Happy Dance Time!: For those who have... - Advanced Prostate...

Advanced Prostate Cancer

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Happy Dance Time!

tom67inMA profile image
30 Replies

For those who have been following my story, my PSA has been low for a few months now but the lab just wouldn't give me the magical "<". This has been a bit of a silly sore spot with me. I'm competitive and wanted to have the lowest PSA possible. I wanted to be a member of the elite "<" club. Well after enduring abiraterone side effects for a couple weeks today I got my coveted "<" with the lab reporting "< 0.01". Happy Dance Time!

In other news: the abiraterone side effects appear to be easing off, and this morning I ran three miles faster than my 5K time from last November. I'm thinking in July I'll be returning to work. Happy days indeed.

The only fly in the ointment is that my liver enzymes seem to be slightly elevated, but my understanding is that the MO isn't going to worry unless they reach several times the upper limit.

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tom67inMA
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30 Replies
Sunlight12 profile image
Sunlight12

Woohoo!! Congrats, Tom! That's fantastic news :-) Doing a happy dance for you in my kitchen as I cook (all sharp implements on the counter :) ) May the good news keep right on coming!

Sunlight

NPfisherman profile image
NPfisherman

Congratulations...you are a card carrying member of "The Undetectables"...your lab is way more specific than the one they run on me at Cleveland Clinic...this is great news...glad for you, brother...

Don Pescado

JamesAtlanta profile image
JamesAtlanta

Congratulations! A wonderful milestone! And very impressive that your running is going so well!!

Best wishes,

James

Congrats. I've been in the club for 7 months now on Zytiga. It's a great feeling, enjoy it!

RonnyBaby profile image
RonnyBaby

A turning point - hopefully pointing to a lot of road ahead for you and your loved ones.

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

Just for you....

"<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<"

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/30/2019 11:07 PM DST

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

This is the third time I read your post and finally got it yayahahaha yayahahaha. Must be Lupron fog 🌫 or something. ......duh Huh ? Kewl one ......

Tub111 profile image
Tub111

Woo hoo!!! Happy dance for sure!!!

Congratulations 👍

Sheri (cheerleader for you all now)

tom67inMA profile image
tom67inMA in reply to Tub111

I've followed your husband's story and while I was greatly saddened by his loss, it also inspires me to make the most of each day. A very special thank you for sticking around and helping us all in our fight.

Tub111 profile image
Tub111

Thank you Tom. My little way of honouring him and hoping his story inspires others as yourself to never give up and live your lives!!!

Congratulations again 👍

monte1111 profile image
monte1111

Congrats. Getting to 0.1 tickled me just pink.

erjlg3 profile image
erjlg3

WooHoo so Happy for you!

Awesome, I just hit PSA 0.02 yesterday, I'm in the same PSA downward spiral as yourself. Regarding work, it has helped me dramatically, the brain is in good shape, highly recommend staying busy.

Anyway, my doc has ordered the complete gamut of scans, brain to pelvis. Wants to compare when my PSA was 1000+...

All the beat,

George

tom67inMA profile image
tom67inMA in reply to

Good luck with the scans, my last bone scan was a huge improvement but still had a few hot spots which might be bone healing. I expect you'll see massive improvement too.

in reply to tom67inMA

I had many bright spots down my vertebrae, but "lytic" (bone loss) in findings, which - is not consistent with "typical" prostate cancer bone metastasis.

Got a biopsy from T8, which was the brightest on the block (pun intended) , came back not cancerous, most likely arthritis. Although, my doc, Dana-Farber Mark Pomerantz claims biopsies are not definitive.

Cool, Boston area weather is awesome today, heading out for a hike with the dog, later...

Kaliber profile image
Kaliber

Congratulations, good for you. Just got mine as well this past Tuesday. Mine is <0.1 tho yayahaha. First time in seven reports there was no ( H ) beside my reading too. I assume that this is my first in the normal range. High five buddy, now let’s see how long we can keep it there yayahaha. 👍👍👍👍👍

tom67inMA profile image
tom67inMA in reply to Kaliber

There are many who say anything below 0.1 is noise, and I tend to agree with that.

in reply to tom67inMA

Ok, this "noise" sounds like Mozart to me... :)

Kaliber profile image
Kaliber in reply to

You got that right , sweet music to the ears of all the people like us.

