Hello, I was just dx with stage 4 prostate cancer yesterday afternoon at 59 years old. Gleason score of 10. This was complete surprise to me as I had none, except the getting up three to four times a night to urinate, signs or symptoms and PC doesn't run in my family. No burning, blood, fatigue etc. Now they want to start me on Lupron next Tuesday and my oncologist states I may have 2 to 3 years to live. Needless to say I was floored. But, I was reading that many of you seem to be going on for longer. Of course I am scared and depressed. I have always been very healthy. Any advice would be appreciated.
Just Dx yesterday: Hello, I was just dx... - Advanced Prostate...
Just Dx yesterday
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Danb1a
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"my oncologist states I may have 2 to 3 years to live." What kind of BS is that? First thing you need to to is find an oncologist who will take the bull by the horns and get outright aggressive with your treatment. I'm 4 years into this stuff and just warming up.
Read this and start planning your 2022 vacation.
scholars.northwestern.edu/e...
Danb1a in reply to
Thank you. 
2-3 years my ass. I am already going on 44 months with undetectable psa <0.02 on 1st line HT treatment after initially being dx with 209 psa and bone meets. Find a good oncologist. You will be around a lot longer than you think, or what some will tell you.
To be perfectly frank - F' that MedOnc. You're in the perfect place to get advice, but we're not MedOncs here. Just do research, get fit, eat healthy, prep for the effects of the androgen deprivation therapy(ADT) - Lupron. Hot flashes, mood swings, muscle loss, & man boobs
You should ask about Casodex - this med stops the testosterone from attaching onto the androgen receptor(AR) on the cancer.
Many of us are on Metformin - a diabetes med that has action against prostate cancer(PCa). Print up science articles about it and PCa and bring to MedOnc(MO) appt.
My story:
theloopnewspaper.com/story/...
Welcome to the brotherhood
Fight On - Randy
The keys to survival here are expressed over and over to the newbies:
1. Find a Facilty of excellence like ucla, John Hopkins and the many more the guys here wil list. Where are you located ? These guys will tell you the nearest place to go.
2. Lupron alone is no longer the correct standard of care for newly diagnosed metastatic PC. Studies have proven that lupron together with chemo or lupron together with Zytega perform much better. I did all three together although no studied yet prove that works better. Just seemed logical to throw it all at it early.
3. Exercise your butt off at least 3 times a week. Preferably weight training. Helps tremendously with the physical and mental side affects.
4. Become an expert on PC and enlist family members to help. It makes them feel good to be able to do something. Start here as there is lots of info on old and new posts. Then go online. But be dubious of false claims and charlatins. Guys here will help with that. This way you can ask the right questions and challenge your dr on the various options.
5. Feel sorry for yourself if you want but only for a week or so then stop. Then Stay focused on the battle and start enjoying and appreciating your life. If you follow steps 1-4 you will have a lot of years to enjoy.
Schwah
"Feel sorry for yourself if you want but only for a week or so then stop. Then Stay focused on the battle and start enjoying and appreciating your life. If you follow steps 1-4 you will have a lot of years to enjoy." Thank you for the frank reply. I live in a small area, So. Illinois, bu am from Chicago. My family lives there still. They want me to come up there to and see an oncologist there, not here in poo-dunk. Number 5 gives me encouragement, because I don't want to give up. I have too many things to do.
Dr. Alicia Morgans at Northwestern is phenomenal and is familiar with latest aggressive treatment protocols. She was my husband's MO at Vanderbilt before she moved.
U of C is excellent. They have a Prostate Cancer Team: uchospitals.edu/specialties...
New treatments are coming along all of the time, so that statistics of 2-3 years is completely out of date. Also, "Stage 4" has evolved to Stage IVa for pelvic lymph node involvement and Stage IVb, for distant mets to bones or other organs. So understand that the treatment protocal between those two audiences is different. You'll want to know which one you are in. Have you had your scans yet? Do you know where your mets are? You will definitely find guys on here who had similar diagnoses. Good luck, try to stay positive, and know that this is just the beginning. Focus on living and making memories. I expect you'll have many years in front of you yet.
