Hello! After lurkng for a while I figured an introduction would be in order.
I was diagnosed with metastatic prostate cancer last year on my 58th birthday (April 2016). I had been experiencing severe back pain for several years which I thought was normal for my profession (I own a brewery). My psa had been running < 4 with no noted physical enlargement. Early in 2016 my back pain was increasing and I started experiencing numbness in my feet/legs - my chiropractor said it was pinching of nerves due to slipped disks in L1 - L3. I finally bought my own MRI scan which came back with notes indicating small 'numerous' focci (mets) all over the lower spine. A blood test indicated psa was 550 and alkaline phosphatase was 212 (high!). 4 days later I woke up unable to get out of bed, my wife took me to the emergency room, where 4 hours later I was paralyzed from the mid chest down. Again, this all happened over a period of 4 days, and prior to that I had no clue. Boy was I blindsided!
After 3 hours in an MRI tube they finally located a large tumor on my spine at T9, an emergency laminectomy removing part of T7-T10 as well as a large portion of the tumor was performed. The pathology results indicated prostate cancer. Given the psa number and significant bone involvement I assume there was no need for a prostate biopsy, I did not get a Gleason score.
My Oncologist put me on aligard (luprin) 90 day injections, and I had 20 rounds of radiation, and 8 rounds of chemo (taxetere), and casodex - psa initially went up to 698 in the first month and then plummeted to .29 within 6 months, testosterone was 12. I also started a ketogenic diet, nutritional supplements, cannabis (high thc), hyperbaric, etc during that 6 month period. After finishing chemo in December 2016 my psa started immediately rising - doubling/tripling every 4 weeks and finally rose to 36 last month. The Dr. eliminated the casodex and recently started me on Zytiga.
It's been an interesting ride, I've learned a lot and have had much encouragement from friends and family. I feel relatively well, managing drug side effects, I guess I have yet to fully realize what all this means. I'm approaching this like I have a really bad cold!
Glad to have found this group!
Prost!
- Greg
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Welcome - sorry to hear about your situation, but I and love your attitude. I also love the fact that you brew your own beer (and by the looks of those medals are quite good at it!).
Quite amazing they wouldn't pay for a MRI. Infuriating actually.
Anyway, hang in there, and know that your circle of friends has now grown even wider!
Welcome Gregg, I am glad you found this group. You are at the very beginning of this journey. There has been so much new research in the past decade on advanced prostate Cancer in the last decade, They will likely have just as much new in the next decade , and I hope for a cure. I have been through over 11 years after being diagnosed stage 4, learn all you can, assemble the best team of Doctors, keep a positive attitude, that you seem to already have .There is so much good information on here, we are counting on you to be a long term survivor, and to help the newcomers when they first come to this group years from now. all the best,Dan
Sorry you are here, but the brotherhood welcomes you. You had an interesting ride to say the least. I also was diagnosed with advanced cancer when I was 58. Like you I had no warning signs. They caught mine when it had only spread to the pelvic area.
It seemed that you had to be your own advocate. Sorry for all the added stress.
There is a new PET scan that was just approved last year for prostate cancer. It is supposed to be a lot better at finding mets than other scans. It is still not widely available. I had to go out of state to get mine done. Information on it is listed below.
I am hoping others can offer you advice. I do not know if it would apply to you, but they have found very good results using a mixtures of hormonal therapies together like Zytiga with Lupron. However, most of the studies they started treatment early on. I was on Lupron for a year before they added Zytiga. At that time they stated I was towards the end of the recommended time to start dual treatment. The fact that you were on it then off may indicate to much time has gone by.
Well, seems like you are just getting started. Sorry to hear that the enemy dealt you a first round mandatory eight count. Good to hear that you got back on your feet and starting boxing the ears off the little devils that made the mistake of messing with you. Have you considered Provenge? I can see that your not eligible for Medicare which covers Provenge so maybe your primary insurance does. Keep a close eye on your diet and try and exercise as much as possible. When I was diagnosed (stage 4) 2.5 years ago I made one huge change and that was to realize that my life was officially different. Adapt and continually adapt, you will be fine for many years.
Thank You nameless! Yes - I've always said that this darn cancer won the first round! I used to walk 50+ miles a week, after this hit I was in a wheelchair for 2 months, then graduated to a walker 2 months, then a cane and now I can amble around fairly well unaided - yay! I started hyperbaric one month in - not sure if it had any effect on the cancer but it appeared to really help heal up the spinal cord damage very quickly! I agree...life will never be the same - vive la difference!
Where are you being treated? Sounds like they are monitoring you closely. That's a good thing.
