I was 44 years old when diagnosed. I had some of the same questions and feelings that I’m sure you are having. I’m now 57 and have been dealing with it “intermittently” for 13 years....
I think the response from PLUVICTO was incredible…and why not do it again…I’m curious what the trigger point would be…what PSA would they think would make the most sense????a lot of us are just...
Sorry to read this…as others have stated…I always remember him saying…” Every day is a bonus" … and lived it…...
GG1273 - I have an unrelated PSA question … was wondering if you could email? jlenington@comcast.net Thanks, Jerry L....
Congrats…that’s great… GG1273 / DJinTonic: I always use Labcorp and the last 3 ultrasensitive tests in the last 6 months or so have been .006, <.006, and just a few days ago it was .014. I think I...
Mel, What dose and qty was your first spot radiation to those? Not really the same, but I was told the same thing on a rib met, but decided to get it done twice to the same spot… What was your PSA...
Hi Redwing… Yes…I’ve used those patches in the past as well…makes sense…...
Mattam - The spot radiation I’ve had were always done in combination with other therapies. So, I never really knew if it had any direct impact. The PSA would come down and scans would be better...
Everyone is so different and I don’t think there is a right or wrong answer to the intermittent vs. continuous hormone therapy. So far, I’ve gone down the intermittent road and it’s gone something...
Hey Mr. Bill - are they tender/sore? That seems to be a common side effect as well… And why can’t meds have positive side effects…ugh...
I would check the order…and I’m curious what others are seeing as well…the code for all of my f18 sodium flouride pet/cts were 78816 (Full Body)…I think for my PSMA it was 78815 (skull base to mid...
Hi Mel, I had this scan done last September. It is similar to other PET/CT scans. You’ll get an injection, wait about 45 mins, and then the scan….the scan takes another 35-40 mins… is not a full body...
I’ll have to fix some formatting it appears, but I’ve had to visit the train a couple of times in the last few years so I’m working on some other chapters to this …. Here is Part 3....
True…but I think PSMA is expressed in approximately 90% of prostate malignancies, making it an excellent imaging and a target for prostate cancer....
Cyclone… Love the Bob Ross reference… I’m sure I’ve had my fair share of “happy little mistakes” along the way…...
Jerry - not sure if this is an option, but did you see that this was approved today? https://www.urologytimes.com/view/fda-approves-177lu-psma-617-for-psma-positive-mcrpc Thinking and praying for you…...
Awesome…thanks for the update…...
That was sad news for sure. I enjoyed many of his movies....
This is somewhat related, but a bit different. My PSA has been rising for a while so I got a PSMA scan at about .2 which didn’t show anything. My PSA went up to around .45 and instead of going back...
Mal, Thanks for checking in. Sounds like that plan has worked great over the years. Sort of my strategy over the years as well…I’m on 12+ years into it and have been able to get good years of normal...
A pivotal Phase 3 trial has shown that a new combination treatment can significantly reduce the risk of death among prostate cancer patients by almost 33%. Results from the Phase 3 ARASENS clinical...
The first shot(s) of Firmagon are not fun. But it will get better in a few days. Hang in there…and then the monthly shot is only half as bad....
Dana Jennings was diagnosed with G9 PC around the same time that I was. I followed his articles for a time and I have wondered what he has been up to since. So, thanks for posting this. His story...
Thanks for the update…glad that the insurance covered it….take care…...
Mr. Bill - that’s pretty funny… I have a story you might appreciate given where you used to work if I recall correctly… Because of Covid I work a lot from home. As an IT guy for a large police...
The tracer will be circulated throughout the whole body when he is injected…I’m just saying that I think the normal Pylarify Pet/CT uses procedure code 78815…I’m not sure why they don’t scan the...
Melaine, Let us know how you make out… I’m curious about something with the Pylarify scan…on the order, does it say full body or something that is not the entire body…I’m just curious if it is skull...
Melaine, Given that PSMA scans are approved, locally available, and and I’m able to get these approved by insurance…I’ll probably use this type of scan moving forward. About the PSA doubling time -...
FWIW - I found bone mets at a PSA of .09. But I am a Gleason 9….so each case is different and we all need to do very different things based on our Gleason score, psa, history, etc…...
Hi Melaine, As Mumbo mentioned, the Pylarify PSMA scan has recently been approved and is beginning to be available across the country. Check with your local medical and imaging centers and ask...
Hey Mel, I got a Pylarify PSMA scan back in September in PA…but at the time I saw a few other places in the US that were offering it. This particular scan should be commonplace across the country...
Yes…thank you all who make this site possible…it has helped more people than any of us will ever know…Happy Thanksgiving everyone…...
Saw her as well on AGT…quite the inspiration…thanks for posting…...
The link that Redwing created is great…it is extremely helpful to know that you’re not the only one dealing with this type of PC. Redwing-thanks for creating and maintaining that link…it’s been...
BillyBob, I got my PSMA on 9/17/21 and just saw the EOB. My out of pocket was like $200. It was at UPMC in Harrisburg, PA… Where again are you trying to get this done?...
GMAN, Welcome to Healing Well…it is a great place for support and information all things PC. I was young as well when diagnosed…I was 44…Gleason 9…surgery and radiation and then bone mets a year...
ShawsUnreasonableMan - I have been fortunate over years…I’ve had some great doctors…and it’s been a wild ride…I’ve wanted off this roller coaster ride a long time ago…but since I can’t … I just make...
My brain cross circuits with one dimensional chess let alone multiple layers….and there is also multi player chess…that I always wanted to try… I’ve had several sodium fluoride f18 per/ct scans and...
Neat article and good for him for putting his talents to good use. I do play chess…I’m an average player…but I have always viewed my fight with PC as a chess match. I have been fortunate to have...
I was able to get a Pylarify PSMA Pet/CT a few weeks ago…and preauthorized by my employer’s insurance. This will be widely available across the US in the weeks/months ahead. And the treatment that...
Great point…Good for you for being so involved in Jeff’s plan…...
I find ads, including the video ads, annoying…in some cases, it makes viewing the content almost unusable…but I’m sure it’s all about the $....
Stephen, Being diagnosed rather young comes with unique challenges that’s for sure…shoot me an email if you’d like and we’ll compare our stories and stay in touch…...
Thanks Stephen for the update. Kind of a mixed feelings I bet…You want to find something, but on the other side…nice that it didn’t show anything. Plenty of options to go over with your doc… My doc...
Stephen, Good for you…great attitude…let us know… I was in a PSMA trial a few years ago at NIH. They did two scans at the time. A PSMA and a Sodium Flouride f18 pet/ct for comparison. Ironically, the...
Thanks for the update…long day I’m sure…best wishes…...
Just curious, how much is the annual membership fee? I remember how much Myers cost back in the day…very expensive…but I did like him a lot....
Update: I called their Telehealth section and found out that the restriction is only for new patients. Existing patients can still do virtual visits even outside of the state…so contacted the doc’s...
Steve n Dallas - Thanks…so is that a PA or NY thing…meaning, I think that the doctor had a special Covid exception to do this the last several months…so is that a PA law/policy or a NY law/policy...
Ever since Covid I have been able to have virtual appointments with my oncologist. Their office is saying that he can no longer provide telehealth services to states where he is not registered. I...