2-3 years? Gave me 12-18 months. !4 month ago I got started. PSA 52 and climbing. Opted for prostatectomy as all tests showed no spread. Out of surgery surgeon said not so good, no defined borders. 6 week check up, incontinence down to drips upon standing, but PSA still rising fast. Up to 61, started Lupron and new scans. 2 1/2 Months after first scans and surgery showed 3 bone mets and lymph nodes showed real clearly. Fast growing, aggressive, invasive,Gleason 9/10. PSA already down to 6.6 with lupron. started chemo. (taxotere) on 3 week schedule. PSA started back up between cycles 4 and5. Added Xtandi. Side effects cumulative with each treatment and a hard row to hoe. Went 9 cycles before I hit the wall and terminated chemo. Still constant PSA in 0.140 area. Once recovered enough had surgery on May 1 and May 2, one an orchiectomy to get off ADT drugs and one to rebuild a thumb that had been getting worthless from old injury. If I'm going to be around so long, might as well have a working thumb to enjoy. Every treatment worked and future looks like 5-7-10 years to go. Don't believe the dire predictions the first Drs give you. Learn more and get as aggressive with treatment as you can. This is a great place to learn what to ask Drs and see what treatments are right for you. Don't know your PSA or other details. Good luck with Drs and treatments. Mine didn't qualify for radiation acct full spider web of cancer in ab and pelvic area, but radiation works great for some. ONE STEP AT A TIME, ONE DAY AT A TIME. Just aim for lots of those days and keep your spirits up once you quit crying from the first news.
We've all been through it here. Best of luck and ask anything.
Doug-AZ
PS 68--stage 4
I got here the same way as of January out of the blue stage 4 nodes and bone, the first doc. Gave me 1-2 years second group from Mayo gave me 50 months the MO I am with now is a little smarter and is just going to fight this APC as hard as we can for as long as we can and I say we because I am now an educated APC patient and continue to keep educating myself so WE can make the best decisions possible, the advice you get from our brothers in this forum have been there done that with almost any treatment out there, also the physical fitness and mental state is very important pay attention and work harder then you ever have in your life to stay on the sunny side of the grass with the people you love and cherish we have all been new, scared and pissed off because of this dx as has been stated before get over it as best and fast as you can and keep moving forward with life not dwell on the end that could be tomorrow for all we know , anything can happen
Good luck new brother
If the spot on your lung is a metastasis, then hormone therapy should shrink it. If it doesn't shrink, it is not a metastasis, and if the cancerous LNs are all in your pelvic area, you can pursue curative therapy.
Assuming it is a metastasis, the best kind of hormone therapy is a combination of Lupron with Zytiga plus prednisone, which has recently been approved for this purpose. Here's an article explaining treatment options:
pcnrv.blogspot.com/2017/06/...
If you can see a medical oncologist in Chicago, Maha Hussain at Northwestern is about as good as they get. She is the lead investigator on many important clinical trials, so if one is right for you, she will know.
I have a dr friend you there who is reaching out for me. But people have mentioned NW.
in reply to Danb1a
Go to Northwestern and see Dr. Hussain. She was my oncologist while she was at U. of Michigan. To be blunt, she is one of the top ten prostate specialists in the world. Let her set your treatment course. She has been and remains on the cutting edge of treatment. My current oncologist studied under her and with her for ten years and it shows. Dr. Hussain is a genius. Go see her ASAP.
I was diagnosed at 46 with a Gleason 9, PSA 286 and lymph nodes involved in pelvis and abdomen. My scans are now clean with a <0.01 PSA and first doctor from a poo-dunk area gave me a not so great outlook very similar to yours. I left that office and never looked back. Lupron/Casodex from the start, 6 rounds docetaxel then surgery all within a year. My story is in my profile if you want to read. It's time for you to get busy my friend.
