What's next?: Hi. I've had... - Advanced Prostate...

Advanced Prostate Cancer

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What's next?

JamnJ profile image
14 Replies

Hi.

I've had Brachytherapy, radiation and Lupron.

With Mets to bones we added Xtandi and My PSA dropped to .015

We recently stopped the Xtandi as I wasn't tolerating it well. My PSA climbed a bit to .22 but we've decided to wait 3 months to see what it does. They are thinking Zytiga with Prednisone next.

Staying positive!

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JamnJ profile image
JamnJ
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14 Replies
Magnus1964 profile image
Magnus1964

Great attitude, stay strong.

Tjc1 profile image
Tjc1

I was the same on Xtandi and reduced the dose by half. Now the side effects are tolerable.

Shooter1 profile image
Shooter1 in reply to Tjc1

Ditto, now on half to tolerate side effects.

Patrick-Turner profile image
Patrick-Turner in reply to Shooter1

To Jamnj and others,

But if the Xtandi dose is halved, it may reduce the time that Xtandi effectively suppresses Pca growth. I had EBRT in 2010, then I've had ADT since then. Cosadex added 2016, got 6 mths, then Zytiga added 2017, got 8 months, then Xtandi was disallowed and only thing was Docataxel chemo with Psa at 12 in 2018. After 5 shots Psa went to 50 and I booked Lu177. Psa was 25 at Nov 2018 and after 4 x Lu177 costing usd $28,000 is now about 4.0, helped by Xtandi after leading research doc said "just do it" and Lord Nose how long I will last. But if Psa was only say 0.015, there seems to be little need for concern. An increase to 0.22 is 14.66 times, or seven doublings, a lot, not just a bit. How long did it take for Psa to rise x 14.66 times? Did you mean from 0.015 to 0.022? this is not even one doubling.

with a low Psa the PsMa Ga68 Pet / CT scan may not show if a man would benefit from Lu177, so no medicos would let you have it. Its not easy to kill each and every Pca cell where Psa is very low. Maybe chemo could be tried, but side effects are awful compared to Zytiga, Xtandi, or Lu177.

If Psa was 0.2 now, and doubling time was say 3 months, then after each 3 months Psa would be 0.4, 0.8, 1.6, 3.2 at one year from now. But doubling times have a nasty habit of speeding up. But then PsMa scan and Lu177 could be used but nobody could ever expect Psa to go back down to 0.2. So often the halving rate is far longer than the doubling rate and so Psa is always showing Pca is present, unless you get remission, where you stop all treatments including ADT and Psa remains undetectable for 5 years, but then there may be mutated forms of Pca which don't make Psa and by the time they get detected you may find your Pca is untreatable by anything. Enjoy your time while Psa is low. Usually it rises after some time.

Patrick Turner.

JamnJ profile image
JamnJ in reply to Patrick-Turner

.015 to .22 in about a month. Told the doctor that I felt good without drugs. I think he's just giving me a good summer of travelling.

Patrick-Turner profile image
Patrick-Turner in reply to JamnJ

Well the figures you quoted are correct, and 0.15 to 0.22 in 30 days your Psa has increased 14.6 times, so the doubling time must be between 6 and 7 days, and if I were you I'd be very worried. In case you don't understand the maths, 0.22 divided by 0.015 = 14.66.

In other words, the amount of Pca you have has increased maybe 14.6 times in about 30 days, a month.

So say 29 April if Psa was 0.015, then :-

after 6 days Psa = 0.03,

after 14 days Psa = 0.06,

after 20 days = 0.12,

after 26 days = 0.24, about what it is "now", but if the Psa was tested a week ago its maybe now much higher than 0.22.

So IMHO, expect a big rise in Psa to dangerous levels.

I have had times when Psa has risen quickly, but never as quickly as yours, and I've not known anyone else to have such a fast Psa rise.

