I have not been following regularly, so I'm a bit late to the party. I was on Orgovyx for 6 months Jun - Nov 2021. I gave an accounting of my experience in this thread...
My reason for choosing Proton was primarily due to an unusual unrelated health issue combined with the overall treatment plan offered by MPTC. Secondarily was the idea of being treated at a major...
WRT cost of Proton treatment, I was treated at the Maryland Proton Treatment Center, and was told that because they are associated w/ the UofMd Med center, they are required (due to state funding?)...
Thanks, good to hear. I have a consult w/surgeon in a few weeks....
Has anyone here had an inguinal hernia repair after primary radiation (no surgery) for PCa? Any issues w/scarring from RT complicating the surgery?...
I had sessions in the early afternoon. The bladder regimen that finally worked for me (figured it out around the last week of RT) was as follows. When I first got up, drink about 32 oz of water to...
I have been reporting on my experience w/Orgovyx on a separate thread, but regarding T recovery - I was on Orgovyx for 6 months adjuvant therapy w/PBT from June through November 2021. T prior to ADT...
WHY USE BOLD WHEN CAPS LOCK IS SO MUCH EASIER?...
I started a thread back in Sept '21 with my experiences on Orgovyx https://www.healingwell.com/community/default.aspx?f=35&m=4266203 , but let me summarize here and provide an update since my last...
I was in a Phase 1 trial to test 20/16/12 fractions of proton therapy to find the maximum tolerated dose ( https://clinicaltrials.gov/ct2/show/NCT04486755 ). I was in the 20 fraction cohort (315 cGy...
I started programming computers in high school. The best job I ever had was the 18 months I spent writing games in Assembly code for the Mattel Intellivision until Mattel Electronics went out of...
He recently announced that he is stepping down as Department Chair, but will continue seeing patients. Back in May, after I was diagnosed, I had a consult with him. We had only gotten a few minutes...
Happened to me once - had a UTI - scared the bejeezus out of me. PCP seemed unconcerned, said it would go away. It did....
It is now 6 weeks after completing 6 months of Orgovyx. Had some bloodwork done for PCP to check if lipids/sugar etc had recovered from ADT. Numbers are pretty close to my last physical before my PCa...
As they say, "Any car can last you a lifetime, if you are careless enough." I guess you could say the same for PCa treatment - just take up Bullfighting, Freediving, or BASE jumping after your "one...
My suspicion is that some of this non-information comes from the stovepipe nature of medical specialties. To at least some extent, and to be gracious say subconsciously, oncologists want to keep you...
When I was starting my treatment plan (definitely with curative intent), my RO sent me to a Uro (to place fiducials) and a MO (to prescribe the ADT). I have not seen the Uro since then, but have...
I was on Orgovyx (Relugolix), which like Firmagon (Degarelix) is a GnRH Antagonist but in pill form (as opposed to Lupron and Eligard which are GnRH Agonists). Anyway, after 5 weeks of Orgovyx my PSA...
Does one even have seminal words after RP?...
Almost 3 years ago, while being prepped for surgery for a small bowel obstruction, my ECG showed I was having a 'heart attack' that wasn't. Instead I was later diagnosed with Brugada Syndrome (BrS),...
Going through the bladder rather than the abdomen is all well and good, but how do you get the robot into the bladder? Is this like "Fantastic Voyage" - Life imitating art?...
Last night was my last dose of Orgovyx! My RO check-in is tomorrow and blood tests last week show undetectable levels of both Testosterone (<3) and PSA (<0.1). In the HERO trial, 54% of men had...
I believe that studies in cases like this show no long term advantage to prophylactic ART vs waiting for BCR and doing SRT. Certainly worth more investigations and questions if it comes to that....
Hi Jack62, In my case I felt like the "do nothing" feel of the radiation treatment was the perfect complement to the "feel nothing" diagnosis. Somehow I am supposed to believe I have potentially...
