When I didn't know anything about PCa I was rushed into an RP and when that failed a worthless SRT. When my PSA reached 1 after the SRT my URO said to find a Onco. On searching on Google The Cleveland Clinic ads kept displaying on how they were experts in treating PCa..So I went to the CC and saw the head Onco on PCa. I told him my URO wanted to put me on Lupron. The Onco said my URO was wrong and rec'd Lupron because he liked me and cared about me. If the SOB liked me how come he didn't do a better job on the RP...the MF never even had time to answer my questions. Anyway, the Onco at the CC said I should do nothing now and maybe when the PSA reached 10 he would do a scan and think about Lupron.
I started doing some research about Lupron...the cardio side effects, diabetes and how Lupron almost always causes CRPC after 3 cycles...I thought Holy Shit....then I saw a video by Dr. Kwon at The Mayo Clinic. I called an made an appt with Kwon. At this point my PSA was 1.2....After spending $2000 on airfare and hotel rooms and spending 2 hours in the waiting room my name was called. I walked into Kwon's office and after 15 minutes in walks Kwon's PA...the little prick wouldn't take the time to answer questions but told me at Mayo they think outside the box. Finally Dr. Kwon walks in, shakes my hand, and tells me to come back after my PSA reaches 2 and they will do a Choline 11 Pet Scan...I saw Kwon for 5 minutes.
After 11 months my PSA reached 2..I spent another $2000 to go back to Mayo and had the Choline 11 Pet Scan...and it turns out my URO, "who liked me" had left seminal vessicle remnants....recommendation Cryo Ablation to area treated previously with SRT..I told my GP what Mayo said and he contacted the Onco at The Cleveland Clinic...the Onco called me and said don't do it because it won't work.
I liked Mayo's idea because I did not want to eventually go on Lupron. $5000 later ($2000 for air and hotel + $3000 out of pocket for the cryo my PSA was <.1
Check this out...turns out the MRI guided Cryo is investigational and only done at Mayo..so I was part of a study...the good Docs at Mayo wanted me to return every 3 months over a time frame of 24 months for an endorectal MRI.... At My Expense ($2000 a crack) = $16000...I thought the hell with that and never went back...at 18 months my PSA was .1 then .2 then .3...The Doc at The Cleveland Clinic said I told you it would not work...you would have gotten that 18 month PSA <.1 from a shot of Lupron.
At this point I said the hell with these Docs...they are over loaded with patients, don't have time to read all the studies and are FOS (full of shit). Check this out...I had been reading Dr. Strum's papers and how he advocates Cabergoline to block a back door...2 Onco's, 1 Uro, and my GP never heard about Cabergoline. In fact after the cryo at Mayo they never rec'd I go on Avodart, Metformin, or Cabergoline.
My best bet is to self direct my own treatment...against Nalakrats advice I gave up fishing ( I didn't want to end up sleeping with the fish), and started reading PCa studies, watched Dr. Myers videos, read all Dr. Strum's papers, and joined this great group. My GP is willing to write prescriptions as long as I bring in a study. So, IADT Casodex, plus Avodart, Metformin, Arimidex, and Cabergoilne + the usual supplements..so far my PSA is .1
Oh..I forgot to mention the great advice I got from The Mayo Clinic when they found out about the BCR after Cryo..."If you live long enough you will die from prostate cancer"...thanks Doc and fuck you.
Gus
Written by
gusgold
To view profiles and participate in discussions please or .
Gus, I hear you Brother, we must advocate for ourselves , lest we be treated at a minimum standard of care. I brought the paper on cytozan to My Oncology apt yesterday, so she will be familiar with it when I need it. ncbi.nlm.nih.gov/pubmed/145...
Dan
Ps 35 years as a comm. fisherman I slept with a lot of fish, what kind of fishing did you and Nal do?
Gus, sorry for what you are went/are going through. It is hard enough dealing with advanced cancer that you should not have to fight the doctors.
I also have frustrations with the attitude of most doctors on my "team" (or what passes for a team). After my surgery where they removed my prostate and 14 lymph nodes (one 100% cancer), my followup meeting with the surgeon was by iPhone when I was in recovery. His job was over and I did not see him for months. Turns out I have a rare form (Ductal) that can be hard to detect and treat. Next stop was to the medical oncologist who had to look up some very basic facts about prostate cancer on her phone while had our first (and only) meeting. We never got to discuss how to treat Ductal cancer. The path forward (determined by the surgeon before the operation) was two years of Lupron and 38 rounds of radiation. The radio oncologist was very good, but he admitted he never heard of Ductal cancer. That said he was willing to learn and spent a lot of time with me. I gave him some references and he contacted some associates in other states to learn more. He took my case to the "tumor board" where he was unfortunately shot down. I had to fight for them to stain samples from the pathology samples to see if it would be positive for PSA (Ductal, like small cell, often does not show pup in PSA tests). Result was that 30% of the cancer does not respond to PSA tests. Based on medical literature the best way to follow this 30% is with bone/CT scans. Once again, had to fight to get scans. Do not know if they will re-authorize the scans next year. Asked about bone loss with Lupron and they stated that it is nothing to worry about. They stated I should stop thinking my cancer is rare (even though it is), and just follow their standard treatment procedure.
