bone mets?

Wishing him goodluck in his on going treatments

Best,

Cher

[pakb in reply to Cheerr]

Yes- my husband did chemo a month after diagnosis- ADT (lupron) plus Chemo (6 rounds) then ADT plus Zytiga plus Prednisone a month after chemo ended to present (2 years in August). I have a lot of details in my profile- but do need to update. Whether to have surgery or not? You'll find lots of opinions. I would like to have my husband "debulk" by removing prostate but most of what I've read his PSA isn't low enough yet. I keep researching and keep the conversation open with his docs. Initially, our oncologist explained it by saying...if your house was on fire and it started with the couch...putting out the fire in the couch wouldn't help the house fire. And poking around in there isn't always good. But lots if research shows benefits. Weighing risks vs benefits is a constant battle.

[jfoesq in reply to Cheerr]

Polly- Things have changed a bit since I was diagnosed 7 yrs ago. Back then, chemo was not considered as a first choice option. However- under the right circumstances it is my understanding that chemo can be an appropriate treatment along with ADT Additionally, even though I did have my prostate removed back then, it was considered to be radical , if not crazy. It’s my understanding that prostate surgery has become a more common “treatment” these days. The surgery has many significant risks ( Incontinence among them) but I was fortunate with my lack of incontinence (except for perhaps a 2 week period post surgery) . I also may have an occasional very small loss of urine during a BIG belly laugh or BIG cough. These rare incidents never require me to wear pads and never required me to change my underware. When these incidents occur, I can usually prevent the leakage until I get to the bathroom.

I have no idea if the surgery helped me and I don’t take a position as to whether others should have it. But I was 54 urs and otherwise healthy, so my doctor felt I could tolerate the surgery well and I was willing to accept all of the risks. I didn’t want to die a few yrs later f the PC and wonder if the surgery could have helped , so I went for it and am glad I did

Best

JFOesq

[Haniff in reply to jfoesq]

Hi jfoesq,

Surgery was never an option for me even though I asked the docs if I needed one. Their reply was it will do me nothing. I was diagnosed on October 7, 2017 at age 57+ with a biopsy done. Adv Pca, Gleason 4+3 and PSA 192. Mine has mets to the lymph notes. I did 6 cycles of Chemo and have been on 3 monthly shots of Lucrin ever since. Nothing more and nothing less.

On my part: changed my diet to plant based {quite difficult actually} and try eating lots of fruits...trying should be the right word. Still working as an English Teacher in very sunny Singapore. I will be retiring end of this year Exercise intermittently...

Supplements: Vitamin D as prescribed, the rest not prescribed but doing it at the insistence of my lovely wife. Vitamin C 500mg, Milk Thistle every other day, Spirullina, Juicing Mon-Fri, Acai capsules, Calcium, Magnesium and Zinc capsules, Cemitedine and Alleve every morning and night. [apologies for the misspelled words on the supps...in case any other English teacher is reading...hahaha]

Well that's about it. Oh yes, after chemo on April 17 2018, my PSA went down to lowest of 1.7 and now at this present moment, 22 August 2019, is at 3.0 The bugger has been rising but slowly...hmmm

Best regards

Haniff

[jfoesq in reply to Haniff]

Haniff- I am glad you had a good response to your initial treatments. If PSA continues to rise, what are your the steps your docs think you should take next?

Best to you

[Haniff in reply to jfoesq]

Hi jfoesq,

They (both my oncologists) are not worried about the slow rise. Next steps they have discussed with me and family is to move on to Zytiga but only if necessary as they did tests and realised that I am feeling and looking great. And in the very far off distance, a possible cycle of chemo.

Best regards

Haniff

[jfoesq in reply to Haniff]

Sounds good

[Filotimo62]

Thanks for sharing. Surgery now also seems to be the first part of treatment in Australia for men with your level of diagnosis. My partner had surgery (No-one in our city would do the surgery if he had radio first though) earlier this year and has just started on ADT and radio. The next step in battling this condition. Take care of yourself.

[jfoesq in reply to Filotimo62]

Best to you and your loved one.

[j-o-h-n]

Greetings Jfo the attorney.... now let me guess your surgeon was Dr. Eastham and your oncologist is Dr. Morris.... (MSKcc) KEEP POSTING!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/22/2019 6:38 PM DST

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

And- thx John.

Best to you too!

[jfoesq]

Incorrect, John. Mo oncologist/urologist was Howard Scher and I can't remember my prostate surgeon's name at the moment (must be memory issues from the ADT) but he was about 70 yrs old and did NOT do robotic. I had an additional surgeon for the lymph nodes (which were done at the same time) and I have no idea of his name. Dr. Scher was promoted to a position about 2 yrs ago and no longer sees patients, so I now see Dana Rathkoph.