Looking for any Info for Recent PC Diagnosis

[Iber]

I’m a 62 year old, recently diagnosed with advanced prostate cancer. I’ve been on hormone therapy for 2 weeks and see my oncologist in a week. My PC seems to be aggressive and my PSA is off the charts 885! I would love any positive info I can get.

[Tall_Allen]

What are the particulars of your diagnosis other than your PSA? There's nothing in your profile.

[Iber in reply to Tall_Allen]

sorry will update following my MO appointment.

[NanoMRI]

reasons for positivity, heck yes!! Today you have many investigative methods and treatment options. Mine was missed then under diagnosed, over nine years ago. Four treatments done, no long-term ADT, no evidence of disease progressing, very fit and active, celebrating my 67th and my grandsons 8th this holiday weekend. All the best!!!!

[RyderLake2]

Hello,

Take a deep breath and then make some positive decisions. First, you need a good oncologist, someone who is aware of current PCa treatments. Second, you need to educate yourself about this disease so when you make decisions (and you will) you make good decisions that are based on research and are supported by both you and your doctor. Third, involve your wife or significant other. Have her take notes. I can't tell you the number of times I have heard one thing in the doctor's office and she has heard something else. Finally, you are in a battle never, ever give up.

My PSA at diagnosis was 1700 with a Gleason of 8. I was told by my urologist that I had metastatic prostate cancer and less than a year. That was over eleven years ago. Since that time I have been on Zoladex, Firmagon, and back to Zoladex. When my PSA started rising after five years I was offered an ARPI (Androgen Receptor Pathway Inhibitor) drug. The choice was between Xtandi (enzalutamide) and Zytiga (abiraterone). I chose Xtandi. Another five years went before my PSA started rising again. I was switched to Zytiga plus Prednisone. I am currently on a clinical trial investigating Lutetium pre-chemotherapy

[Tinkudi in reply to RyderLake2]

did you have bone mets at diagnosis ? You were only on single ADT for 5 years before they added an ARPI ?

[RyderLake2 in reply to Tinkudi]

Hello,

I certainly did. Numerous bone metastases from my knees to my neck. In my situation the horses were definitely out of the barn so no prostatectomy (surgery to the prostate gland) was recommended. I was not offered brachytherapy, (the radioactive seeds around the prostate) either. Instead I was put on ADT systemic therapy (Zoladex) and Prolia (a bone strengthening drug) right away. The Zoladex as a monotherapy worked well for five years until it stopped being quite as effective. I am still on Zoladex but now it is combined with other drugs. Hope that helps.

[Tinkudi in reply to RyderLake2]

Thank you 😊. Mostly they put on doublet therapy soon right ? Was there any reason your MO decided to go with just single ADT for so many years even with bone mets and high Gleason ?

[RyderLake2 in reply to Tinkudi]

Hello,

Three reasons. First this was eleven years ago and they did things somewhat differently back then. Second, my response to Zoladex and one year of Firmagon was quite remarkable. Third, my oncologist at the time was a radiation oncologist and to add an ARPI drug like Xtandi or Zytiga to the mix meant switching to a medical oncologist and my RO wanted to try everything in his tool box before doing that. Hope that helps!

[Tinkudi in reply to RyderLake2]

Thank you 😊. I wish you many more years of good health.

Did you have radiation?

Any reasons why you chose xtandi over zytiga. Have to make that choice for dad too.

The prolia is 60 mg Denusomab I believe Do you have it once in 6 months Dad has osteoporosis and bone mets and the doc has written prolia once in 6 months I wonder if that’s a good enough dose

[RyderLake2 in reply to Tinkudi]

Hello,

To answer your questions. Yes, I had radiation very early on in my PCa journey. First to my lower back which was tolerable but then when I had radiation to my upper back I was not able to swallow for a couple of weeks. Everything I ate had to be made into a smoothie. I initially chose Xtandi over Zytiga mostly because it didn’t require Prednisone. When the Xtandi began to fail I was switched over to Zytiga plus Prednisone for about a year before it too started to fail. Finally, I too am on the maintenance dose of Prolia, a 60 mg injection every six months. I have been on it for about ten years. That should help with your Dad’s osteoporosis and prevent any SRE (skeletal related event). Probably a good idea to start your Dad on a lower dose and see how well he tolerates it. Let your oncologist make that decision.

[JohnInTheMiddle in reply to RyderLake2]

Rider your comments are astonishing. Certainly urologists and radiation oncologists are sometimes an important part of Team PCa.

But metastatic prostate cancer is a body system-wide biochemical problem, as Tall Allen keeps pointing out.

I'm reminded of the aphorism that "when all you have is a hammer pretty soon everything begins to look like a nail".

Where metastatic prostate cancer is concerned I prefer the medical oncologist. Rather than the mechanic or the physicist.

[RyderLake2 in reply to JohnInTheMiddle]

Hello,

I appreciate your comments but the reality (for me) was that my PSA plummeted from a little over 1700 to almost undetectable just on Zoladex. An amazing response. It also stayed that way for five years. When my PSA started to slowly climb I was switched to a medical oncologist and given a choice between Xtandi (enzalutamide) and Zytiga (abiraterone). At every step in my journey I have been very fortunate to have first class medical attention. The clinical trial I am on now involves blood tests every two weeks as well as CT and Nuclear Bone Scans every eight weeks. The clinical team watches me like a hawk. It doesn't get much better than that and I consider myself very fortunate.

[JohnInTheMiddle in reply to RyderLake2]

Great results Ryder! I do have one question for you because I have an annual CT full body scan coming up. If you're having CT every 6 weeks, is that an issue in terms of the amount of radiation? If our life expectancy a few years ago was only a few years - not such a big deal I guess - but now that life expectancies seem to be going up, is this a concern?