(I was diagnosed very metastatic to many bones and nodes in Nov 2013 at age 65. Excruciating pain to L4-L5, and a nearby enlarged lymph node. Fortunately, I got a diagnosis and got onto Lupron fast enough to make my PSA of 5,006 start plunging, and taking my Alk Phos from the 400s down toward a normal range, and, thankfully, to make my pain fade away, and avoid surgery.)
Are you already on one of the bone protecting agents, Zometa (zoledronic acid) or Xgeva (denosumab), or something like that?
Hope you do well on the Zytiga. Keep us informed.
Don't drink too much of your beer!
Prost!
Charles
So sorry you have to go through all of this. All of us here know what it's like so at least you are with a lot of brothers who understand and are here to help and support each other.
I'm in the same boat, diagnosed in February with stage 4. I went in with back pain like you did, had a bone scan that showed mets all over my skeleton, quite a bit in the spine, pelvis, legs and shoulders. My PSA was 463 and Alk Phos over 600! I'm glad I didn't know how bad that was when I saw it.
I'm coming up on round 6 of chemo in a week, PSA is now .2 and my Alk Phis is 72, well within the normal range.
Like everyone else, I have a lot of anxiety about what is coming down the road, but we all must learn to live in the present moment of time. Each day, one at a time has to be appreciated and lived to the fullest. That's about all any of us can do now.
It's good to see your great attitude, that's such an important thing to maintain moving forward.
I wish the best for your treatment and stay tuned to this channel.
Your appearance and courageous words certainly make a unique entry to our group! You stand upright for Victory and not for Defeat. I hope you will hit your cancer with full force and you have the support and best wishes from all in our group.
Not only PSA testing but the dreaded DRE (digital rectal exam). My PSA was a very innocuous 2.7. The DRE told another story and I was off on my PC journey.
WOW Greg! So much, so quick with such a positive outlook. Stay positive Keep searching and lurking and being your own advocate with the help of these precious people and a great medical oncologists I hope. My best wishes moving forward. Cool medals
Greg, You have been very pro active once you knew where you stand. We must manage our healthcare. This group has been invaluable to me as I am embarking on the journey myself. They are knowledgeable as well as sympathetically understanding.
I believe what "all this means" is I/we have a new normal. Your positive attitude is essential to continued survival. Stay informed and keep doing what you like to do.
I am on here because my bro in law is going through this with an aggressive cancer and a Gleason of 9. We are hopeful. Men need to remember their exams just like women with breast exams. Never pleasant but my bro could have caught this sooner. He wasn't checked for three years even though he had a high PSA YEARS AGO. JUST DIDNT WANT to go. You gotta do the weird stuff and walk away. No one likes it. God bless everyone on this site.
You said it well. It's too bad all middle aged men aren't forced to read through posts like yours -- they might wake up and realize the risks they are taking by avoiding a tiny bit of unpleasantness. Why doesn't the medical establishment place a much bigger emphasis on screening and prevention? DRE's should be mandatory, just like colonoscopies are pretty much mandatory or at least expected.
Welcome Greg. Sounds like we are almost twins. I was 58 in March if 2016 and diagnosed in June with stage 4 pc...lymph involved...Bone mets and totally blind sided. 15 months later I cannot remember what it was like to wake up without this thing in my life. It's like a death. Don't deny your feelings. I have a good cry now and then but get up and carry on with some of the best days ever...because I now realize how precious life is. All the best.
Welcome to the group! Once again, I can express that I'm sorry you have to be here to join with us in this lovely journey, but we're certainly glad to have you here. You will learn much from those who lurk as well as participate here in the group. This disease is insidious, but it can be dealt with.
In my own time with this disease, I had a Gleason nine at age 51, and I just passed my ten year diagnosis anniversary last week. Mine was caught by an extremely aware primary care physician who tested me in February 2007, when my PSA was only 4.5; within six months get it escaped the capsule, was going into the seminal vesicles, into two lymph nodes, going up the neck of the bladder, in the surrounding muscle wall… I was instantly an advanced prostatic cancer patient at that point.
Your attitude is outstanding, and that will be of great benefit to you as you move forward. We all have our down days, our pity parties, but there's an incredible brotherhood of people out there who can help you through. Research is on going and actively happening at many places around the world. When I was first diagnosed, we had basically ADT and chemo… Now we have a plethora of second line drugs, and many more in the research path on their way to acceptance. Treatment protocols of been changing rapidly, especially over the past 4 to 5 years. My basic advice is to stay vigilant, study and learn all that you can about the disease, and lean on the brotherhood here as well as at other support groups throughout the world, because they're made up of people who are going through exactly what you are, and their help can be invaluable!
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Keep searching and lurking and being your own advocate with the help of these precious people and a great medical oncologists I hope. My best wishes moving forward. Cool medals 
A brief introduction
Hormone Therapy failing?
Introduction - Wife/Caretaker of Advanced Prostate Cancer Husband
Looking to be aggressive, but in the right way?
