Finally!!!: Finally, after nearly a... - Advanced Prostate...

Advanced Prostate Cancer

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Finally!!!

jcoil profile image

Finally, after nearly a year after diagnosis with stage 4 PCA, DC has reached “within normal PSA levels” at 3.3! It’s been a long and winding road and one heck of a roller coaster but I’m happy to say he is on a good path for now. I understand “for now” is a fluid term. I am praying he can stay here for a while to let his nerves and his mental health unwind. He is a pessimist, always has been since he was little, so keeping his spirits up and positive has been my personal struggle. The doctor can tell him he is doing great, we all can for that matter, but every time he gets up to pee, he contradicts us in his mind. I am working on him to keep moving, do his strength exercises, eat high potassium foods. He is listening for once! You CAN teach an old dog new tricks…imagine that!

Be well and Happy Fathers Day to all you wonderful, beautiful dads out there!

All of you, fathers or not, are loved and cherished beyond words. Keep up the good fight Warriors!

22 Replies

Does he have low serum potassium? Is he taking Zytiga+prednisone? If so, he may not be taking enough prednisone. Don't overload him with dietary potassium if that is the problem.

Schwah profile image
Schwah in reply to Tall_Allen

TA, Why do you say “ overload him with dietary potassium? I’mOn Zytega and prednisone and My potassium level went to 3.1. Dr Scholz had me take potassium supplements. I’m back up to 3.6. Is this the wrong thing to do in your opinion?

Steve s

Tall_Allen profile image
Tall_Allen in reply to Schwah

The reason one has to take 5 mg prednisone with abiraterone is to replace the natural cortisol that the adrenals produce. Without enough prednisone, one gets a condition called "syndrome of secondary mineralocorticoid excess." The symptoms of the syndrome are high blood pressure, low potassium, and edema (retaining water, especially in the arms and legs).

prostatecancer.news/2019/06...

Supplementing potassium won't help because low serum potassium is the symptom, not the cause - your body will just get rid of it. Excess potassium can cause cardiac arrhythmias and muscular weakness. But 5 mg prednisone/day is an estimate across all men - some men may need a little more, some men may need a little less. There was a retrospective study trial that suggested that Inspra (eplenerone) might help.

Schwah profile image
Schwah in reply to Tall_Allen

This link below specifically says that prednisone can lower potassium. Are you saying that’s not the case when it’s used with Zytega?

Dr. Scholz specifically prescribed potassium supplements and they increased my potassium levels back to normal range (from 3.1 to 3.6) . You say “Excess potassium can cause cardiac arrhythmias and muscular weakness”. Could I have “excess potassium” from the supplements even tho my blood tests now show only 3.6 levels? Are you suggesting I increase my prednisone vs the potassium supplements?

Do you have a link I can show Scholz? This is very confusing TA.

stjude.org/treatment/patien...

Schwah

Tall_Allen profile image
Tall_Allen in reply to Schwah

Prednisone taken to replace lost cortisol because of Zytiga does the opposite of what extra prednisone does without Zytiga (as in your link). This is because cortisol levels are tightly controlled via negative feedback by the pituitary. If there is not enough cortisol (because of Zytiga) or not enough prednisone (biosimilar to cortisol) is taken with Zytiga, the pituitary reacts by producing Adrenocorticotropic Hormone (ACTH). ACTH increases the production of mineralocorticoids (like aldosterone), hormones that increase blood pressure, lower potassium and cause edema in the limbs. Too much cortisol (or prednisone) causes the same symptoms.

In the chart in my article, you see that, among men taking 5 mg every day, 7% suffered Grade 3 hypokalemia (low potassium). Many more were grade 1 or 2.. There was no grade 3 hypokalemia among men who took 10 mg every day. Maybe the right dose for you is 7.5mg?

All the links are in the article.

Schwah profile image
Schwah in reply to Tall_Allen

Shocking that you know more than many MOs that do this every day. Thank you so much!

Schwah

Grandpa4 profile image
Grandpa4 in reply to Schwah

If you MO does not know everything TA said then you need a new MO. This is standard information. The only complicating feature might be if you are on a diuretic for BP control. Then adding potassium might make sense

PSA measurements against 4 are only meaningfull before treatment.

Note 4 isn't a safe measurement either.

Velocity of change in PSA is a much more important factor. Free PSA as opposed to normal PSA is a important factor.

And ANY increase in PSA on proscar finesteride or Propecia needs to be looked at by a urologist right away.

Don't rely on PSA being less than 4 as proof that your safe.

Once PC is in your body outside of the prostate there is no safe level.

PSA of 3.3 is not “within normal levels” for men who have received treatment. Stable at 3.3 is good news when it comes to managing the disease, but it’s the “stable” part that’s important. If you cannot reach undetectable levels, then stable as long as possible is the next best thing.

