First time using this site. Reside in US-NJ. Age 63. Had MRI guided fusion biopsy early June 2018, after having rising PSA over last 2 years, quickly rising within a few weeks from 5.7 to 20 (days before biopsy). 11 out of 16 samples were positive. Gleason as high as 10. Went to 3 major cancer centers for options - MSK, CINJ & Mt Sinai. Decided on CINJ & their clinical trial. Have changed diet by eliminating sugar, dairy, carbs, fried foods, baked goods, red meat. Following a Mediterranean diet; lost 20 lbs in 2 months. Now at 228 and 6' tall. Hope to lose 30 more. Started on Firmagon shot 2 weeks ago, and will continue with hormone therapy including Zytiga. Will also have robotic prostatectomy surgery in few months as part of trial. Have been taking numerous supplements for years, some of which may have been harmful??? Looking to hear about side effects and solutions of hormone therapy & surgery, finding people in similar circumstances and experiences, and what supplements may actually work. Thanks.
Diagnosed 1 month ago metastatic to b... - Advanced Prostate...
Diagnosed 1 month ago metastatic to bone; now on hormone therapy. I'm new here.
Sorry to hear about the diagnosis, but glad you found this forum. It seems you have hit the ground running already. There are plenty of information on this site about different treatments and the side effects. Seems to me that you have selected a “multimodal” approach, combining systemic and local. That is what I’m doing as well at MSK. You can search under “multimodal” here and there is a lot of information you can collect.
You dietary regiment seems very reasonable, and combined with exercise should help you cope with any side effects better.
Make sure you get a genomic profiling done, there are a lot of targeted therapies around and more coming.
Build a medical team around your needs, and be your own best advocate. You’re the only one with a skin in the game.
I had my RP two and a half months ago, and all went as expected. Incontinence did get much better over time, and ED is addressed via injection.
Supplements are a subject of heated debate on this forum. Best you read the arguments for and against and make up your own mind. Do a search here.
This is the beginning of a new chapter in your life. You have a very long road ahead of you. Stay positive and determined.
Thank you. I am in process of starting a cancer wellness program at my gym which is an 8 week program consisting of 16 1 hour sessions with a personal trainer tailored to me. I am also going to acupuncture weekly; my insurance covers 80%. In addition, I have requested genomic testing.
I assume this is the clinical trial you are talking about:
clinicaltrials.gov/ct2/show...
With bone mets, the benefit of prostatectomy is uncertain. This procedure, known as "debulking," should only be done in the context of a clinical trial, as you are doing.
pcnrv.blogspot.com/2016/08/...
pcnrv.blogspot.com/2016/08/...
Now, whether using surgery or radiation to debulk is another matter. My personal feeling, is that radiation has a lower side effect profile, so given the uncertain benefit, why not go for the therapy that has the lowest side effect profile? If you stick with surgery, you will want to get extended pelvic lymph node dissection (ePLND) with it, which carries risk of lymphocele and lymphedema. If you get radiation, you will want a combination of external beam to the wider pelvic area with a brachytherapy boost to the prostate. Recently (last week, in fact), this has been shown to be the most curative therapy to GS 10 men without mets. They can zap your bone mets at the same time, providing additional debulking:
pcnrv.blogspot.com/2018/07/...
TA,
Are those your write ups on the pcnrv? Or Allen Edel name is just a coincidence?
Of course that's my blog - I also write for the new Prostate Cancer InfoLink (along with Mike Scott)
It’s well written and well organized. A lot of quality work went into it. And I can see you also write novels!
Thanks. I'm pretty good at translating "Medicalese" into ordinary English. I sometimes go with patients in my support groups to doctor visits, and translate afterwards what they were told. I actually learned a lot about genetics when I was doing research for my medical/science thriller "Thaw's Hammer."
Thanks for the info. As we have not communicated before, I appreciate you telling me about you and your background. Are you a prostate cancer survivor? Do you have a medical background?
Yes, i am a PC survivor. No medical background per se, just a heavy background in statistics and biochemistry which helps me interpret the studies I write about. I consider myself a patient advocate, and, I hope, help a lot of patients regain their power.
That’s exactly how I would describe you. A patient advocate with a ton of valuable knowledge 💕
Just keep a positive attitude. I was a 66 year old very healthy guy with a clean med background. In Nov of 2017, I got severe back pain. Xray showed mass on pleura of lung. Bloodwork normal except psa of 11,000! Biopsy of lung positive for prostate cancer. After wasting one month with a Virtua Sleep aPnea Dr who implied she was a cancer doc (all pulmonary tests were excellent (98 ouf of 100) I went to Penn and a local cancer institute. I chose the local sj place as their plans were the same. During the month with the fake cancer doc I was given alot of breathing tests $21,000 worth but no meds or pain meds! I was not eating, dropped 20 ild and deceloped a mindset that I was ready to meet my maker. A body scan showed it spread to my thoracic area. The Sj place put me on Lupron and Zytiga/predisone. After 1 month psa dropped to 188, I ate tons of pasta and broccoli rabe and spinach. No more soda. Green teawith honey and lemon. No keychup, found honey is greay on sweet potatos and baked fries. Anyway, in 3 month, psa dropped to 21 and I became much stronger. I returned to work pt. After 4 months I started Xgeva for my bones. Psa dropped to .5. Body scan after 6 month in July 2018, showed same as in Jan 2017 but thoracic tumors shrinking and eroded ribs repairing. Psa was .4
The scan results and low psa has given me a greater feeling of positiveness. There is light somewhere out there. Be vigilant and run from your dr if you feel he is not involved in your treatment Prsyer and a. wonderful wife has worked wonders. I take vitamins: D3& K2, calcium, magnesium, C, and tumeric. Maxwell CBD saved me from all the pain in Dec while under the care of the fake cancer doc.
