My husband is finally getting his PSA down with Xtandi. It went from 60 to 18. His testosterone has gone up to a normal range, since he is only taking Xtandi.
What surprised me is that despite his testosterone going up -it's 6- his Psa lowered and also his alkaline phosphatase lowered from 1000 to 500? Any ideas as to what is happening?
I hope this good news will continue!
For the tumor to grow, testosterone has to attach to the androgen receptors of the tumor cells. So if you lower testosterone, there is no longer enough of that to attach to these androgen receptors and most of the tumor cells cannot grow.
Xtandi and Casodex attach to the androgen receptors instead and therefore testosterone cannot attach to them. These drugs do not lower testosterone but block the androgen receptors.
What surprises me is that your husband does not get Lupron as well. The prescribing information requires this. It would lower the testosterone and increase the side effects. Has your husband joined a clinical trial?
Thanks for your helpful information. You're right about the prescribing info but he doesn't take Lupron because his oncologist was afraid of the effects on his heart, he has heart failure (it's under control because of meds) and arrhythmia. I'm just wondering if Xtandi doesn't allow the testosterone to attach couldn't this be enough in some cases? He has for the moment reasonably good blood tests I think, his hematies is 3.97 and Hemoglobina 13.5 is this low I wonder? Also his BP is ok.
He isn't involved in a clinical trial. There weren't any available where I live.
I personally think you do not need Lupron with Xtandi. There is a trial testing this but they have not published results yet.
On the other hand, testosterone has not yet recovered from the period he took Degarelix. This is another reason you do not need Lupron now. You can keep monitoring the testosterone level.
Degarelix will also lower Hemoglobina so you have to wait for this to recover. Low Hemoglobina can cause fatigue.
Thanks so much! We are keeping an eye on his T, so I'm glad to know we're doing the right thing.
It could be that the testosterone will not recover from the Degarelix treatment. If it does, it will get higher than normal and your husband will feel much better.
I had a Casodex therapy and my testosterone got more than twice as high than the normal level. The PSA value stayed low in spite of that.
I have been taking Xtandi since feb 2016 without Lupron. PSA undetectable. Testosterone at Supra levels, say 1300. -1500 range
That's great! Thanks, it gives us hope. Guess you have no mets?
Whether there are mets is another question. With an undetectable PSA not sure if scan will work at that level; regardless, I havent had any. Dr Myers before he retired said if there were a that scan could see my mets , I would light up like Christmas tree -- guess he felt I have many micro mets scattered.
Interesting what you are doing. What side effect from the Xtandi are you having and did you say your T levels are 1300+ I am currently on Firmagon which seems does not seem to be working and need to make a choice between Xtandi or Zytiga.
Thanks
My husband the first weeks he took Xtandi had some pain in ribs and hip, but after a while they subsided. Also some constipation, but he's ok with a bit of help now. I think he may have a bit of fatigue, but because he has parkinson and heart failure plus arrhythmia it could be that also.
He also took Firmagon for a year but when His PSA started going up again and quickly he started instead taking Xtandi, it seemed the best option with a weak heart.
T levels went very low with Firmagon , despite eventually his PSA rising. Now he has 6.14 ng/ml. what T do you have? 0.23 ng/ml.
Sorry last post should of said Firmagon seems to be no longer working with a raising PSA
Dr Myers said I would get very tired from Xtandi—however that didn’t happen. No recognizable side effects felt. He said I was exquisitely sensitive to Xtandi. Xtandi is a rather sophisticated med works 3 ways.
Guess he chose Xtandi as has trying to spare me from the side effects of chem castration.
When my T jumped to 1600 initially, dr Myers said it would come down, but didn’t fall that much.
Other dr didn’t understand why he didn’t also have me on lupron - maybe that standard
So Supra T side effect have to watch blood pressure but good sex life
Testosterone is measured in different units. These are nmol/l, ng/ml and ng/dl. If you do not mention these units one has to guess what you mean.
The classic castration level is 50 ng/dl which is 0.5 ng/ml and 1.7 nmol/l. Meanwhile it has been determined that a level of 20 ng/dl (0.2 ng/ml and 0.7 nmol/l) is much better and ADT will work for a longer time then. In case of orchiectomy you will usually achieve a testosterone level below 10 ng/dl (0.1 ng/ml and 0.3 nmol/l). If you add Zytiga to Lupron, you will usually achieve a testosterone level below 10 ng/dl (0.1 ng/ml and 0.3 nmol/l) as well.
