Update.

[Jackpine]

I haven’t posted for some time as this damn disease keeps me busy going to Doctors. The good new is they have kept me going for 9 years next April.

After failing all available treatments, my urologist oncologist recommend a treatment in Turkey with AC225. To date I’ve taken two rounds of AC 225 with a third round scheduled for September.

My results have been remarkable. PSA at start of treatment was 140 current PSA is 16, can we bring the PSA to and undetectable level? Only time will tell.

Either way they continue to develop new drugs and prostate cancer continues to find workarounds and I sure the cure is out there. In the meantime we live our best lives.

Jack

[Oldie68]

Thank you for sharing your experience. Good luck in getting the PSA as low as possible.

How easy was it to get the approval and treatment in Turkey?

[Jackpine in reply to Oldie68]

The facility is well run and has relations ship with John Hopkins univ.

[Grumpyswife]

It seems so sad that one has to travel all the way to Turkey to get this treatment. Maybe you always wanted to go to Turkey anyway.

Very happy to hear from you and that you are having great results. Please share as many details about the treatment as possible.

Thanks.

[PlaysBassForFun]

Great to hear T! Looking forward to my next result. Heading up north early September.

[CJ4J]

Good to hear from you Jack, we were wondering about you. How are your blood counts doing with the AC 225. I think you have the same urologist as my husband. He suggested going to Turkey as well this week.

[Jackpine in reply to CJ4J]

I think we do have the same urologist.. My hemoglobin is running on the Low side but more worried about magnesium as it continues to be low so I’m getting magnesium infusions about once a week.

[CJ4J in reply to Jackpine]

Sorry to hear about low Magnesium. Would soaking in Epsom salt help? My husband's platelets are very low, almost didn't get his 2nd Pluvicto this week. But, Dr appealed to those in charge and they allowed the treatment. He fights for you when no one else will. That's probably why you're still here 9 years.

[keepinon]

Can I ask , Why Turkey? Good luck on continued good results!!

[Jackpine in reply to keepinon]

That’s what my Dr. Recommend and he had the contact. Cost was also very effective.

[garyjp9 in reply to Jackpine]

Glad to hear that this treatment is working for you. Who is the u.s. doctor who recommended?

[Jackpine in reply to garyjp9]

Dr. Eugene Kwon at the Mayo Clinin.

[garyjp9 in reply to Jackpine]

Thank you.

[HopingForTheBest1]

Hopefully we live long enough to benefit from that yet to be found curative treatment.

Do you have to keep going back to Turkey for AC225 treatments? Not available in US?

[Jackpine in reply to HopingForTheBest1]

Yes we do have to rely on Turkey, I find the people very welcoming. We have already done two trips and have two more to go.

[HopingForTheBest1 in reply to Jackpine]

Is there something in particular about your medical bio/background that led your doctor to recommend this treatment option? Or is it because you have now failed all available options, including clinical trials in the US?

Best of luck to you.

[Jackpine in reply to HopingForTheBest1]

For me I look for docs that have and opinion even on new treatments. He listens to me and is very frank. But he lets me have the final say. For this treatment it’s only available in limited production. Treat time on average 4-6 weeks and payment for the material is upfront cost. About $4k usd

[leebeth in reply to Jackpine]

$4K!! It has gone up considerably. We were quoted $18K, with a price increase coming. My husband’s treatment is January 18, first one.

[Tall_Allen]

Congratulations! Do you know which ligand they are using with Ac225? How is it affecting your salivary glands and tear ducts? Here's some info on protecting them that you may find useful:

prostatecancer.news/2021/01...

[Jackpine in reply to Tall_Allen]

I will hav to check my travel documents

[Seasid in reply to Jackpine]

Was the ligand J951? Did you have side effects from the Actinium 225 treatment in Turkey? Which side effects did you have?

Do you have dry mouth?

[nobaday]

Great results so far! How much $$ for each infusion.

How many weeks apart?

What dosing?

Any dry mouth or actions to minimize dry mouth prior to infusions?

Have you had any Lu177 infusions.

Were you having a glass of wine a couple of hours after infusion?!

I’m planning to go to India for likely 2 doses Lu177 and one dose Ac225.

[Seasid in reply to nobaday]

Maybe you can start a post about your trip to India.