Kaliber profile image
Kaliber in reply to tom67inMA

My onc doc says he prefers it this way too. Says there is normal bouncing around when read out to real low numbers that can mislead and worry people unnecessarily. Seems ok to me yayahahaha.

tom67inMA profile image
tom67inMA in reply to Kaliber

So, it's a tradeoff between needless worry and pointless bragging about ever lower numbers? :-)

Kaliber profile image
Kaliber in reply to tom67inMA

Pretty much yayahahaha. People are naturally competitive , others feel safer couched In their protective tenth ... its all good. All of us know where this crazy train eventually ends up ... we are allowed to have it anyway we want, and we should. 💪💪💪 👍👍👍👍

Outstanding. BTW, anything less than <0.1 is great and undetectable. Does your guy check T? It is the other important number in our fight. Keep kicking the bastard.

Gourd Dancer

tom67inMA profile image
tom67inMA in reply to

He did check T once at my request (to satisfy my curiosity, not his) prior to starting abiraterone, and it came back at <7. So I do seem to be doubly blessed by both a large drop in T and cancer that is very hormone sensitive.

BTW, I recall that in a previous reply to another post you recommended staying on abiraterone as long as possible, and not to nag my doctor into taking a medication vacation. It seems I'm tolerating the abiraterone very well and the insurance company is covering it 100%, so my desire for a break has diminished greatly.

in reply to tom67inMA

I get T checked with every blood draw, currently <3, yikes!

Regarding iADT, while on the vacation track, it does feel a bit scary to see T rise, then most likely PSA rises as well. Man, the word "dilemma" is supercharged with this situation.

But, then, I think, iADT vacation time could keep the cancer cells dumb, prolong any mutation or waking up the other nasty cancer cells, yikes!

tom67inMA profile image
tom67inMA in reply to

There does appear to be something to that, but it is accepting and living with the cancer and trying to keep it under control. Right now the side effects are tolerable to me, so I'm thinking total extermination of many metastases if not everything.

Hi Tom. I know nothing about Abiraterone as it was not available/needed in 2004. I have harped against taking hormone vacations, though. I just know that there were new silver bullets to try if my six month chemotherapy- hormone therapy trial did not work. It did and we stopped the hormone injection in February 2010. A year later added low dose testosterone when T did not come back. I still on that and PSA is undetectable and T ranges from 750 to 550. All is good.

Both times when I stopped Lupron and then when I added Androgel, I asked, “Won’t my PSA rise?” The response was that he did not think so, but it it did, he would restart hormone injections. The process was to validate his research....... it did.

I asked about T because in all of my blood work (over 120), it is always measured. My guy (in academia and research) told me upfront that he wanted my T during the trial to be <5.0. It hung around 2.0. I believe that there is a correlation. I feel so much better now that T is respectable. Oh, all my distant Mets are gone and have been replaced by new bone growth.

Anyway, if you have maintained, <7.0, then that is a big, big plus. To me, it means that what you are doing is working better than most. Cool......

Keep killing the little bastards and don’t give it a chance to recover. You can do this.

GD

tom67inMA profile image
tom67inMA in reply to

You have had the best possible outcome, with normal levels of T (albeit supplemented) and no cancer. Us recently diagnosed patients dream of such things, and you are living proof that it is possible.

Some here say that ADT doesn't kill the cancer, but I believe that if you put it into a deep enough sleep it should atrophy, be susceptible to immune attack, vulnerable to off-label drugs, etc,. I'm hoping to kill all of it eventually, but failing that, less cancer means less opportunity for it to find a way around treatment.

in reply to tom67inMA

"Some here say that ADT doesn't kill the cancer..."

Are they kidding, I have a before (PSA 1000+) and after (post ADT, PSA 68) pelvic MRIs, the latter had massive necrosis findings...

tom67inMA profile image
tom67inMA in reply to

That's awesome!

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