Dr Mark Scholz/PCRI
Anyone here is a patient of Dr Mark Scholz of Prostate Cancer Research Institute. I need to get a second opinion from an Oncologist about how long I should be on Orgovyx based on the risk/benefits. I would on Orgovyx for 9 months end of December.
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I had a computer consulting business and took four days off to have surgery. I didn’t do a whole lot on the fourth day after surgery just sat down in a few computers and fixed some issues, But I was able to do it and get to multiple offices that day. I was not on Lupron, however.
Starting on Lupron before your treatment is a good idea. I know a lot of people that did that before radiation and in many cases, the size of their metastasis reduce. It also stops your cancer from growing.
The side effects of Lupron vary A lot. I never had Much fatigue and was on it for seven years. I did have a lot of hot flashes, Muscle deterioration and brain fog. If you get a lot of fatigue come Back to the forums and we can help.
Not everyone gets a lot of hot flashes, if they bother you a lot come in here and we can help you Reduce the effects of them. The muscle deterioration could be offset by going to the gym regularly doing weight training exercises, and walking a couple of miles a day at least. The brain fog doesn’t start right away, but there’s not a whole lot you can do about it. Doing a lot of exercise can also beat the fatigue, see how it works for you.
The radiation can affect your bladder. If you’d get something like MRIdian Radiation it can reduce the amount of tissue affected around the area that is being treated. Surgery does avoid that problem.
There are other options beside surgery and radiation. HIFU, cryotherapy, TULSA-PRO and more options are available. They would avoid damaging your bladder, You can look into whether one of them makes sense for you.
Thank You Jeffmarc. Your posts are always informative and helpful.
Please do! Expensive but worth it.
If you want to get a second opinion, I suggest dr. David Lee MD at UCI Heath. He had one lots of Robotic surgeries. He did the biopsy for me and suggested that radiation is a better option in my case, because of my age.
And, he didn't push UCI Radiation oncology!
Dr John Shen UCLA was my Oncologist until very recently. Great doctor, but he got a new job & promotion (Director? ) so he said I'd have to work with another Oncologist.
Make sure you get on Venlafaxine 37.5 mg. It takes care of the hot flashes in a couple days. I had those hot flashes the first couple weeks and with that pill, they were gone. Last psa was 0.17, 28 radiation treatments ended in May, been off that awful orgovyx for about 4 months. Just now things have grown back to normal size, almost, and function again, differently though.
I met John Shen at UCLA hospital in Westwood and I thought that he was great. I was going to ask UCLA urology director, Dr Robert Reiter, to refer me to him as I am 40 months past original diagnosis of G 9, CR locally advanced aggressive PC and I suspect that my PSA will increase soon. I am meeting Dr Reiter in 10 days. Since surgery and a year of Erleada and lupron my PSA has been .01. Good luck in getting a new great UCLA oncologist and I would greatly appreciate you posting your progress in this doctor search!
PS. Nick Donin was my UCLA surgeon and urologist but I am thinking that it is time for a full time oncologist who does not do surgeries
If your PSA remains that low, you really don’t need to do anything but wait, and get regular PSA tests, A Gleason 9 Can be difficult to hear, but some people with That diagnosis can go a long time without recurrence. Never hurts to line up a doctor to treat you when it does rise, but I’m sure they will tell you it’s no time to panic with your continuing low PSA success.
If you are worried that your cancer is not producing PSMA, And as a result, your PSA doesn’t rise, You can get an FDG Pet scan, which would show if there is an issue.
Venlafaxine (Effexor) has been mentioned by members in the breast cancer group too for managing hot flashes. It is a potential option that can be helpful. I'll also add that venlafaxine is an antidepressant, serotonin and norepinephrine reuptake inhibitor (SNRI). When you no longer require the drug, please be advised to taper slowly to avoid withdrawal symptoms.
@dmougey, welcome. Now that you've been off Orgovyx for 4 months, have you begun to taper off venlafaxine? How are you doing with hot flashes?
jeffmarc,
You seem to be pretty knowledgeable about Prostate cancer. I just got my Ultra Sensitive PSA test results. It is 0.05 after being on Orgovyx for 8 months(Started on April 1st). My last of my SBRT treatment was on April 18th. My previous PSA was 0.06 on October 7th. In 8 weeks it dropped by 0.01.
The only side effect I really feel is low energy. There were some changes in biomarkers, but nothing terrible. In spite of Dr. Schulz's advice, I feel like I should continue with my engineering mindset until my PSA stops decreasing or I am feeling really terrible!
What is your opinion? Any one can chip in, of course.