Damn PSA

[Javelin18]

I got my PSA results 2-1/2 weeks after my first Lu-PSMA treatment. Prior to the treatment It had stabilized at 100,,after climbing from 49 following chemotherapy and SBRT.

I had an appointment with the oncologist one week after the treatment. She checked PSA , although we both expected an increase from cell death. At that point it was 169.

Most of my cancer pain has gone away and I feel much stronger, so it seems to be working. My PSA reading is now 124. Disappointing, but I’m keeping the faith. My MO reminds me that clinical signs are important, and PSA can give false indication of progress. Still, I was hoping for a better number.

[Tall_Allen]

You may want to get an FDG PET/CT:

prostatecancer.news/2019/12...

[Javelin18 in reply to Tall_Allen]

Thanks for the suggestion. I have an appointment with Dr Aparicio at MD Anderson next week. This is more food for the discussion.

[Crummy64 in reply to Tall_Allen]

Such a clear and comprehensive description of Lu177 therapy TA - thank you. Professor Emmett rang me yesterday to check on Jon after his first infusion last Thursday. She said not to expect too much this round - he ‘has high disease burden’ and also not to take too much notice of PSA at this stage. He apparently got a higher dose on this first round than he will be given subsequently and she also had him back on abiraterone for 10 days prior.

[Javelin18]

Alkaline phosphatase jumped up too. 281 before treatment, 270 one week after and 349 now. I don’t know a way to put a positive spin on that.

I’ll also ask for a transferin test. It’s an indicator of NEPC, which so far is negative.

[Tall_Allen in reply to Javelin18]

The only reliable test for NEPC is IHC. Blood tests aren't valid.

[Hidden]

Stay strong Javelin! 🙏🤞

[Javelin18 in reply to Hidden]

Thanks. I’m going to discuss with my MO and during my consultation with Dr Aparicio. I’m putting more credence in the clinical signs for now.

[Hidden in reply to Javelin18]

You’re on it! Self advocate. Stick up for yourself. If I had taken to heart what my doctors said I d be gone by now . Heal yourself anyway you can. Life is beyond our pay grade and theirs too. 🙏

[Javelin18]

My MO tested transferrin after my chemotherapy to screen for NEPC. I’ll have to ask her about the test.

[bellyhappy]

My first blood test after the first infusion of LU 177...PSA rose marginally from 3.92 to 4.08...CEA has also increased from 8.8 to 12.3.....After the second and third infusion of LU 177, the PSA continues to drop. The latest PSA is at 0.202..Have faith...and you will be well

[Ian99 in reply to bellyhappy]

Good results so far. Any side effects you can tell us about ?

[bellyhappy in reply to Ian99]

The major side effect is dry mouth...all the rest of the blood test results showed normal....

[Ian99 in reply to bellyhappy]

It seems that salivary glands and tear glands have some PSMA and so inadvertently get targeted during Lu-177 treatment. Not sure what can be done to mitigate that. Hope it works out for you.

[Javelin18 in reply to Ian99]

I wore an ice wrap, used for jaw pain, to my treatment. The nurse said they did a study and didn’t find a benefit for the salivary glands.

I haven’t had a problem with dry mouth, but of course can’t say if I wouldn’t have had a problem without it. My PSMA scan showed high uptake in salivary and tear ducts. So I’ll continue using it. I haven’t noticed a problem with my tear ducts, even though the wrap probably did not cool them.

Good inconclusive information

[ReeGee]

I'm now also trying to get an appointment with Dr. Aparicio to discuss the latest on immunotherapy. I think we would all appreciate it, if you would report back regarding what you hear from her, and I will do the same.

[Javelin18 in reply to ReeGee]

Great suggestion. Im also interested in new immunotherapy options. Since we’ll ask different questions we should get a broader picture.

I want to be respectful of the confidentiality of our relationship, so I’ll ask her permission to share our conversation. This also might get her to use me as a mouthpiece, and provide more information.

[Javelin18]

Thanks to everyone for their words of support. I’ve reset my expectations for the therapy. I was hoping to be amongst the 10-15% of patients with a complete response . It looks like I’ll be part of the 50% of patients with a 50% or greater drop in PSA.

No rest for the weary. It’s probably better for my new vocation of helping to find a cure. If I had an easier time of it, I might have stopped working so hard on the cure.

[slpdvmmd]

Three links to PET imaging in Prostate Cancer. No real consensus but I firmly believe knowledge always helps. clincancerres.aacrjournals.... ncbi.nlm.nih.gov/pmc/articl... pubs.rsna.org/doi/pdf/10.11... 18F-Fluciclovine is Axumin PET

[Javelin18 in reply to slpdvmmd]

Thanks for the links. Always much to learn.

[Javelin18]

I was diagnosed at Gleason 4+5, psa 129, with a doubling time of 3 weeks. I’ve been through most of the SOC therapies, which cut my PSA by 2/3, and increased doubling time to 2 months. With that aggressive level of disease, I’m not ready to stop standard therapy, but I try to keep an open mind.

I think it’s okay to post the link here.

[j-o-h-n]

Think of your Psa using the same excuse when your partner saw your ding ding for the first time. Remember you said "come on now sweetheart, it's only a number".....................

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/01/2021 11:26 PM EST