Understand that you have options and it is up to you to move on them. All doctors are not equal and you need a specialist. Smaller hospitals will not offer you the options a major health center will. I have been down this road and can save you the grief. Put yourself in the best position you can to fight this. Your first chance is going to be your best.
The spot on your lung could be a number of things. It's not uncommon for spots to show in scans resulting in a lot of worrying for nothing. I have been there too. If it's only nodes involved you have a chance to cure this. Nothing is for sure except if your not in the right hands it's not going to happen. I highly recommend Dr. Karnes at Mayo in Urology Department in Rochester Minnesota. It's worth the drive or plane ticket. He is at the top of his game in this field and a top notch surgeon. The side effects of a botched surgery or radiation treatment can be brutal. It's essential you have the right team in your corner. Your life will change but it's far from over. Any questions on my treatments or whatever feel free to send me a message and keep us posted
Ron
Thank you so much Ron, I forgot to put my PSA on my question which is an 81. All the great advice here. I have already spoke with my job, luckily I have 20 weeks sick leave, I am NEVER sick, and my family in Chicago. I plan on going there and attacking. You guys have given me hope.
Nothing better than family when times are tough. From the sounds of it there is some great care in Chicago. It takes a load of the mind knowing you have a good job to go back to. Remember, anything worth having never comes easy. Hang in there.
I’d shop for a new oncologist.
dx stage 4 march 2017, gleason 9, psa 59.9, extensive bone mets, compression fracture t12 jan 2017 (just thought i sprained back and toughed it out), several abdominal lymph nodes cancerous. Started Lupron, Xgeva for bones, did 8 cycles Taxotere , about 3 to 4 cycles night sweats stopped - no sign of lymph node involvement (for now, anyway), very uncomfortable urination issue stopped 1st week of chemo, 1 ibuprophen an hour before bed took away most uncomfortable urination problems before chemo, up 7 times a night.
still up maybe 4 times, no discomfort, no ibuprophen. Chemo dropped psa to 1.7 Started Xtandi (with Prednisone!) after chemo (late august). Psa .4 January through May 2018. June psa .3 So about 10 months so far on xtandi. Crossing my fingers. Was given 1 and a half to 2 and a half years (with chemo) . Statistics were 60% dead within 1 year with bone mets and skeletal involvement (2010 stats). Now told I have many years to live. So who knows? You were given stock answer that is probably way out of date. So Lupron and/or chemo worked for me. So far. Like I say - crossing my fingers. Good luck to you on this journey. (BTW actual symptoms started about august 2016.)
Please find a new MO I'm Almost in the same category as you and my Doctor said if I follow his treatments I should lead a long somewhat normal life. I was put on hormone therapy Zytiga,Prednisone,and ELIGARD which is Lupron in a six month injection , along with Xgeva injections monthly for bone mets. I feel better than I have in years hopefully it will stay that way. The only side effects are occasional hot flashes which are tolerable and ED which so far is manageable. Don't give in you should have a long life just not the same one. Forgot to mention PSA went from 14.7 to 0.1 almost undetectable in one month. Best of luck Leo.
I was diagnosed in April 2008. PSA 160+, Gleasons 9. Have been on Zoladex etc more or less since then but the drugs started to fail a year ago. Now in the middle of a course of EBRT.
Was given 2 to 5 years and I'm now past the 10 year anniversary. Don't let anyone put a time limit on your life expectancy because it can become self full-filling if you dwell on it. Just take the best advice and treatment you can find and enjoy the good things in your life, good home life, good food a glass of red or three. And most importantly don't panic.
