Very short doubling time.

[GoEZ]

Hi guys. It’s been a while since I’ve been here and things are starting to change again. I finished chemo in early November and had a PSA of 1.5. I have a doctors appointment next week and went for a blood test and found out my PSA had risen to 27.Just wondering if there are any questions I should ask my doctor this week. I’ve been on all the pills and chemo. Just wondering if there’s anything I should ask her to try. Thanks

[Tall_Allen]

Where are your metastases? Have you tried Xofigo? Any met biopsies?

[GoEZ in reply to Tall_Allen]

I have metastasis on my right side of my body. Ribs, spine, hips, collarbone and lymph nodes. I stopped counting at 25 metastasizes, it was making me sad. I had another blood test today and found my PSA was at 32.6. That’s an increase of 5.5 points in 6 days. They want to start me on Larotrectinib. Don’t know too much about it.

[Tall_Allen in reply to GoEZ]

It is for a rare mutation in prostate cancer - I'm glad they discovered you had it. let us know how well it works for you.

[GoEZ in reply to Tall_Allen]

Do you know if they did any thing for PC. My Doctor didn’t find too much information on it. She said most of the study was on other forms of cancer. Also there were not too many people in the study. It was really showing promise in the people in the study so the FDA approved it. I do have the mutation. Was checked 2 years ago.

[Tall_Allen in reply to GoEZ]

It was approved for anyone with that mutation, regardless of the cancer. It's just very rare to find that mutation in men with prostate cancer.

[GoEZ]

My bone scan after chemo showed low activity and no new one. I have metastases on my ribs, collarbone, spine, hips and lymph nodes. However my PSA was 1.5 after chemo and PSA test last week ( 2.5 months after chemo) was 27. My test today showed 32.6.

[GoEZ]

Yes, I was tested a year ago. My Doctor said that most of the study was for other forms of cancer. She said there was little to no information on prostate cancer. A lot of this information is over my head. I should be getting the drug in about to weeks.

[GoEZ]

I believe I was tested for some other drug. There are no drug trails I fit into here. Second line chemo didn’t look too promising since my cancer blew away my last chemo. I will ask her for the blood test and how she came to trying this drug. She may have told me but I was I a bad way seeing my results and getting the bad news.

[GP24]

It seems to work if there was a TRK fusion–positive gene test. Here is a report of a trial with Larotrectinib:

ncbi.nlm.nih.gov/pmc/articl...

[GoEZ]

Thanks

[GoEZ]

Thanks

[AlanLawrenson]

A minor but important point. It is very difficult to absorb all you are told when visiting a MO. In my view, it is necessary to have someone with you to take down notes, to ensure that nothing is missed, during the consultation.

It is equally important to write down a list of questions to ask BEFORE the visit, and for the scribe to cross them off the list when answered.

By the way, the trial results to date appear promising, although I have only briefly reviewed them.

Best wishes.

[GoEZ]

Yesterday I found out I was denied the new drug. I must do second round of chemo before I will get approved. 6 more months o f chemo here I come. Doctor was very disappointed. I was crushed.

[GoEZ]

Ok, I just finished my 2nd chemo after just 4 rounds. PSA was stopped but ME were getting larger. Today I received larotechtinib. I will be starting today. I will let you know how it goes.