Stay positive, eat. Only side effects have been a 10 second hot flask mostly when I eat. I send you blessings.
PSA of 11,000!!! OMG. Was this a gradual increase over time? Thanks for your positive thoughts and blessings. The same back to you.
I had never been sick. My back hurt. 11,000 was my first reading. It is now .4
Welcome to our rag. We are all in a battle here with you. As of the diet my nutritionist said to eat anything I can to keep my weight up as the cancer will make its own sugar. Oh. Stage 4 with Mets here. I would not wait to long in getting treatment .once the cancer leaves the prostate it’s to late to have it removed. And yes a lot of the supplements attack the cancer meds themselves and prevent them from working. On hormone treatment here after 6 rounds of chemo.
I'm looking to lose more weight at this point; 6' tall and now 228 lbs after having lost 20 lbs in the last 2 mos by eliminating sugar dairy, red meat, carbs and adding organic fruits and veges, nuts, salmon, sardines, etc. Goal to reach 200 within the next 1-2 months. Do you know what supplements, in addition to antioxidants A,C,E, to stay away from? And what to consider taking?
Really can’t help on the supplements to stay away from ,my Dr doesn’t really condone much as he has had a lot of patients go backwards on there treatment due to doing there own thing , example mega does vit.C works against some of the cancer drugs. Wrapping around them and making them useless. I’m sure the guys here can tell you a lot more than I can Keep up the fight
Thanks. I look forward to input from others too.
You can click on my profile to see what I've done since being given a similar DX over 4 years ago. I've taken a very aggressive approach with my aggressive G9 PCa. It wasn't/isn't easy but results remain good as of this date. I opted to radiate my prostate early on, surgery carried too many risks. I also had several affected nodes radiated as well. Dr. Myers once noted that this was one of the best things I did in regards to my multidimensional approach. I also had early chemo per CHAARTED and remain on triple ADTand Metformin (as part of cancer treatment not diabetes).
Ed
Thanks. Good info.
Hi and welcome...i had robotic surgery almost 2 yrs ago as I had a PDA of 69 with 6 out of 6 cores to be cancer. After I had 37 beams of radiation which took my pda down to .09 for approx 3 months and then doubled and rose to 2.7 and metastasized to hip. Immediately started Lupron and after 3 months PSA is undetectable...side effects are hot flashes...many..but do not last long and weight gain in the mid section. I think its well worth the undetectable status for now! It seems to effect everyone differently. I wish you the best
Thanks What's with that weight gain in the mid section, which I am also experiencing? I have lost 20 lbs in the past 2 months by changing my diet, but the stomach is popped out! Maybe I should be doing crunches.
Try to improve your general health issues before treatment side effects slow you down. Dont underestimate the value of diet, exercise, and environment. You will need every advantage. It is important to go into the battle strong. This group will educate you more than any 1 doctor could ever do.
Thanks. Looking forward to absorbing the wealth of knowledge available in this forum.
Just writing to join in the welcome! I’m 73, stage 4, with bone mets in spine, pelvis and ribs, but fortunately no bone pain. Have been on hormone therapy for going on 4 years, had taxotere (chemo) early on and am now back for a second round since new growth has appeared. Meanwhile, we’ve hit it with XGeva, XTandi, Zytiga, Provenge, spot radiation, and Xofigo. You’ll find a lot of guys on this site with extensive knowledge of recent literature and trials (really good fodder for talks with your oncologists.) I’m not one of those guys. For the most part, having found a medical oncologist who is both at the top of his game and very accessible, I just trust his judgement. My role in this choir is to remind us all to de-stress as much as possible, to adjust to new limitations, and to enjoy the hell out of life. I’m now almost two years past the expiration date given at diagnosis, and going strong. So the game of life has changed drastically for you, and I’m sorry you’re in this pickle with the rest of us, but if you’re looking for folks who know what it is like and who’ll support you, you’ve come to the right site. Welcome, brother!
Thanks. Your info is greatly appreciated.
Hi! Where is CINJ? Also who are all your doctors there? Are you on a clinical trial? If so what is it and who runs it? Thank you in afvancr for answering my questions. Looking for best next options in Philadelphia, NJ, or NY. Was GLEASON 9-10. Had Robotic surgery and undetectable until now 5 yrs later. Want to be informed on my next best steps to add as many years as possible. Many have suggested radiation oncologist first. Still trying to sort through this site to get information. No and Philly are closest but if the best are in NY will go there. My issue is side effects and working, which I need to do thanks again!
CINJ is Cancer Institute of NJ in New Brunswick NJ. I have been signed up for their clinical trial addressing the effectiveness of hormone therapy and robotic surgery for metastatic cases. Dr Isaac Kim, Chief Urologic Oncologist, heads up the group and trial. Wish you luck.
Well we're HopingForTheBest for you too. My role here is the court jester. I love humor which is my hobby and I try to remind everyone here to laugh. It's a great therapy. Laughter is like a mini vacation. So here goes one:
A guy walks into a wig shop and asks to buy a triangular piece of red hair.
The proprietor of the store asks him "why a triangular piece of red hair?"
The guy says it's because my girl friend is bald "down there".
The proprietor goes in back of the store and comes out a few minutes later with the triangular wig and says to the guy "that will be $79.00, should I wrap it up?"
The guy says "no thank you, I'll eat it here".
Good Luck and Good Health.
j-o-h-n Friday 07/13/2018 9:39 PM EDT
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