[RyderLake2 in reply to JohnInTheMiddle]

Hello,

The scans are every eight weeks but the clinical trial team does not seem to be overly worried. The radiation from the scans pales in comparison to the amount of radiation injected into my body through the Lutetium infusions. We bought a Geiger counter when we started the program and the device goes crazy after each infusion. Between beeps the Geiger counter tells me to "Get out of the house" and "Get out of the house immediately". My favourite is when it tells me to "Contact the government!" 😊 No side effects and the Lutetium has brought my PSA down substantially. The down side is spending a week confined to the basement and having very little contact with friends and family. However, for me that is small price to pay. It gets easier every time it is done and I only have one more infusion to go.

[JohnInTheMiddle in reply to RyderLake2]

Bravo Ryder! I made a joke to my wife recently, when I had an injection for the SPECT scan, about Geiger counters. (It seemed like a real situation - the prepared injection was stored in a brightly painted lead tube standing up - and the actual injector was in its own small lead tube that the nurse used to handle it - but this is small potatoes compared to Lutetium!)

Anyway you're a good storyteller and I was almost tempted to laugh when reading your note about the Geiger counter. Okay maybe I laughed 🙄

[NewGame in reply to RyderLake2]

Hello -

I’m starting the Lutetium pre-chemotherapy clinical trial and have my first infusion the beginning of August. I’m crossing over from the control arm due to disease progression. Has the drug worked for you, and have you had any salivary gland issues? Has it caused fatigue? There are currently so many schools of thought out there regarding Pluvicto and its efficacy, I’m a bit overwhelmed by all the divergent opinion.

Thanks

[RyderLake2 in reply to NewGame]

Hello,

Everyone is different and Lutetium is not the “silver bullet”! I am sure you have heard that for 1/3 of men who take it the results are miraculous, for the next 1/3 the results are so-so, and for the last 1/3 it doesn’t work at all. I must be one of the lucky ones because I have had no side effects. I have a supply of throat lozenges that I take to counteract dry mouth. The only downside is the week of being highly radioactive and having minimal contact with wife, friends, and family. For me this is a small price to pay. Hope that helps!

[NewGame in reply to RyderLake2]

My info says I have to be away from people for two days after each infusion. You keep your distance for a week.

[RyderLake2 in reply to NewGame]

Hello,

The nuclear medicine doctor that checked in on me prior to my infusion said if you share a bed with your spouse you should remain isolated for a week. Also we bought a Geiger Counter after the first infusion and until the readings show normal levels of radiation I stay in the basement and limit my contact with friends and family.

[NewGame in reply to RyderLake2]

Thanks for your help - much appreciated.

[NewGame in reply to RyderLake2]

this was meant to be a question: you keep your distance for a week?

[JohnInTheMiddle]

New visitors to this thread: "Read again everything from the posts above!"

My own PSA on diagnosis was also around 1700. That was almost two and a half years ago. And where I wasn't doing so great at the beginning I'm now doing pretty well.

Good thing you're having an appointment with an oncologist. And when you can please post in your bio. a good start could be explaining why and how you were diagnosed? Urinary problems? Backache?

Mainstream therapies for prostate cancer have vastly improved over the past half decade.

[billyboy3]

Rock on, LIVE LARGE my friend, I am at 26 years and counting!

[P3Nav]

Hi Iber, don't forget that initially, the ADT shots cause a spike in your PSA, then you typically see it go down bit by bit. I actually welcomed the side effects such as hot flashes, decreased body hair, fatigue, moderate depression and such as signs the drugs weren't placebos but more like merciless destroyers/starvers of PC!

[JohnInTheMiddle in reply to P3Nav]

P3 - the testosterone spike (a "flare") and the subsequent downstream PSA spike from initial ADT only happens if your ADT is a "GnRH agonist". This is the most popular ADT and typically it's Lupron or something like that. The idea is that we will overstimulate testosterone production until the whole thing burns out.

However for people who have dangerous metastases, for example pressing on their spine, you don't want the testosterone flare. So you have ADT instead as a GnRH antagonist. This is commonly injected (monthly) Firmagon / Degarelix or the new oral Orgovyx/Relugolix.

Doctors have a prejudice in favor of ADT-as-GnRH agonist it seems. Everybody gets Lupron. It's more convenient because the injection can be every 3 months or every 6 months even.

In my case, I rejected my doctor's enticement to switch from Firmagon, which I started with, to the more convenient Lupron, as time had passed.

ADT selection should not be just a question of convenience, although that's what it's usually presented as. There is research that indicates that GnRH antagonists may be healthier in terms of CVD side-effects than GnRH agonists.

I agree with you about putting up with the side effects of ADT, because it's the foundation of life-saving PCa therapy. Although being on the GnRH antagonist, it seems to me I have fewer side effects. I don't get hot flashes. Although I am fatigued like everybody else.

Don't forget to exercise! It's not only good for you and your cardiovascular system, but apparently exercise also helps fight cancer!

[lcfcpolo]

Starting PSA 1311, just over 4 years ago. Best wishes to you. Exercise and de-stress (I know that is easier said than done) so if necessary reach out to a pastor or therapist.

[85236442968]

Iber

To start with best wishes on your Journey, we are all on similar journeys, but our specific paths are varied.

If you have not had any imaging yet, please ask when it is going to be done. A Multiparametric MRI is for looking at the Pelvic area. A Pet Scan looks at your whole body.

Both are standard practices and help with treatment plan design.