See if you can find some of my previous posts. My husband is stage 4, diagnosed mid 50s, aggressive, nasty cancer, into his tailbone, outside of margins, your basic nightmare. Fourteen years later, he's still here after surgery, 7 weeks radiation, Casodex, infusions of Zometa for a year and Lupron every 6 months, no breaks. No loss of muscle, no fat, no man boobs, none of the horror stories you might hear. Continue to live as normal a life as possible. Positive attitude! Enjoy every moment you can. Find a new oncologist because as Dr. Bernie Siegel used to say, "If a doctor tells you how long you might live, walk out and find a new doctor". I believe this with all my heart. Sending Aloha Love to you!
Hi Dan, I was Dx age 49, with widespread bone mets and Gleason 10. That was two years ago. It's been a roller coaster, but I'm still here and have no intention of checking out any time soon. Cheers Paul, from Perth.
Wow. What a great group of guys. All these awesome posts to help the newbie get his s—t together. I’m so very proud (although not happy ) to be a member of this fricken group. OUTSTANDING WORK GENTLEMEN!!! This site renews my faith in people.
Some men stay hormone resistant for years - and then there are lots of other treatments. Do some research into the STAMPEDE trial
Sounds very familiar. I was told the same thing in 2012 so don’t accept his data. Lupron is the best choice. I have had close to six years of success with it. I became a vegan in 2017 and wish I had done it much sooner. I have much more to say but I am out the door for a meeting and will post again later. Good luck and may God’s grace be poured onto you.
Would really like to know how "becoming a vegan" helped you. Thank you.
Two months after a short period as a vegetarian last summer, I became a vegan and then had a blood draw. My PSA had dropped to the lowest point ever since being diagnosed: 0.06. Surprised my doctor! The videos below will provide the science behind my decision:
nutritionfacts.org/video/tr...
nutritionfacts.org/video/tr...
nutritionfacts.org/video/ho...
A supplement called IP6 (aka phytate, inositol hexaphosphate, or phytic acid) has also been helping since mid-2015. I use Cell Forte IP6 & Inositol from Enzymatic Therapy. Dr. AKM Shamsuddin's book at Amazon explains how the cancer research points to this natural substance as being a potent anticancer agent.
amazon.com/IP6-Inositol-Nat...
These short videos use the term "phytate", but that is being replaced by "IP6".
nutritionfacts.org/video/ph...
I personally experienced cancer cell rehabilitation in my prostate; it wasn't removed because I was a stage 4 metastatic PCa patient. When my PSA dropped more than would be expected after 2 1/2 years of Lupron, my doctor insisted on a DRE. He could not detect any nodules in my prostate. Now that really startled him.
nutritionfacts.org/video/ph...
I will not provide any personal recommendations on chemo, radiation, etc., as I just don't have any experience with those therapies.
Your happy vegan, CalBear74
Thank you for taking the time and trouble to reply. I have read Dr. Greger's book and remain unconvinced. Thanks again.
Hi , I just wanted to pass on a message of hope, I was dxed 12 years ago as a Gleason 10 ,bpsa 148. With widespread disease to bone and Lymph, and a 3 cm spot on lung. The lung spot was later found to be not related(not everything they see is cancer). Anyway lots of good advice on previous post. I am currently on Vacation in Cornwall, having coffee and waiting quitely for the wife to wake up so we can go to breakfast. I wish you the best, We all know how hard it is in the early days.
Dan
Hello, our brothers in this forum have provided valuable information here. So please, don't think about the few years left that your bozo oncologist gave you. Obviously that onc is not up to date on all the treatments that have proven success. Hit that sucker hard and in no time, you will feel great again. That's what I did and my quality of life is great. Keep us posted.
Nick
Danb1a,
Here are my 2 cents...I've only been here and diagnosis about 2 months ago
1. The grieving stage is different for everyone...ALLOW yourself to grieve. 2. The men here will give you unlimited support, LISTEN to all of them...