All I know is that I am getting tired of fighting the system.
I should try to change but I am just getting tired of having to fight for every small thing... After reading others on Lupron and bone loss, I fought since October to have a bone density test. Just got it in January (~8 months on Lupron) and it showed "low bone mass as defined by the WHO" (osteopenia). I was told not to worry, and that they will NOT retest bone density for at least two years, or treat it.
Just tired of fighting every time I go to the doctors...
Who does Bone Density tests? Is that a path lab? Also will Medicare and a supplement pay for that? Thank you.. Do you know if Eligard is as bad as Lupron in regards to bone density loss?
Most hospitals run bone density tests. Quite often it is connected with the women's health clinic. (At Henry Ford it is run out of the breast cancer center.). You will need a scrip from the doctors.
I am only 59 so I do not know if Medicare will pay for it. I do know that I had to pull teeth to get my test. The cost on the bill was $700. My insurance company payed most of it. I also know that more than one doctor stated that they are tired of fighting the insurance companies and are very reluctant to do so. A bit off topic, but I am strongly thinking of changing my POS insurance from Henry Ford to U of Michigan.
Dr. Who," I had to fight for them to stain samples from the pathology samples to see if it would be positive for PSA (Ductal, like small cell, often does not show pup in PSA tests)." What gave you the idea that you had Ductal before the pathology report verified it?
I did not know it was Ductal until I got the pathology report. Luckily for me, they keep pathology slides for future testing/comparisons. It took a couple of months for me to do the literature search and discuss it with the radiologist. Even though he had never heard of Ductal cancer before he met me, he fought for me. He burned some serious favers he had with the pathologist to get him to stain a pathology slide that they keep for long term storage. This was done "on the side" for no charge.
I also had to fight with the surgeon to even operate. My cancer had spread to the pelvic lymph nodes. The surgeon wanted to forgo surgery and jump to radiation treatment. I had to show him studies indicating positive outcomes for cancer that "mildly" migrated to the pelvic area. My secondary treatment plan was told to me by the surgeon during the infamous iPad post surgery meeting.
So far, I had to fight to have surgery, fight to get them to test how much of the cancer would not show up in a PSA test (~30%), and fight to get a post surgery bone/CT scan. I even had to fight to get them to test my Testosterone level (to determine how effective the Lupron was working).
My husband has ductal and our oncologist told us a gleason 10 is a gleason 10 and is treated the same. I could not get them to stain samples because he said the treatment would be the same. He is currently on Loupron, Casodex, 2nd chemo (Docetaxel) today, along with prednisone and Xgeva. His psa has dropped from 11 on 11/15/17 to .08 today. His first loupron shot was on 11/15/17. We are very pleased it has dropped this quickly but my greatest fear is it will rise just as fast. I have learned so much from this site you people are the greatest .
So, I'll probably be sorry I asked, but why did Nalakrats advise against fishing? While we are all going through these trials and tribulations, we should be enjoying ourselves by fishing, golf, tennis, or whatever floats your boat besides fishing.
I read a study that arginine pyroglutamate + HMB promotes muscle mass while on ADT. But I read where arginine raises IGF-1 and can promote tumor growth and other studies that say arginine is ok for guys with PCa. What is your opinion
Dr. Snita Sinukumar is the First lady Cancer Surgeon who has obtained a Superspeciality, Mch Degree In Surgical Oncology From Tata Memorial Hospital and is highly familiar with the diagnosis and treatment of multiple cancer sites and having vast experience in various cancer surgeries such as Weirtheims surgery, Commando operations, Thyroidectomy, Breast conservative surgery, Mastectomy, whipples surgery, Colorectal surgery, Radical Nephrectomy and Cytoreductive surgery for Ovary cancer. Please visit : cancerspecialistpune.com
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Dr. Kwon at Mayo
Should/Can I take zytiga/xtandi et al without metastasis diagnosis
Update to Can't treat what we can't see
It's Back...
Median time from BCR to mets to death, without additional treatment.
