Travel to Turkey for treatment

[leebeth]

My husband is traveling to Turkey for treatment with Ac225 at Anadolu Medical Center.

Several members here have traveled there either for Lu-177 or Ac225.

Any tips?

[MyDad76]

I do not have any tips, but I wish you all the best! Based on what did you decide for AC225 vs LU-177? What is the cost of treatnent? Have you also contemplated tandem treatment AC225 & LU-177?

[MyDad76 in reply to MyDad76]

Sorry, I just read bio and see, your husband already had LU-177. I will be keeping my fingerss crossed for you!

[leebeth in reply to MyDad76]

Thank you! We need all the crossables crossed. The cost of the treatment itself is $18,000, plus a small cost for labs, imaging, consultation. The cost will definitely go up after Dec 31, but we don’t know by how much yet. (My husband spent his career in supply chain and purchasing; signing for something with no knowledge of the ultimate cost was not easy but our only hope.). Of course, there is the cost of travel and lodging as well.

We had hoped to get him into a trial here in the US, and have an appt for evaluation, but we were told at Mayo, and his local oncologist agrees, that his “runway is too short” to wait to see if he is accepted, He needs treatment ASAP.

In one week his PSA went from 64 to 109.

[MyDad76 in reply to leebeth]

When I read your bio I really felt sorry for you and your husband. You have thrown everything at cancer and yet it finds his way around. Was your husband tested for any genetic mutations?

[leebeth in reply to MyDad76]

Yes, he was tested initially and part of the Pluvicto protocol at Mayo includes Guardant 360 testing prior to treatment and after each 2 treatments, so right before 3,5 and 6 weeks after #6. So he had 2 recently, and one in January. No mutations and very little actionable. Immune therapy with Keytruda was the other option, but no one held much hope for success.

The Pluvicto definitely works a little. He is better than he was a week ago, before his last treatment. It just doesn’t work enough to stay ahead of the cancer. A small spot in his liver in August is now 4.4 cm, with innumerable other lesions, in spite of it all being intensely PSMA avid.

[Hidden in reply to leebeth]

Have you already ordered the treatment i Turkey?

[leebeth in reply to Hidden]

Yes we have.

[tango65]

I assume you are aware that Ac 225 PSMA may affect the salivary glands a lot with a significant reduction in the production of saliva. This complication could severely affect the quality of life.

Ac225 with the J591 ligand apparently does not affect the salivary glands. There are trials with this ligand in the USA

clinicaltrials.gov/ct2/resu...

I believe you could get the same ligand in Perth Australia with Dr. Lenzo

genesiscare.com/au/our-doct...

[maggiedrum in reply to tango65]

One of the (additional) issues my doc says that would preclude radioactive-PSMA therapy is because I already have extreme nightly dry mouth. I am doing every thing I can to treat that but basically it amounts to either stimulate the salivary glands to produce more, or really just to alleviate the dryness with lozenges and dry mouth sprays. It can be so bad that I have great difficulty swallowing my food. It's not fun to feel like you are choking when eating all the time. My doc says that there are too many PSMA reactive cells in the salivary glands and the treatment can really damage them. (I think I just have to many other problems in addition to the PC)

[leebeth in reply to maggiedrum]

I am so sorry to hear that! My husband has had no problems at all with dry mouth with Pluvicto, but of course Ac225 it is much more likely. It sounds miserable for you.

[Hidden in reply to maggiedrum]

Are you taking any meds that could cause your dry mouth problems?

[maggiedrum in reply to Hidden]

One or more of my other meds "may" be causing or affecting my dry mouth. I don't think so, or at least not the cause, but may be exacerbated by. I have sent a private message with more thoughts and history about this issue. If my salivary glands are damaged that will exacerbate my dry mouth very much which I want to avoid. My MO gave me a strong warning about it. He seems to think that the radioactive PSMA treatments would cause a big problem for me. I haven't seen that discussed on here except for this time so I don't know for sure. It has been reported in the literature. One thing I don't understand (in the sense I just don't know not suggesting it doesn't happen) is how one specific element isotope could be worse than another.

[leebeth]

Yes, we are aware, which is why we originally had the consult with Dr Tagawa set for January 19. Both his Mayo doctors and his local MO agree that he can’t afford to wait.

We were able to expedite the appt in Turkey and he leaves in a little over two weeks.

Ideally, we would have loved to have participated in the trial in NYC.

We haven’t heard back from Excel, so that option is off the table, also due to time.

I honestly don’t think he could handle travel to Australia, especially as he gets into the timeframe of 3-4 weeks past his Pluvicto. It may not be working enough to stay ahead of his cancer, but he is noticeably improved within 24 hours of his treatment! The last two weeks immediately prior to treatment were very challenging.

[tango65 in reply to leebeth]

I wish you the best of luck with the treatments in Turkey!!

[leebeth in reply to tango65]

Thank you. It is our last hope!

[Seasid in reply to leebeth]

Can you arrange a consultation with Tanya Dorff or someone similar?

Just you are not spending money on something what you don't need. Maybe Eugene Q? Sartor etc?

[leebeth]

Tanya Dorff is not doing any work with Ac225, at least that I can find.

Kwon is who referred us to Turkey. MRIs, scans, etc show us that Pluvicto is failing.

We can’t wait four more weeks to get in somewhere.

The flights are purchased and the non-refundable down payment is made. He is definitely going for at least one treatment. Our local MO is a community oncologist, but Johns Hopkins trained, and sits on ASCO committee with Tagawa and he is 100% in support of going for this treatment. If we had more time, he would like us to explore the clinical trials with Tagawa, but we don’t.

We have, in the past, consulted with John Hopkins and with U of Chicago, so those are easy consults to get.

I think we could, given time, see if Tanya Dorff or Dana Farber have something to offer, but right now we need to act.

The one thing I would be interested in pursuing is local radioembolization of his extensive liver mets. Kwon was opposed but our local MO thinks he doesn’t have much to lose.

[Seasid in reply to leebeth]

clinicaltrials.gov/ct2/resu...

[leebeth in reply to Seasid]

Thank you. We are aware of these. The issue is, it takes time to be evaluated, approved, and treatment started. We don’t have that kind of lead time. His runway is short, according to his team. We do have an appt on Jan 19 for evaluation, but that would mean minimum of a few more weeks to get started.

He is receiving treatment in Turkey before that. Once he has had one dose, he won’t be eligible for the trials.

[Seasid in reply to leebeth]

What is the dose in Turkey?

[leebeth in reply to Seasid]

The dose is 7-8 Mbq

[tango65 in reply to leebeth]

Talk with Dr Scholz, he has used the microspheres to treat liver mets.

prostateoncology.com/prosta...

[LastMohikan in reply to leebeth]

You will get perfect assistance from Prf.Dr.Mrs.Kezban.

this hospital has connection with Johns Hopkins Medicine.

My MO and RO is in that hospital.

Good Luck.......Umit

[leebeth in reply to LastMohikan]

Thank you! That is so reassuring! So far they have been very helpful.

[Realistic]

God bless , l hope the treatment works for your dear husband. My love 💓 SheilaFxxx

[leebeth in reply to Realistic]

Thank you! ❤️

[maggiedrum]

Sorry all. I did not want to post the above since it involves personal issues not related to the PC discussion here. I meant to send it as a personal message and this was an artifact.