3. Family, friendship, and love are really the ONLY that matters in life.
3. Eat good, exercise and rest, rest rest.
4. Life was never and is never going to be fair, stop trying to figure out "why me"?
Breathe
Breathe
Breathe
That's all I got...
P.S. 2-3 years my ass...I feel the best I have in years
My husband Bob diagnosed in 2005 with PC, then stage iv in 2012, 5 Mets to Spine which are now inactive, had a holiday from treatment, then 2017 Mets to 8 Lymph Nodes, and 1 Sternum lesion, now on triple ADT, Lucrin 3 monthly, 1 Casodex & 1 Avodart daily, PSA now undectable. Bob very strong, healthy and enjoying life. Also I recently read on this Forum, that Todd1963 was diagnosed with stage iv, 12 years ago, so read his story and be encouraged. Also find yourself a good PC Oncologist who is willing to hit the PC hard, not only with Lupron. There are plenty of men living with PC as a chronic disease, and getting it into remission. Lastly, don’t take any negativity on board, no one knows how long anyone has to live, only God.
So stay strong, become well informed and pro active in decisions regarding your treatment protocols.
Cheers Lee
Hey Dan,
Welcome to the club no one wants to join, but all are happy that it exists. 😎
All I can do is echo and reinforce the replies you have already received by the others in our army. First, don’t panic. I know, easier said than done, and we’ve all been through that phase.
Start your own research. Being educated on your new enemy and how to keep it under control works wonders for both your attitude and outlook, as well as the practical aspects of fighting PCa, like having intelligent conversations with your treating sources, and an active role in your treatment decisions.
Dump your current oncologist asap and find a new one who specializes only in PCa, hopefully one associated with a recognized cancer center. If all your current MO is prescribing for you is Lupron as a monotherapy, he is living 40 years in the past. The newest standard of care for 1st line treatment of metastatic PCa for most men is Lupron + Bicalutamide + either Zytiga and prednisone, or chemo with docetaxel.
I started out very similar to you 3 years ago. No symptoms other than getting up several times to pee at night. On a regular annual physical exam by my family doc in April, 2015 he palpated a hard spot via DRE. He referred me to a local urologist. Biopsy in 05/15 showed cancer in all 12 cores. Then a CT/PET scan in 06/15 showed a single hot spot on the bottom of my pelvic bone. He gave me 2-3 years to live. The radiation oncologist in his group said they didn’t do radiation except for palliative purposes, to relieve bone pain. I was devastated, as was my wife. I dumped them right after we had “the talk” and started researching the disease, and searching for other treatment sources near me. I ended choosing the Mayo Clinic in Jacksonville, FL over the Moffitt Cancer Center in Tampa, and Univ. of Florida in Gainesville, and haven’t looked back.
So far, I have kept my PSA undetectable and testosterone in single digits for 3 years, and my lone bone tumor has receded to the point that it no longer shows as a “hot spot” on the scan. I have been on Lupron (or Eligard) + Bicalutamide for 3 years, and recently completed a course of 6 cycles of chemo with docetaxel.
Like several of the men in here, I expect to be around for many more years.
So, take heart. This is just the beginning of the battle for you. The treatment protocols and modalities are constantly evolving. New drugs and combination therapies are being approved all the time.
Best wishes to you.
Mark
Story for your battle, but most doctors start with a 50% chance of 5 years 😡😡😡. Now. If you don’t like his diagnosis get another. I’m 67 and was diagnosed stage 4 , 22 months ago, Mets in lymph nodes,ribs and spine. Doctor started me on chemo (taxotore ?) immediately with lupron and Xgeva shot monthly. Had a scan last week that showed no new cancer and some new bone growth. Moral of the story. Don’t give up the battle, we are all probably going to die from this monster but not today. Fight the good fight. Check out Mayo, Md Anderson , and more to see what your options are.
THANK YOU ALL for such great advice and for giving me strength and hope. I don't know you, but you're my heroes.