Grandpa4 profile image
Grandpa4 in reply to cfrees1

What if he was treated with radiation instead of prostatectomy. Don’t those patients have a PSA level after therapy. 3.3 still sounds a bit high.

Agree. If you’re being treated for Pca , your urologist or oncologist knows that 3.3 is not within normal limits. That is for guys who don’t have Pca . Psa doubling time , aka velocity, is THE most important measurement once you’ve been dx with Pca. The fact that he’s stable at 3.3 is a good thing but he has Pca in his system which requires treatment and his doc knows this.

jazj profile image
jazj in reply to Break60

"The fact that he’s stable at 3.3 is a good thing but he has Pca in his system which requires treatment and his doc knows this."

This seems like a bit of an oxymoron on it's face as it begs the question what if your PSA stays exactly the same the rest of your life whether it is 1, 3, 5 or 10? I was under the impression once your PSA stops rising in the absence of an active treatment, then there's no need for further treatment. But in Advanced Prostate Cancer that is probably an extremely rare occurrence?

Break60 profile image
Break60 in reply to jazj

It’s not likely to stay at the current level. Pca keeps growing if not stopped. You’re not being realistic!

MateoBeach profile image
MateoBeach in reply to jazj

Sorry,, but that is not true at all. “Normal PSA” of 2 to 4 is applicable to men with no known prostate cancer, who have had neither radiation nor surgery to the prostate and are not on any hormonal treatment for PC such as ADT and or Zytiga, etc. Rather, with known APC present, the PSA level is a marker of prostate cancer activity and growth. You want it to be as low as possible, preferably undetectable, for as long as possible. Decreases are a good sign and increases are worrisome and may call for changes in treatments. 3.3 by itself is not bad but also not reassuring. Must stay on top of it. It is a nasty and sneaky disease so we must remain vigilant and willing to adapt to its changes.

Hope this makes sense for you and is not confusing.

Break60 profile image
Break60 in reply to MateoBeach

Maybe I misunderstood. I thought he does have Pca and has been treated.

MateoBeach profile image
MateoBeach in reply to Break60

Yes eclesiástica deed. But she appears to be interpreting the 3.3 PSA as normal, as it could be for someone without APC. Just trying to bring proper perspective,not to rain on the parade.

TO Mr. Jcoil,

The pessimist says, " Things could not get worse."

The optimist says, " Oh yes they can."

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/20/2022 6:29 PM DST

Mascouche profile image
Mascouche in reply to j-o-h-n

So funny heh heh

j-o-h-n profile image
j-o-h-n in reply to Mascouche

LOL

Mascouche = City in Québec, Canada. Adorable picture of your daughter who's now 20 with a tattoo and you're a good looking guy too. Stay Well.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/21/202212:41 PM DST

I just got my PSA result yesterday. After 13 months on Eligard my PSA is down to 9.2 from 130. Last month it was 13. The month before 26. My General Practitioner says although its not great its going in the right direction. I still have a prostate with has had no radiation.

I know people here get very anxious when their PSA goes from 0.01 to 0.02.

Should I be worried with PSA still around 9 after 1 year of 'treatment'?

Im metastatic and had Docetaxel last year. It didnt work very well in terms of PSA reduction.

Is it unreasonable to expect PSA to go to 'undetectable' levels if I still have a cancerous prostate? Would should be the lower limits of PSA measured if I have a prostate?

pakb profile image
pakb in reply to jac_j_sp

My husband's PSA has just reached below 2 for the first time since treatment started almost 5 yrs ago. He's had a slow but steady decline from over 677 at diagnosis. He was Gleason 9 with mets at diagnosis and has never had radiation to his prostate. Chemo, adt, zytiga and spot radiation to a net on his t4 this year. His docs have said that as long as his scans look good and his PSA continues the downward trend (or doesn't rise) they are thrilled.

Maybe I got a little too over-zealous in my initial post. Just to elaborate, the MO didn’t say he was within normal limits, those were my words. I see his lab results and I see the expected level range between 0.0-4.5 so I got really excited. I know there is more to come and I’m hoping we can get to undetectable levels sometime soon after the next 1-2 Lupron shots. I’m not sure if the Potassium is his serum potassium…it just simply says Potassium on this labs. It got down to 3.1 and he had to have an infusion a few months back, which wasn’t pleasant. He is on Zytiga & Prednisone 5mg. The MO did tell him he was doing great, is on the right path, and everything is moving along as expected. Thanks you all for your input. Tall_Allen, I will ask his doctor about increasing the prednisone and see what he says. I will update. He is having another CT scan on 7/7 to check met sizes and the like. He’s having some rib pain where 1 of his Mets know to be. Summer is on the way & so are his hot flashes 🥵

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