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Test for NSD2 Gene
Oncotype DX has informed me they have no plans to incorporate the NSD2 gene into their 17 gene assay anytime soon. This link tells of the importance of this gene in a study published by Rutgers University.…
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Energy Loss
Hi hopefully your all doing OK I recently had a major Pancreatitis attack,, They were dumbfounded of the cause and assume its the cancer that is all throughout my abdomen.,, Now Im on a no fat diet between that and the 35mg of pain meds I take.. I was told before the cancer feeds off your food intake,, so Im getting much…
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Newly diagnosed or about to hsve biopsy check this out ....very informative
https://www.health.harvard.edu/blog/understanding-your-prostate-pathology-report-200903106
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Just diagnosed and confused about options
I am 57, just diagnosed, 4 cores with cancer found, 3 with gleason of 6 and one with 7. I simply picked a dr in my plan, and he happens to a robotic surgeon, so his reccomendation was surgery. I have an appt with a cyberknife specialist, and i am guessing he will reccomend that. My concern with cyberknife is there is very…
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Treating the prostate gland for metastatic cancer.
A quick update-- My dad has failed Zytiga after a new lesion has shown up in the shoulder blade (diagnosed with bone metastasis, so this isn't a huge surprise), but more curiously, a new tumor visible to MRI has shown up on the prostate after not being able to really ever see one before this (two pre-diagnosis biopsies…
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Metformin
Hi everybody, As I am high end prediabetic due to the Firmagon I have managed to get Dr Pooh to put me on metformin with a three month supply of two times 850mg per day to start. I tried the full strength the first day and had a nasty experience so I did a fortnight on half tablets. I have now stepped up to the full monty…
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Prostate Cancer Risk Assessment and the UCSF-CAPRA Score
Hi there, This is a method for guessing how long you will live and how likely you are to develop metastases. I get a 10 with a 3% chance of dying in 5 years and a 32 % chance of developing metastases, statistically I am a high risk case but I have personal reasons to believe that I will do better than that.…
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Rob Lee
Rob, well known on this Board, is undergoing a procedure today. Keep him in your thoughts! Let him know it.
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Use of testosterone to build up uretha for AMS800 Surgery
I went in for an evaluation to see if the AMS800 would be right for me. I had Prostate cancer surgery in 2012 and 3 months later I had to radiation therapy, 44 sessions. I had mild incontinence first and Kigels didn't help but I was getting by on light pads. A year ago, I had a kidney stone and they went in to break it.…
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Foundation testing?
My original post about this was lost in the outage, so I'm asking again! My dad will be getting a biopsy on Tuesday of a new tumor in his shoulder blade that showed up on a bone scan a few weeks ago (after a 0.25 then .50 rise in PSA from 1.99) while on Zytiga. The treatment facility (which is excellent, I have been…
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liquid biopsy usage
Does anyone have any color on the use of liquid biopsies (e.g. ExoDx IntelliScore) to grade PC post an initial positive needle biopsy? According to my research this technology is not yet accepted pending additional research and testing. I am currently being monitored at MSK under their active surveillance protocol. My PSA…
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Outage and Data Loss
EDITED: I initially posted a response based upon emotion, rather than objective thought. Lost 3 months of data?? Very unfortunate and disappointing. What I as a Member would like to know is.................................... More details on what happened? More details on what are you doing to ensure that this does not…
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A suggestion to the moderators regarding the data loss
Hi As you can see there have been a few posts expressing discomfort with the the situation and the lack of information. My past experience of such situations is that up front detailed transparancy about the what and why of a problem actually staves off more complaints and bad PR in the ling run than being vague or not…
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One Year Update...Thankful!