If it helps I was Dxd Stage 4 Oct 2014. Gleason 9, 12 core biopsy all full cancer, PSA 167 rising to 200 in 5 weeks. And oddly no warning signs, not even nocturnal pees. Not everyone gets symptoms which is one reason so many of us hit stage 4. I am now 0.03 PSA my 40+ bone tumours gone. It's not just where you start from it's very much the path you travel after DX and remaining cheerful has been a great help for me as have the guys and girls on this great site. Relax.
What were you prescribed after you were diagnosed with PC ?? Thank you.
We help take care of a man who is now 95, and has had Prostate CA for 21 years. The treatments that are now available now far surpass what was offered 21 years ago. He moved closer to us about 2 years ago so that we could help him more and his previous oncologist said that there was nothing more that he could do for him. The new one in our area put him on X Tandi and that kept things under control for about 1.5 years , he has just begun Zytiga with prednisone and so far , so good. Find a good oncologist that you trust. Our guy began having some pain about 3 months ago and has had some targeted radiation and he told me he can't recall why he needed the radiation. ( His memory is fine, he just doesn't have pain anymore. I would love to hear from you 21 years from now as well.
You already heard about NW. U of Chicago is also a center of excellence. Dr. Russell Szmulewitz is an oncologist who does 50% research and 50% patient care., focusing on prostate. He will go beyond the existing standard of care, because things are happening so quickly in the research and treatment area that the “standard of care” is a moving target. First oncologist I saw told me I had 4 years. That’s when I changed. Good luck and good health to you.
Sorry to hear about ur dx ! Sounds like you ran into another jerk “doctor “! I was told the exact same thing three years ago after my PSA started climbing again after both radical prostectomy and salvage radiation with hormone therapy. I’m still here and doing fine but I’ve had additional radiation and hormone therapy as metastasis was located via imaging. You like most of us were otherwise healthy when dx. No symptoms except urinary issues and no family history of PCa or any cancer. PCa has no symptoms until it reaches bones.
IMHO, You should get a CT pet scan with axumin which is available in many locations or with PSMA gallium which is available in a couple places. Then you should start androgen deprivation therapy and perhaps chemo or even radical treatment depending on the scan findings. I’m no doctor and I’m sure you’ll get lots of advice.
Good luck.
Bob
After my Lupron failed, a Kaiser oncologist told me "dont worry, Kaiser pays for hospice". I fired him and built up my team with other doctors. Now on PPO insurance and going to Standord and UC Davis for my treatments. This forum is excellent for support and ideas. I am 17 years in the Gleason 8 battle now, done dance competitions and traveled every year on vacation. Do whatever you can for a healthy heart (meds, diet, exercise, Vitamin D) because it also helps your overall health and life extension. I would watch out for osteoporosis, and do something proactive to always keep your bones very strong, because you are looking at years and years ahead.
Hi! My father has metastatic prostate cancer. He’s 71. My mother & my siblings have supported him thru his prostate removal, then hormone shots. Now, he’s prepping for radiation. This has been a two year ordeal, but, if you can gather family members (even just one), who will attend appts. with you & take notes, it will help you immensely. I have four siblings, so we chose an app called “Trello”, where we can post all appts., test results, paper work, notes, etc etc on our Dad. Without THAT, we could never possible remember everything! Take care of yourself, eat healthy, go for walks, and dont let this diagnosis consume you negatively. Think positive & go forth each day searching and partaking in the best choices for YOU. Don’t be afraid to question drs., or even find new ones. I agree with the others, please seek a different oncologist. I’m in the Chicago suburbs. If you need help with anything, let me know! Sending lots of hugs & fierce warrior skills.... ~ heidi
Consensus is you need a 2nd opinion, without a doubt. Try to relax and stay on this site. You have a lot of smart brothers who have been through it all and are willing to share. God bless and good luck.