In my case, after quitting ADT in 2012 after being on ADT Eligard for 2 years and after having 70 Grey EBRT, Psa went from low of 0.08 to 8.8 in 6 months and was put back onto ADT in mid 2013, and Psa nose dived to 0.22 in a month, but then slowly went back up, but became a threat 3 years later in mid 2016, when it went to 5, and I was put on Cosadex + Lucrin, and given "salvation IMRT to PG", and Psa was suppressed for only 12 months, then I had Zytiga + Lucrin and same thing, only it lasted 8 months. I then had chemo for 15 months which had Psa go from 12 to 50. Then I began Lu177 last November and had last 4th infusion about a month ago, and also now taking Xtandi, and Psa is maybe 4, but I can't say because that was 4 weeks ago, and next Psa is on next Friday and I see my oncologist in a week, to review things, and maybe decide how long I stay on Xtandi. Usually they keep a man on this kind of drug until Psa begins to rise again as I think it will, and I might need more Lu177, but between now and then I'll ask for whatever else can be used such as DNA analysis and PARP inhibitors etc, but these things often have a very low success rate because cancer mutates so much to not be affected by many treatments that are too specific for a small range of DNA types.

I am 72, and was diagnosed at 62 in 2009, about 4 years too late. I had a low Psa, but high amount of Pca which was in-operable when docs opened me up to remove PG. The Gleason 9 score meant Pca had probably already spread to many places but was too small to see in any X-ray or CT scans, but mets were found in 2016 with PsMa Ga68 Zytiga did e Pet / CT scan. Only 2 lymph nodes. But a year later, maybe 20 mets, and another year later there were countless mets. The ADT and Cosadex were failing to suppress Pca growth. Chemo failed. Lu177 has worked so far, but maybe only put my cancer status back to say where it was 3 years ago, and so in another 3 years I could be quick sick.

During the time from 2009 and Feb this year, 8 years, I've cycled about 100,000km, so apart from having a cancer problem and being chemically castrated by ADT, I had good life quality. A bad hip is preventing me doing lots of things including any cycling. I'm seeing another doc about the hip, had X-ray yesterday.

Be prepared for a long fight with Pca.

Winter begins here in days. Its now cold, skies are grey, and the last autumn leaves have blown off the trees and my work shed is cold, and I can't warm up with a good cycle ride like I used to every winter, but otherwise I'm coping, and looking forward to whatever future I have without much pain. I felt good with the drugs. Without the drugs I'd have felt worse for awhile, and then felt nothing because I would have died 6 years ago.

Patrick Turner.

Fairwind profile image
Fairwind

How long ago did your RT end ? It can take a while for the full effect to be realized... Just a note about Zytiga...It's now available as a generic so the co-pays are much less now...It controlled my cancer for 2 years..

JamnJ profile image
JamnJ in reply to Fairwind

It was 2 1/2 years ago

Tall_Allen profile image
Tall_Allen

I hope Zytiga works better for you.

FightTillTheEnd profile image
FightTillTheEnd

Keep fighting the good fight!

I was on a similar journey. I was on the full dose Xtandi and there were days when I couldn't even walk. Hardly got sleep with the shooting pain etc,. Dropped the dosage to half and seemed to manage better but there was no conclusive proof that half the dosage was working at controlling the PSA....so

Doc switched me to Zytiga with Prednisone. Seems much better than Xtandi with side effects - although now I'm having to deal with inflammation around the pelvic area. Not 100% sure if it's Zytiga related though...just started the Zytiga journey....

MayorMike profile image
MayorMike

Give it to God, and stay strong.

I’ve had a prostatectomy and radiation. Two year later PSA rose again next was Lupron injections quarterly. Then three years later it came back in the form of metastatic stage four lymph node. At that point we added zytiga and prednisone. I’m been on that since last October. The tumors in my eight tumors in my lymph nodes along my spine decreased considerably an are now pea size except one about Lima bean size. I feel fine on it I just get tired very easy, and don’t drive much anymore because of it.

Now, “it” being cancer, heart disease, high blood pressure, diabetes, epilepsy, high cholesterol and high triglycerides. A total of 32 pills a day so if you’re not on that regiment on pills it may not knock you out.

monte1111 profile image
monte1111 in reply to MayorMike

I can't even count to 32 anymore.

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

32 F-N pills per day? You should change your ID to DoseMike...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/30/2019 6:22 PM DST

j-o-h-n profile image
j-o-h-n

Your location: Kitsap peninsula in Washington looks beautiful. Enjoy your 3 month meds vacation. Actually you live in a vacation area.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/30/2019 6:18 PM DST

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