The testosterone level of a healthy man is between 193 and 740 ng/dl (1.93 to 7.4 ng/ml or 6.7 to 25.7 nmol/l). According to my lab report. While taking Bicalutamide/Casodex I had a testosterone level of 1230 ng/dl.
So I assume Podsart means a testosterone level of 1300 ng/dl to 1500 ng/dl.
I understand, his T is 6.14 ng/ml which I guess is a normal range for a healthy man?His T when he was taking Firmagon went down to 0.23 ng/ml (that was a year ago).
Total testosterone at 6. I will not worry at all. He is still castrate if his T is at 6.
What number would indicate he wasn't castrate please?
Up until 20, it is considered fully castrate in most studies...some doctors do not care as long as total T is less than 50. IMO, if a total T level remains below 20, Its safe to continue with Extandi as its doing its job beautifully......If his PSA gets below 2.0 and ALP goes below 80, we are in an amazingly wonderful place. ( I am assuming he has his prostate untouched yet)
Thanks, so very helpful. Your're right his prostrate is untouched. But he has got a permanent urine catheter though because two years ago his kidneys were inflamed and he couldn't urinate properly, also his PC wasn't letting him. We tried several times to take it out but he couldn't urinate and had pain.
The good news is that his urinary problems are going to get better as his PSA keeps going down and reaches 2.0.
The cause of his urinary problem is that the prostate tumor presses on bladder and neighboring structure And the prostate becomes large and swollen with fluid due to inflammation making things even worse causing a condition called BOO (bladder outlet obstruction)
As the tumor shrinks due to treatment, the fluid and pressure is released restoring normal urinary function.
If you want to accelerate healing and reduction in his inflammation fast.. consider feeding him anti inflammatory foods such as ginger, turmeric ,garlic and lots of vegetables and fruits. This type of food accelerates healing by decreasing inflammation in the urinary system. He can also sit in a tub of hot water (as tolerated
for 30 minutes a day.) . This increases blood flow in urinary area and leading to reduction in inflammation. The catheter has to be removed at some point as keeping catheter too long cause recurrent urinary tract infections. Keep checking him for any UTIs.
Please note that this is not a medical advice...just some information for you to discuss with your doctor.
NOTE: I would like to amend what I said about sitting in hot water tub. As long as he has suprapubic cancer he should not do it because it can cause infection in catheter area. Very important to keep cath site clean and sterile.
Some doctors do prostate surgery to treat these problems.
Surgery should be last resort as it can dilate the urethral passage too much causing urinary incontinence in the future.
As for now ,the goal is to work hard to keep getting PSA down and do things which lower inflammation. Treat urinary infection if present with antibiotics. It can take 2 to 3 months to heal.
If all these measures do not fix the urinary issue, next thing to consider is cystoscopy with urethral dilatation.
Often the cancer grows in the prostate and exerts pressure on the uretha. Therefore you need the catheter. You will need surgery if you want to get rid of the catheter. Yes, this can result in incontinence instead but I think this can be better than a permanent catheter.
Not necessary ...not in all cases. Yes, many people need surgery but not all.
As the treatment for cancer is going well and PSA falling down, the tumor starts shrinking and becomes very small.. opening the urinary passage.. eventually the
catheter can be removed. I am not against surgery but it should not be the first thing to consider.
Thanks for that hadn't heard about cystoscopy with urethral dilatation.
Cystoscopy with urethral dilatation is a surgical procedure where cystoscope is inserted into the urethra and then once it reached the part which is around prostate gland it starts slowly chipping away wall thus making the the urethral passage wider and unblocked.
Its like a plumber opening the clogged drain.
Thanks, I can see clearly now how it works!
I have had two friends who had the TURP procedure performed and had great results...the trick seems to be going to someone who does hundreds of them...I had my prostate removed at MD Anderson and had a younger urologist ...He had done over 900 so that more than made the benchmark.....Blue Skies
Given his situation he may continue to do well on Xanti without ADT for a long time. Let's hope so. And regular PSA monitoring will let you know if it stops working.
I would suggest a conversation with his doctor about adding dutasteride (1.0 mg/day). It blocks the testosterone that is present from being converted to DHT (dihydrotestosterone) which is the much more potent form. This can provide an extra layer of protection and has minimal to no side effects.
. . . and the dutasteride might also help with the urinary obstruction from the prostate as that was its original purpose. It is the generic for Avodart.
Thanks so much, yes I'll talk it over with husband and oncologist.