I don't have much to add to what already has been said except that I am at 11 years post diagnosis and robotic prostatectomy and I stopped buying jellybeans one at a time a long time ago. I have been lucky with watchful waiting but still have a record-able PSA reading. My advise is to get a copy of ALL your medical records, lab reports, path reports, whatever scans and reports included. You may get some arguments against that but you are legally entitled to copies of everything. You may have to pay some for them but it will be worth it. Then GO... to one of the doctors recommended above.
I would get another oncologist ASAP. He/she is in the dark ages. I'm going on five years with aggressive castrate resistant PC. There are so many options that have become available in just the last 10-5 years. The med. I am on now was approved less than three years ago for use prior to chemo. There are others too. Everyone's biology is different. You could easily have 10 years plus and by then I believe it will be a manageable chronic disease.
I know the shock and fear and the dreadful loss of potency but it DOES get better; good years and joy are ahead of you. Many on this forum have had the same shock and family upheaval but we are still all here years later. Last winter we traveled up the Amazon. We got home from England a few weeks ago and next week we are taking a month long road trip to see kids and friends. I'm lucky to be retired but hey this 1-3 thing is pure crap. Get another doc.
I am asking this question genuinely. Have you given up meat and taken to vegetarianism ?? Is this a necessary thing to do after being detected with metastatic prostate cancer ?
Please reply only if you want to. Thank you.
Meat is bad because most of it has male hormones in it. Grass fed meat once in a while is ok. Chicken same thing, get it free range, no hormones. Increase non GMO fruits and vegetables is best. It's hard and more expensive. Do not eat charcoal broiled anything. Making these changes is hard enough but some people go much further. Kevin
Thank you for your reply, Kevinski65.
I was diagnosed with Gleason 9, PSA 31, 3 bone spots, stage m1, doubling time 5 months. They gave me 6 months to 3 years. I went to Boston teaching hospital. They gave me Lupron. It drove the PSA down to 0.2, with Casodex for flare for 2 weeks. I then went 2.5 years and became castrate resistant. I entered a clinical trial, and was put on Xtandi. I am 5.5 years out on Xtandi and Lupron. I've also been giving Zometa a bone treatment. I have osteopenia but bone spots are undetectable. My PSA is .02. I did however take complementary herbs. I turned to a combination pill called Zyflamend for prostate which is being studied. So far, going on 6 years with the same PSA, so I've surprised the doctors. They didn't expect Xtandi to go almost 3 years so far.
Awesome and encouraging. Where did you go in Boston?
Thanks.
Beth Israel, then to NIH in a clinical trial for Xtandi.
Thanks Kevin, what supplement/s did you take?
I would not recommend anyone taking the amount of supplements I took. I took many...too many...now I just take Zyflamend for prostate. This you can get at lucky vitamin.
Danb1a I hope you have found comfort at this site as I did, 50+ replies to I'm new, WOW how cool is that to get the help with understanding your DX, and encouragement to fight back against APC, I have only been here since March and I'm still amazed at the information and out pouring of support.
I thought I would give you more supplement information. When I was first diagnosed I read everything I could find. I soon found out that many of the spices in the kitchen might be a good complimentary addition to the Lupron I was getting. Here is a partial list: tumeric, ginger, allspice, parsley, sage, rosemary, thyme, oregano and green tea. I took an empty spice bottle and filled it with the above ingredients ( except green tea) in equal parts. I then ordered empty gelatin capsules and filled them. I took three a day. I also drank green tea. I still got my every 4tg month Lupron shot. All of this drove the PSA down to 0.2. It stayed like that for 2.5 years while I continued to experiment with complimentary treatments. TO BE CONTINUED...
As I said 8 supplements at a time. D3 and calcium, tagamet ( slows down prostate cancer) aspirin ( slows down prostate cancer; small amounts), palmagranite juice, blueberries, resveratol, black cohosh( not over 2 weeks) cranberry extract. NOT MEDICAL ADVICE ONLY AS COMPLIMENTARY TO ALLOPATHIC TREATMENT.