During my early visits w/my RO I asked about SpaceOAR and was told that due to my EPE he would not use it. He said there was a risk that the gel might push some of the external cancer cells out of...
I have been on Orgovyx for 5 months 10 days (I have 20 days left on my 6-month sentence). I have been fortunate to have few severe side effects. ED, and loss of libido mostly, also some issues with...
Just had my MO follow-up. PSA < 0.1 (no T test done). When I first met with the MO, he chose to treat my PCa as UIR, rather than the HR that would be indicated by my T3a staging. Thus the plan was...
I have been on ADT (Relugolix/Orgovyx) for 4 months now, and it has been quite effective wrt T & PSA. I just had my annual physical and was pleasantly surprised to find that my total cholesterol was...
Hi PP & Welcome! If you are being treated at Hopkins, are you in the Baltimore area? I am as well, although I ended up choosing Proton therapy at the MPTC due to a variety of reasons. There are many...
Just, whatever you do, don't cry "Oncol!"...
My wife went on Medicare earlier this year, and after look over many many choices for Part D it seemed that Wellcare was the best deal for her particular meds (she has chronic migraines). We have...
Well, best of luck on your biopsy, but in this case I'm not sure what "good luck" looks like. If the cores are all negative, will you still feel anxious that there is something there that they...
Orgovyx (Relugolix), a newly available daily oral ADT drug, is supposed to have fewer coronary problems than Lupron. Plus, since it is a daily pill, you can simply stop if you find it affecting your...
Thanks Cyclone. And I must say I am impressed and inspired with how you keep up with everyone's story and spout encouragement in an everflowing stream! I was first made aware of Orgovyx by the RO...
YES!!! I am not on Lupron, rather Orgovyx, but I have also been having problems with insomnia. Mostly I go to bed around 10pm and have no problem getting to sleep, but I often wake up between...
I just got back my Decipher score, it is 0.54 which puts me in the middle of "Intermediate Risk" with 4.1% and 8% risks of 5 and 10 year metastasis. I was diagnosed in April w/stage T3a PCa w/ GS...
The weight information was from my annual physical last week, the doctor has a fancy scale like this https://consumer.inbodyusa.com/products/h20n and I received a full page analysis of weight,...
I now have 3 data points on ADT (Orgovyx/ Relugolix) - May = pretreatment; July = 5 weeks ADT; September = 14 weeks ADT & Completion of 5 weeks PBT. Testosterone May 734 July 6.1 Sept 3 PSA May 6.6...
Hi Jeffrey, welcome to HW and to the club to which none of us ever desired an invitation. You have come to a great place for information and support. I am sure this news has come as quite a shock and...
BaMAc, I would like to expand a little on Terry's comments. SBRT is really just one style of external beam radiation where the use of ultra-precise aiming techniques allow the use of very high doses...
Hello BaMAc and husband, welcome to our cozy little club. No, I didn't want to be here either, but that's the way it rolls. It was only back in April when I was where you are now, it is very...
Oh so ironic, to have a kernel so finite and a name so infinite....
Evolutionary trends would only happen if there is a significant increase in survival before reproduction. Since BPH and PCa primarily affect men well after the majority of their child generating...
I am feeling fine - the rash is about the same and is still only slightly itchy, but I have no loss of energy, headache, fever, muscle aches etc. In fact I just finished putting up my Sukkah....
A few more things you may wish to ask about prior to your biopsy. 1) Transperineal vs Transrectal approach. Transperineal is less common in the US, but has much lower risk of infection and can...
Yes, I have been in touch with my doctor since Thursday, and this being a reaction to the vaccine is only one of several possibilities....
Three months on ADT and my nuts are a shell of their former selves....
I do not eat shellfish at all...
I too initially rejected an allergic response to the vaccine as the cause, being 3 days later. But there seems to be a delayed reaction to Moderna colloquially called "Covid Arm", (...
Hi All, I am looking here to see if anyone has experienced anything like this, or if I am just special. This past Sunday I got my Covid booster (Moderna), and had a sore arm for a day, same reaction...