High T clinical trial update from a d... - Advanced Prostate...

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High T clinical trial update from a data point

Chugach profile image
10 Replies

Update from a data point 3-mo in on a high T clinical trial

Brief bio- diagnosed at 46 Gleason 9/10; started ADT. MRI indicated surgery was not an option; lymph system involved and other masses beyond the prostate. Brought out the big guns: 12 weeks of heavy chemo and simultaneous radiation for 35-40 days. Months pass then PSA rise and found a spot to rib bone, did targeted radiation on the spot and started Zytiga. Months pass PSA flirting with Zero then Zytiga started to fail (3 years in now) new spots to ribs. Started the High T trial. Stopped Zytiga and applied. 100 mg testosterone gel (2 packs) each morning. Stayed on Lupron to control T levels.

Starting on the trial my PSA was 20 and I had 3 spots to the ribs. Three months of high T (1000-1200) my PSA was 69, the three existing (assuming adt resistant pc) were noticeably improved and did not brighten up with the contrast/radioactive stuff , however I also got 3 new bright spots to bone (not too big though) per the study I was switched to Xtandi so just starting that now.

My analysis: after much worry about the PSA value I finally decided not to worry about that during the trial. The scans were mixed with notable improvement on existing areas of PC on bone but also new spots to bone. My PC has a broad range of genetic diversity and the mixed expression may reflect that.

The more interesting will be next three months as the HighT May resensitize the PC androgen receptors for the heavy smack down that the Xtandi is going to bring.

After 3 years of ADT, highT felt great. Not emotional; body hair growing back; parts working again, had to buy deodorant again, gained bone density and good muscle mass.

Back and ready for the next fight. I’ve got mountains to climb and kids to raise- F*** PC- I’m gonna be putting this dragon back into his cave.

Chugach

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Chugach
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Longterm101 profile image
Longterm101

Hang in there and keep us posted

I was Dx Gleason 9 node positive no bone Mets with 3 little kids that I live intensely

When were you Dx?

How long did zygita work for u?

Chugach profile image
Chugach in reply toLongterm101

I was diagnosed in March 2016 (no Mets to bone). Zytiga worked for about 9 mo

Longterm101 profile image
Longterm101 in reply toChugach

how is it going with the T Trial? How are you feeling and doing?

Chugach profile image
Chugach in reply toLongterm101

It’s a 12 month trial- but I’m kind of out now using HighT due to rising PSA so my next 9 months are standard of care - Xtandi . HighT made me feel good

Longterm101 profile image
Longterm101 in reply toChugach

Keep up the fight

Maybe LU177 next

Stay positive

Chugach profile image
Chugach in reply toLongterm101

Update- I dropped from the trial after 5 mo. Xtandi failed me after 2 months PSA went to 90. Stopped Xtandi and started Taxotere (IV Chemo). F**k Cancer!!!

henukit profile image
henukit

Great update, thanks! Is the trial at John Hopkins or one of the branches?

I'm also DXed at 48 with high GS9 and BRCA2 to boot. Looks like castration resistanse is just starting to emerge so I'm thinking about BAT in the future. I contacted JH researchers and they say I should be progressing on the second line therapy before qualifying.

Chugach profile image
Chugach in reply tohenukit

Trial is in Denver

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

Keep on Keeping on...

"F*** PC- I’m gonna be putting this dragon back into his cave."

Dragon? Where's Saint Michael when we need him...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/18/2019 1:12 PM DST

Spyder54 profile image
Spyder54

Just see this now Chugach. Awesome Attitude!!

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