Question on initial ADT treatment

[davebliz]

Hi, I'm new here. Diagnosed in May, 2018. My PSA has risen from 31 to 38 this month. Gleason score of 8, large tumor and spread to lymph nodes. I've had MRI and scheduled for CT scan and bone scan. My urologist wants to start me on Firmagon on Tuesday. I'll be seeing a Radiation Oncologist but no date yet. Any concern if I start on Firmagon and then stop after a month once I have more test results and perhaps have surgery or radiation? Thanks.

[Tall_Allen]

You wouldn't stop it if you had radiation. You would begin it two months before radiation begins, continue it during treatment, and then for about 2 years afterwards. Sometimes they start one on Firmagon, but then move to multi-month Lupron shots for the long stretch.

I don't think surgery is a good idea for a GS 4+4 with PSA that high. Finding all the pelvic nodes is problematic - many are small, nearly invisible, and hidden in fat.They use a fluorescent dye, but still miss many. Hormone treatment prior to ePLND will shrink the nodes, making them even harder to find.

Here's an article about primary radiation treatment when positive nodes are already known:

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

[Hidden in reply to Tall_Allen]

Very good , Mr. Tall_Allen , thank you for this information...

[Hidden in reply to Tall_Allen]

I did this combo..so far so good . I only had two lymph nodes lit up only.

[Dayatatime]

Any mention of early chemotherapy? Chemo can get to places both radiation and surgery can't get at. In my case a year of hormone therapy then 6 rounds of docetaxel wiped almost all mets out before surgery, shrunk the tumor by 2/3rds and put my PSA to a very low point which is also very important before a localized treatment is done. The lower the PSA the weaker the disease and kick it when it's down. I had a lot of disease in pelvic and abdominal nodes. Depending on your age and doctor I wouldn't rule surgery out just yet either.

Ron

[JamesAtlanta]

Glad you found our site. Sorry for needing to...but a great group here with lots of insight and experience.

My comment is to recommend you get a medical oncologist who specializes in prostate cancer (not a urologist). Preferably one at a cancer center of excellence. A urologist, radiation oncologist and surgeon can all be great members of the team. But I have found that I need a ‘quarterback’ who leads the entire team - a medical oncologist is best positioned to do this. Including being up to speed on the latest treatment and clinical trials.

If you want a recommendation on an oncologist or hospital, just post what part of the globe you live in and folks here will suggest doctors to consider.

Best of luck on your journey! We are all here pulling for you!

James

[JoelT]

You are the poster boy for early chemotherapy or early Zytiga. See an oncologist who specialises in treating metastatic prostate cancer IMMEDIATELY. Don't waste time.

Joel

[Hidden]

Firmagon will hopefully kick,it’s ass. It worked for me . The first shot brought me right down . You will most likely be on some form of ADT for life. I did the Targeted radiation to prostate and pelvis 5days a week for two months three yrs ago. . I’ve had no visable signs and no Psa for over two years. I went completly natural under a naturalpathic onocologist care and therapies as well as our conventional treatments. I believe that we need to pump up our immunity with good things in order to counteract the treatments and symptoms . Nothing takes them all away. Radiation affected me accumulatively . At first you don’t feel much , but towards the end fatigue sets in . I think it keeps working after treatments are over and horrible not so nice side effects like chronic fatigue and depression hit me.. loathed and depressed with anger and total frustration even suicidal thinking and verbally abusing my angelic passive wife for my first years with APC . She married me after my dx and she is my reason to live and to love her and love life now. Even greatly deminished because of no T and all that that entails ie; muscle loss cognitive loss and permanent male menapause.. some suffer more than others. Depends on the many variables between us. All in all we have more in common on this web cite than not. We basically go thru the same things. I expect good things for you . Keep faith in your beliefs .. eliminate stress if at all possible and get exercise even if you didn’t before. This is life or death we can’t play around.. I‘m looking forward to a year from now or two . Once you’ve weaved thru the pain exhaustion and suffering , the mental anguish should retreat and you will live a new lifestyle . That is for sure . But we can still be here to enjoy life .. You will be around for a long time hopefully so make the most of every day not in brutal pain or tormented by anguish . I’ve always been a high speed operator drifting thru life in the fast lane. APC has slowed me down and taught me that love is number one in healing and hope and to take time to smell the flowers and enjoy what we can out of each day. With treatments we need to fend of osteoporosis , heart disease , not just the big “C”, the point is not to worry but to take counter actions . Anything to distract your mind from the pressure washer that you are in right now is important. You need to take time each day to not dwell on this heavy load. Strap on you seat belt.. all aboard .. the little train that could.. think you can survive what you must then thrive to your fullest until the wheels fall offf this sinking ship. Justkeep bailing and treading water. The initial diagnosis and bad stats areall stats for others that don’t do anything ..we cant correct our screwed up chemistries if we don’t change what got us hear. This is just my personal opinion . Some like to,argue the symstics or APC treatments I prefer to live healthier than ever before. Treatments are some mad hatters chemistry project. APC can’t take love from your heart. So concentrate on what you love you will succeed . Positive thinking , positive people that agree with your path and the kinship and help that you can find here will be of great support to you. Ask any question. Someone has the answer.Many know as much as some Doctors and some here know more than many Doctors know. We’ve all been where you’re at now. It was hell . With luck , diligence on your part and strong reasons to live you can be here for decades if all goes right ...Keep the faith .. many prayers!!!

[Hidden]

Welcome to the club..

[Tall_Allen]

I notice that several posters recommended chemo or Xtandi/Zytiga and seeing a medical oncologist to manage the disease. That would indeed be true if there were no hope of a cure. But their recommendation makes no sense to me - why wouldn't someone try to get cured if he can?

[TEBozo]

Dr. LAM at Dr. Scholz office in LA said no ADT until I did my Gallium PSMA PET scan. I followed his advice