I got the news a couple of days ago that I am positive for the PTEN gene. I am very nervous about it. Would you be kind and reply “YES” if you are positive for this gene so I can read your profile and learn from your experience.
happy new year everyone and thanks in advance.
Yes, on my original tumor. I haven't updated my profile in awhile but will so so asap. I am doing well. I still bike regularly, did 30 miles yesterday. I have scans and PSA this month and Dr appt Jan 31. Hopefully, everything is still stable.
What do you mean you are "positive" for it? Most guys have a PTEN loss. This post from 4 years ago may help your research.
healthunlocked.com/advanced...
By a total accident, I found a report for genetic mutations from MSK. it says I have this mutation PTEN positive, it reads. What do you mean please by saying most guys have it. I am very anxious since I found out about this. I was under the impression that I have No mutations. I am concerned because I heard it speeds up the time to castrate resistant.
I have PTEN loss. Diagnosed 6.5 years ago. Still hormone sensitive. Off all meds for 18 months. Still <0.01. Gleason 9, metastatic to bones. Avoid going down rabbit holes. Better to stay present and enjoy the new year. And eat ice cream.
Thank you, sir. Happy new year
How'd you get off all meds with metastases?
classic.clinicaltrials.gov/...
I am not actually enrolled in the trial but doing it with my MO ok. T has only recovered to 48 in 18 months but I feel great. Yes, scary to think about but I don't think about it much.
Did I just see the best two words in the English language, "ice cream"? Make mine the usual, Chocolate Chip Ice Cream (two scoops)... Man oh Man starting off 2024 just right.....Thanks.....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 01/02/2024 1:18 PM EST
j-o-h-n wrote -- " ... Make mine the usual, Chocolate Chip Ice Cream (two scoops)... "
*Breyers Chocolate TRUFFLE Ice Cream* is Da bomb!!!!
Try it, I think you'll like it more better 😋
Not in the Grocery store where we shop (ShopRite).... But will look around for it.. Thanks for the referral....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 01/04/2024 4:20 PM EST
Hi. Did you have clear scans before going of the adt, or was it because undetectable psa for prolong period. My husband has pten loss, but after radiation and chemo the spots are still lighting up, though less intense. Psa is undetectable since aug 2023. Treatment started may 2023.
My MO told me about 20% of guys with PCA have PTEN loss. He was interviewing me for the CAPItello-281 trial which specifically targets PTEN loss.
clinicaltrials.gov/study/NC...
Based upon this "20%" and the fact that I didn't want to go into a trial in which I didn't know if I was taking a placebo or not, I I decided on PSMAddition which used Lutetium. I wanted to get then PTEN test anyway, but the MO wouldn't approve unless I signed up for CAPItello-281.
However, it is true that PTEN loss is more common in more aggressive PCA cases (40-60%).
ncbi.nlm.nih.gov/pmc/articl...
I did get a molecular genetic test found out later that I have a PIK3CA mutation "of uncertain clinical significance". I looked in the literature and then consulted with my MO who agreed that in my case with the PIK3CA mutation I was more in the 40-60% range of having PTEN loss.
I understand your reluctance to enter the trial. If/when my PSA rises again I assume I will go back on Lupron + Abi. Having been a great responder before I probably would consider that trial. I'd be ok not getting the new drug. I looked at the list of sites and notice a lot of places have withdrawn or terminated. Interesting.
I checked out the list too. Some sites are still recruiting, but I wonder why the withdrawn or terminated? Anyway, its great that your PSA is low and I hope that it is beaten down for a long time! I'm ending the PSMAddition trial and it will be SOC for me for at least another year, and then who knows. Perhaps a vacation? The debate rages, but for me its SOC for now.
A couple of days ago , This post:
Repurposed drugs database
Maxone73 profile image
Maxone73
2 days ago•2 Replies
it might be useful!
anticancerfund.org/en/redo-db
It lists caffeine as having a "target" of PIK3CA. Apparently PIK3CA mutation is involved in the "...hyperactivation of the P13K/AKT/M-TOR signalling pathway..."
ncbi.nlm.nih.gov/pmc/articl...
There are some other natural products that inhibit P13K/AKT/M-TOR. This 2013 paper lists more than a few including; Danshen, Curcumin, Indole-3-Carbinol, Apigenin, Fisiten, etc.( probably due to date of publication, authors list tocotrienols-vitamin E, big questions about advisability of taking vitamin E if one has Pca from later study.)
ncbi.nlm.nih.gov/pmc/articl...
Perhaps worth a look.
Thank you bringing this up - I didn't look at that post, but will now! Thanks for the other links. I had a researcher sit with me going over my genetic results and the hyperactivation ("stuck open") of the signal pathway. Caffeine is a good place to start...
Yes, I have been tested positive for PTEN loss.
thanks, Magnus. So this is not a death sentence? How long ago were you castrate resistant please?
Being born is a death sentence. Not one single human on the planet has the choice of when and how we are going to die. But we do have the choice of how we are going to live, even if we do have PCa. I can tell you now that if I had a choice of having PCa or to be living in Gaza right now, - I know what I’d choose.
That aside - I do hope you can try and keep positive. In looking at many many others on this forum, there are heaps who are metastatic with PSA scores in the stratosphere who are still with us 6+ years and counting. And with quite reasonable QoL. Always choose to be the glass is half full person. It can really physically help. 🙂
Three years ago, Xtandi failed. My T is low yet PSA started to increase.
What drug are you on now please? Let's all make 2024 a year of learning and doing the best that we can. Thank you for your time.
I'm not on any drug now. I was suppose to go on plavicto but things got out of hand. After 31 years I don't think I have a lot time left.
I hope you get some answers to your questions. I look forward to reading them as well
YES with PTEN TP53 and CHEK2 TMB 3.0
56 year old making the best of things
BRAC2
PSA still at <.10 but CT scan and NM bone scan done 11/07/18 shows new met . Prior test done 11/01/17 
Biochemical recurrence...now what?