Thank you so much.
Curiously there is more,; dandelion pills, DIM, Celandine ( only for 2 weeks) , 4mu , noscapine ( these two you gotta order from Europe. 4mu is a body enhancing supplement noscapine is a cough syrup or pill. I ordered it from Belgium. Tea spoons of olive oil helps, I also did the baking soda and malasses thing for awhile. Garlic pills, shark oil, and essiac. ( Do essiac slowly it cleans u out. All this is the tip of the iceberg there's more. THIS NEEDS TO BE DONE ALONGSIDE ALLOPATHIC TREATMENT. KEVIN
As this thread has gone over to supplements, i’ll add my own limited and brief experience.... dxMay 2 2018, stage 4a, on Casodex and Lupron, starting rad next week. But after being poked scanned and tested by one GP, two urologists and two rad oncs, it took a round of blood work by a functional medicine nutritionist md to uncover a serious vitamin D deficiency along with borderline pre-diabetes. He started me on a boatload of supplements and a sugar-free wine-free not-quite-keto diet, with the result that I feel better than I have in years.
The rad oncs said eat whatever you want it doesn’t matter, I replied that putting my attention on diet supplements and exercise gave me the feeling - true or not who knows - that I was doing something positive for myself, and for that reason alone they ought to get behind it. And that knowledge — i can be an actor here, not just a passive victim — got me out of the post-dx why-me poor-me despair. That, plus a ton of loving support from friends and family. And bollocks to all talk about life expectancy, because the plain truth is, all I have, and all any of you and any of them have, is today. So have fun and laugh a lot.
This is true, you could spend a lifetime studying supplements and diet. Try a few things, if u feel better keep it going then get out there and live.
ok lupron its job is to lower ones testrone thats all. it has nothing to do with treating the psa. the oncologists suggested everyone should be on this until they die. mine was down to 3 and remember the average male has a testrone as high as 600. the lower u bring down the psa the better one is. also remember like zytiga it lowers ones psa and there are others. aftger 10 years of fighting this disease i've checked it on the internet and found out i have more info about the drugs i get,what they do then some of these oncologist. be smart find your answers and ask the doc if your not happy with your treatment or what the doc saids change doc. i'm with cancer nw but not always happy with my docs explanations at times.
Thank you for all of the info. Since I first posted my urologist put me on Casodex with the lupin. I also, thankfully, know a lot of Doctors, as I work in E/R's, and I called one who turned me on to one Doc, in Chicago, which is where I am from, but live 350 miles south. My family, in Chicago, has rallied around me like rock stars, my sister in particular. One dr. Dr. Schillder from Rush University, even spoke to me on his own time on his personal phone and told me more in 20 minutes, then what all the doc's here in this area have in four weeks. I am seeing him. I also, after three weeks found out my PSA which was 81 and Gleeson of 10. Again, STILL no sign or symptoms. One itty bit mets, after three intensive tests, found on my lower backbone, but still not absolutely sure, as it could also be arthritis, as I have a hip replaced from playing hockey for 35 years. After two months on the Casodex and Lupron, my PSA is 4. But, my new doc wants to be aggressive and now started me, today, on Zytiga due to the good results. I could have con tinted to stay on my current regime. The Zytiga, which the original oncologist didn't want to put me on, even though of the good results, "You don't meet all of the parameters and it's $10,000 a month so I am not even going to try." It was very satisfying to fire his ass. MY new Doc had his office work on it, got it approved, no issues, and only $10 a month co-pay. I still feel absolutely fine. Very little side effect from initial Casodex and Lupron, except hot flashes, but I always have run a little hot. I have become a vegetarian and try to exercise. I probably feel better now then I have for years. Lost weight loving the veggies. I had this all done because of the GREAT advice I received from this group. so THANK YOU ALL.
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