My husband's surgery was 1/31/18. Fast forward to a year later, and he is doing fantastic! Cancer Free. Best physical shape of his life. Full recovery with very minimal side affects that I feel really aren't side affects! It's amazing to look back at the journey we've been on. I am hopeful this story will help anyone new…
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Hard to Believe
Well, in today's times hard to believe 3 months of current data could be loss. Obviously, there is a single point of failure that was not identified. Hopefully this short coming will be corrected. Looks like our site was not being backed up for whatever reason for 3 months. This in itself may be another issue. Best case,…
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Backup or disc failure
Hi Everybody Dusting off and putting on my IT Manglers hat it looks like they suffered a back up, disc failure or similar catastrophe so they had to go back to the last back up or the last good back up. Hopefully they have improved their back up policy. Horrors like this happen in IT from time to time. I saw a branch of a…
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A suggestion to all forum members regarding the data loss
Hi all What is done is done regarding the actual loss of data. It may well never be recoverable. May I suggest a way to go forward sor us all is to post a snapshot of your history, current situation and open challenges / questions in your existing post or create a new one. That will help to bring focus back to the here and…
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Disappointing
This is so disappointing! Of the three prostate cancer forums that I have been watching, this one has been the worst from a SOFTWARE viewpoint. Really a shame on the American Cancer Society! And now this loss of three months of data. Personally, I doubt I will be back. Wishing my colleagues all the best in their lives and…
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prostate cancer DX January 2017 stage 4 metastatic
well looks like it's comming up on January 2019 and average life according to the doc that i dropped was 2 !/2 years.. ****, am I running out of time.. iv'e had a round of chemo and xgeva, lupron and that ended fall of 2017 and my PSA went from 550 to 45.. the chemo was not as bad as I had been led to believe, but was not…
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Lupron Injections
Have been on Casodex for a week. Next week I will be having a Lupron injection (my first), prior to going to Europe for three weeks. I have heard that the side effects are not to be taken lightly---brutal it sounds like (hot flashes, irritability, sleeplessness). Can anyone who has done so enlighten me on this? Thank you.
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7 Months Post RP
Well, I had my 2nd PSA test on 10/15/2018. The result is <0.1. It is my understanding that <0.1 is undetectable. Smile, I am. PSA, TOTAL <0.1 The total PSA value from this assay system is standardized against the WHO standard. The test result will be approximately 20% lower when compared to the equimolar-standardized total…
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Cipro red alert
I have mentioned side effects of ciprofloxacin before, black tongue (temporary) and neuropathy in my feet (permanent). Every time I took it, the neuropathy got a little worse, so eventually I refused to take it anymore. I do occasionally have unexplained muscle tears and ligament damage. I urge everyone to read this lady's…
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recently started Erleada
I've had PC for 14 years and aside from the usual incontinence and loss of libido and sexual function my life has been relatively side effect free and good. I've been on lupron for several years and the PSA started to rise in the past 12 months. Dr. tried a suppliment to the Lupron which did not work (scared me) and, now,…
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Hormone deprivation and depression
Hello gentleman. I am a concerned wife asking for advice. My husband, age 67, was Dxed prostate cancer (4+3) in Dec 2017. He opted for external radiation/hormone deprivation over 8 weeks, ending early May 2018. He refused the second hormone deprivation shot mid- treatment, because he was feeling very depressed, nearly…
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First PSA Test Came Back Elevated
Ok, so I was having problems with painful urination and discomfort in my groin area. As a result, my PCP ordered a PSA and it came back at 5.11. Now, he has referred me to a Urologist that I can't see until late December. Also, he wants me to do a urinalysis. I have been very active this year and dropped almost 70 lbs. I…
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Rising PSA
Hi all. I shared a few weeks ago that my husbands PSA was rising. Started at 1550 and over 6 months of tx with Casodex and Lupron came down to 22. then went up to 24, then 26 and yestready was 96. We're trying not to panick but scary to see that big of a jump. Clearly the current meds aren't working and am sure he'll know…
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First post
I had my annual physical the day before Independence Day and although all bloodwork was clear and my PSA was 1.4, my doctor noticed some nodules during the digital exam and referred me to a specialist. One month later, (the day after Labor Day) I had a robotic RP by a local urologist and have had an unremarkable recovery…
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Prostate surgery and relationships
Diagnosed in February 2018, with surgery in March. Spent a lot of time looking for info pre-surgery, and then reading everything I could find describing what life would/might be like post-surgery. At 7 months out, my doc says I'm doing great and my physical therapist is my biggest cheerleader. Back at work in 3 weeks, and…
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Newly diagnosed 47- year old
Hey all, I was diagnosed this week with prostate cancer Intermediate stage. 8 positive cores 3 cores = 7 5 cores = 6 PSA = 4.2 I am flabbergasted, because I had no risk signs. I have been taking Testosterone supplements (very low testosterone in the low 200s since I was 38), which definitely contributed to the early…
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Worried over decision
i serioudly don’t think ,my RO was looking after my best interested ...that’s my fsult ..now that I have done all treatments 25 EBR and hdr brachytherapy..I’m physically felling s bit better ....but emotionally a wreck ...very depressed..one haunting dilemnac...lymph node damn it ..my urgeon was going to take a dissection…