I have had continuous ADT with Lucrin since 2013, and when this failed to keep Psa < 5, I had Cosadex added, extra IMRT, then Zytiga, and when these all failed I had chemo that increased Psa from 12 to 45+. Then I had 4 shots of Lu177, and Xtandi added after No 3 shot and Psa went from 25 to 0.3 now.
The PsMa scans are showing very low PsMa avidity and bone mets healing and normal ALK Ph, so I had a good result with Lu177 + Xtandi.
But my oncologist insists I keep going with Lucrin ADT and I don't have heart troubles to worry about now at 72yo.
Psa is likely to rise again, but I'll worry about that when it does.
But if I had Psa drop from 60 to 18, it means rate of growth of Pca is merely being slowed down, and scans may show slowly increasing amount of Pca.
It may be good idea to get PsMa Ga68 scan to see where mets are because despite the slowing down of Pca growth, its all still there, and to kill the Pca something else is needed, Lu177 may be suitable, or chemo, and the chemo will have more side effects than Lu177.
Psa does not indicate only how much Pca a man has, and only scans can tell your docs what the real amount of Pca is.
But since I had my Lu177 during this last year, it has become known that an "FDG" PET scan should also be done because not all men get good result with Lu177 even if they have high PsMa avidity. Pca can be exist in different forms as time goes on, ie, the mets are mutated forms of Pca that existed at diagnosis, so more than one type of treatment is needed to kill the Pca, if that is possible.
Patrick Turner.
Hi Patrick,Thanks!
You're right about scans showing where and if mets are increasing or decreasing. The last one he had, because he had pain, showed mets in his bones, that was 2 months ago, the funny thing is that after that his pain went and everything started to go well, PSA lowered and AP. Keeping my hopes high that Xtandi is his miracle med. He is very limited because of his other pathologies, heart, parkinson, so oncologist is weary of trying several things together.
The lower the Pca growth activity, the less is the pain, and the body tries to repair things where possible. But Xtandi will probably not work forever, just like Cosadex, Zytiga, and then the symptoms will return when Pca finds a way to grow while taking these hormone blocking drugs.
But there is a trial of Lu177 + Xtandi going on in St Vincent's Hospital in Sydney which may confirm that taking Xtandi while having Lu177 will reduce the Pca cells not just suppress growth of Pca cells.
Unfortunately, many Pca sufferers may have other health conditions that place limits on what may be done, and on travel, and to get Lu177, much travel may be needed. Your oncologist's weariness is one thing, but what does your husband want?
I am fit enough now at 72 to withstand most Pca treatment side effects. But in a few years I may suffer from unknown other aging effects that may make further Pca treatment impossible, and that's when I'll just have to accept palliative care and say bye-bye. I cannot live forever.
It is not easy for any partner to navigate through such problems. I don't have a wife or any offspring, so when I slip away nobody will be upset.
But today is Christmas Day, and I am not thinking of not being alive.
There's a nice café that's open for lunch, so that's where I'll be soon, and be happy that I have myself for company. But I can imagine than many others could be feeling very down today when we are all supposed to feel happy.
You can only love those around you, its probably the only option today.
Try to look on the Brightside,y
Thanks for your sound words, I will be positive, we come and go from this world alone, even if we have partners and children.
I'm not going to think either about what can happen tomorrow and I hope you enjoy your Christmas day immensely.
My husband agrees with the doctor, in fact he 's lucky that his oncologist allows him to choose because, he knows he does his research.
Thanks again!
I was in a clinical trial at NIH and received two 3-month courses of Xtandi over a 4 year period. Initially my PSA went from 7 to .06. After it slowly went back over 7 (3 years with no treatment) I received another 3 month course of it. The second time the PSA went down to .58 but in 5 months raised to 13. I’m now on my second month of Nubeqa (darolutamide) and PSA has dropped to 1.9. Hoping to get a couple more years without ADT. Will need assistance with the cost of Nubeqa once my free 2 month trial ends. Had PMSA scan and no bone mets, two lymph nodes ‘lit up’ one of which failed to demonstrate cancer in a biopsy.
Hadn't heard of Nubeqa (darolutamide), does it work like Xtandi?
Yes, it works the same, but different, lol. Testosterone gets blocked but not knocked down. Made by Bayer.
Thanks! Good to know.
Thanks so much for info. I'm sure you will have those ADT free years!
Thoughts about Xtandi efficacy
REDUCE XTANDI DOSE?
Xtandi did not work. 
