Dr Mark Scholz/PCRI

Posted by ava11 @ava11, Nov 24 11:10am

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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@kvnbysea

That’s impressive that you’ve had no loss of muscle mass or increased fat mass! I aspire to that. I have a localized Gleason 8 PSMA Pet negative and close to choosing between RP + ADT vs IMRT+Brachy+ ADT. Initially my radiation oncologist Dr. Sayed (Memorial Care) said he was on the fence whether he’d recommend ADT since he wasn’t sure if get much benefit. I’ve just recently learned about the Decipher test and am in the process of ordering it. Did you start out with Lupron? This is what he’s suggesting now. He changed his mind and thinks I should do 1 Lupron shot 5 weeks prior to radiation then another 3 months post radiation perhaps with Orgovxy.

I’m concerned about long term ADT and my workload (consulting) as well as all the other side effects. Any insights are appreciated.

My other option is RARP using the Davinci single port with Dr. Moses Kim at Orange County Urology with 6 months ADT.

I’m leaning towards surgery because I already cystitis and chronic bladder and urinary pain with concerns about potential secondary cancers or tissue damage. I’m 60 and single.

Again any insights are appreciated.

Thank you

Jump to this post

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.

REPLY
@jeffmarc

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.

Jump to this post

Thank You Jeffmarc. Your posts are always informative and helpful.

REPLY
@cooper1076

I feel blessed that Dr. Scholz is located near me and I will try to set up a consult with him immediately. Thank you so much!

Jump to this post

Please do! Expensive but worth it.

REPLY

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!

REPLY
@ava11

How about Dr John Shen MD Medical oncologist, UCLA. He comes to Encino, less than 20 miles from Thousand oaks.

Jump to this post

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.

REPLY

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.

REPLY
@retiredboomer71

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.

Jump to this post

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

REPLY
@hbp

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

Jump to this post

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.

REPLY
@dmougey

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.

Jump to this post

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?

REPLY
@jeffmarc

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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.