My husband is four weeks post Salvage Prostatectomy. It’s been hell. He was in the ER three times last week with kidney stone twice and then a bad bladder infection. He complains constantly of pain and bone pain in hips , buttocks etc...
First diagnosed 10 years ago Aggressive, treated with three months of Brat therapy and two years of Lupron
Started feeling bad past spring and having signs, was diagnosed with a recurrence. Did all the scans and mri guided biopsy. Found 8 and 9 Gleason . PSA is always on the lower side both times when cancer found. This time just under 4. And last time always has low testosterone. We did some testosterone patches between cancers.
This recurrence he complains of hip pain and deep aching pain. He has arthritis in both hips but the OC said his pain is not from the cancer? They don’t see bone Mets .Mostly PC show contained to the prostrate area. Although his surgeon said he saw some streaks during surgery so most likely will need follow up treatments once they review his psa on his 6 week check up.
Would love any thoughts , advise or insight on treatments, etc... we are treated at CTCA Zion Ill
Concerned Wife
Kim
Written by
Kimmilemo
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As a science based guy, I hate to see posts like yours, Alternative medicine is for the most part garbage, it takes advantage of people in need and offers every sort of cure for everything but the FACTS are as of today, NO CURE OF PC is possible once it has spread. No diet, nor drug, no creams etc. have an impact on the fact our PC is incurable.
Save your money and time, stay with the proven, sadly, all short term fixes, make up a bucket list and live life to the fullest. You should also consider going on one of the many drug trials now being offered, as all are short volunteers. Make your life count for someone down the road, who would otherwise also die because of no cure. we are the front line troops who must fall but at least, we can pave the way for the next line of troops heading into the war against PC.
You demonstrate a lack of understanding of the difference between complementary medicine strategies and alternative medicine strategies. If you were such a science guy you would have offered some evidence for the position you take; however, I don’t care about defending alternative medicine practitioners. I support complementary medicine which includes IP6. And the debate ends here.Read Dr. Shamsuddin’s book and get back to me with your apology.
Not to argue pal, but let me throw some things at you. Have you evidence of a anyone being cured of any type of cancer by alternative medicine? I mean any cancer that has been scientifically diagnosed?? NOT A SINGLE ONE!!!
I am a PPM and as such during a period when I was the PM for a new alternative medical client on the west coast, I was diagnosed with PC. Without telling any of our over 30 partitioners, I enquired about the results they had with people who had cancer. I heard lots of stories of magic cures, "Never lost a cancer patient" and on and on and on. I had access to all of their files. I went thru some 6, 000 plus files with a staff member. We did not find one case where anyone was cured of cancer by any of them. What we did find that many of them were robbing poor cancer patients of huge sums of money in promising they could cure them.
I also got sucked into taking 28 types of drugs from these scam people, at a cost of $700 a month. All total bull shit .
We also found, sadly, some who had given up on real medicine, and who subsequently died earlier than would have been the case otherwise. I had my best friend die after he got sucked into supporting a crooked alternative medical scam artist, who called himself a Dr. as most of them did-some after only a two or three month course. His last words to me were, " I wish I had listened to you Billy". I should have taken a axe and beat that scam artist to death.
So, you show me any PC patient who has been cured by any method, I care not what. If your guy had found something so great, he would be making BILLIONS of dollars on PC alone by keeping us alive.
Nothing Like writing a book, thousands of them out there, including by the bastards that were at this clinic!-the best thing I did was to have my principles close this joint down and send them all packing, but not to jail as most deserved.
I have been battling PC for 19 years now, and reaching the end. I have been on several trials and had access to the best of researchers of their time. I have been beyond lucky. I also have been in the grind and to many medical facilities etc. to know the game.
I have also been in the Amazon jungle, where I spent two months with several shamans. I reconize that most of our medical treatments come from plants.
That said, there is a present a limit and any of us would be remise if we gave false hope, false advice and did not present the facts to those who come to us.
So, you are free to do whatever you want, but I resent anyone coming to this site and making claims that only confuse and cause pain to those here.
One thing you have to remember is we are all going to die someday of something. We are not special or oddities, we PC patients are simply part of the evolution process and happen to get caught with one of the many causes for our demise.
Better to live and love large, make a bucket list and starting living for today.
You seemed to have missed the point: I am NOT an advocate for alternative medicine. IP6 IS NOT alternative medicine.
Please read more: Why don't you begin with "Too Good to be True?" One of the co-authors is Dr. Shamsuddin's colleague Dr. Ivana Vucenik at Univ. of MD Medical School.. Read the patient testimonials in the book concerning use of IP6. Have you read Dr. Shamsuddin or Dr. R. Agarwal's research on IP6 and prostate cancer? Next read Dr. Shamsuddin's text (2011) available through Amazon.
Please find a post of mine that ever uses the word "cure". Never happens.
Before retiring, I had spent 30 years in the health care sector. Long ago I learned the difference between alternative medicine and complementary medicine.
thanks pal, I hate it when people come on this site and spew trash. it is hard enough to get guys to start medical treatment as it is without throwing out false hopes that PC can be cured or made livable.
I was really reaching out hoping someone had something uplifting or maybe something we were missing with my husbands diagnosis. He’s still hurting so bad four weeks out. I was trying to get answers to that. Instead I have individuals frustrated with each other. I know that’s what most of us don’t need at this juncture.
I do apologize to you for any upset. This site is the best in the world to keep abreast of what's happening. That said, we all come at this from different places and angle in the battle with PC. We all are doing our best, so take what helps, and ignore the rest.
There is great debates on various treatment and protocols, where the battle will go, etc. so it is a most difficult situation with no cure available at present. You will find this same friction in the medical community as well, as there is no magic pill or formula at present.
Pc is a dreadful disease to get, so the best advice to you is to get up to speed so you can make informed decisions that work best.
You might want to specifically seek an individual appointment with the Pain Management Physician and Nurses at Chicago CTCA's Quality of Life Center. Tell them all about the pains and difficulties. See if any of it can be palliated with better-administered drugs or extra care. See:
Im sorry to hear that I agree with Tall_Allen. In my 15 years of seeing over 350 men a month with prostate cancer I have rarely seen Salvage Prostatectomy cure and often many complications. I also agree highly sensitive PET (C11, Gallium, FACBC etc) would have been useful before surgery to detect if there was disease outside the prostate before putting you through unnecessary surgery. Would still recommend it today but hopefully he can heal up a little first. He will have many systemic treatment options to use even for his high Gleason grade. Praying for an undetectable PSA!!!
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**UPDATE** & Help Needed - Dad with PSA 1200 stage 4 Original post is linked below
Starting Chemo & Immunotherapy this week
Deciding a plan of care for Stage 4 with mets to skull, spine, ribs, shoulder and pelvis. 
Post Surgery Report :(
The Waiting Game/Post 5 weeks of Radiation for Oligomatastic (3 spots) Prostate cancer after 4 years+ of Stage 4. During \"Quarantine\"