[nobaday in reply to Seasid]

Got on a Lu177 trial here in Vancouver Canada. Otherwise India was where I was going as cheapest private option and other radioligand Ac225 and now Pb212 being used there.

[Seasid in reply to nobaday]

How many Lutetium infusions will you get in Canada? I believe your lifetime radiation numbers are limited to 6 infusions.

In India you were planning 2 infusions of Lutetium177 and 2 infusions of actinium225.

Lutetium is Betta particle emiter while actinium 225 is Alpha emiter.

Alpha emiter has stronger effects on the cancer and radiation injury is less.

Therefore are you sure that 6 cycles of Lutetium is what you want? I don't know. Can you ask someone more knowledgeable about this?

[Brysonal]

Great to hear. I travelled for my Lu-177 every 4 weeks for 3 rounds so know what it’s like ( UK to Finland for me so not so far)

Did they ice your salivary glands and what gap are you having between infusions.

I followed up with 3 x Docetaxel in case of any PSMA negatives which seems an unusual pattern but both my oncos were happy with that plan.

Well done Turkey I say!

Keep us updated won’t you!

[nobaday in reply to Brysonal]

I was thinking following up with BAT rather than chemo which is not very targeted and not good side effects. What dude effects did I have with 3 chemos? And what did scans show after Lu177 and after chemo?

[Brysonal in reply to nobaday]

I posted my full scan on my bio so you can see post Lu-177 and Docetaxel. The reasoning for Docetaxel is in case of any PSMA negative cancer cells left after Lu-177 knocked out the PSMA positives. Nothing more targeted available and Docetaxel does kill. 3 rounds for me was a walk in the park tbh.

After my 6 infusions my onco in Finland did SBRT on T9 which had been my biggest Spinal met and full pelvic radiation followed by 2 x brachytherapy .

I’m undetectable now ( 4 month bloods last Friday) but on Degarelix and Apalutamide atm so no idea what’s done what but this time last year I had bone mets popping up everywhere and rapidly doubling PSA. Still no symptoms for me and still believe the science will come!

[nobaday in reply to Brysonal]

I see you are English! I grew up in Hastings but moved to Vancouver Canada in 1984.

So interesting you paid for Lu177 and went to Finland outside SOC. But it’s working for you!! There was one guy on this website who went from US to Germany for Lu177 outside SOC soon after we were both diagnosed and hormone sensitive 5 years ago. I assume he is still doing well . I was hoping Zytiga would keep me going until Lu177 approved in Canada/US but did not quite make it. Lu177 just approved end of Augustc2022 by Health Canada. I had my first of 6 Lu177 infusions 2 weeks ago on clinical trial comparing Lu177 vs chemo. Otherwise I was going to India for Lu177/ Ac225/ Pb212.

So now you are doing Apalutamide and again ‘outside of SOC? I understand you want to keep any non PSMA avid cancer cells at bay. That’s why I am asking about and thinking about BAT being a possibility after Lu177. And this could give good side effects as opposed to the bad chemo ones… you presumably lucky with good chemo toleration.

I guess I should follow you now… keep posting!!!

[Brysonal in reply to nobaday]

Yes I am from England but the Midlands! Honestly, I don't know whats done what for me as I pretty well left nothing on the table and definitely took a SOC plus route. 4 months undetectable and still hoping 'the science is coming' so I can have my T back! Asked abut the OVM-200 vaccine trial today!

BAT is v interesting to me but neither of my oncos suggesting it atm so I will follow back!

[nobaday in reply to Brysonal]

And what was response to OVM-200? Seems a little early to risk going into a Phase 1, when you are healthy and with pretty good QOL.

Any data /reports from people on this trial?

[Brysonal in reply to nobaday]

Only agreed to a conversation and maybe screening atm. I wouldn't be considering anything like Car-T of course- too risky but this vaccine feels worth a convo.

First vaccines given last November so I guess nobody badly impacted yet whilst appreciating nothing is without risk.

I wouldn't want to say wait till phase 3 and double blind so maybe get saline!

My genetics prof (I have nothing actionable) from the Royal Marsden in London is convinced a vaccine to trigger the immune system is the science that is coming..

[Seasid in reply to Brysonal]

Can you join the clinical trial at phase Ii?

[Brysonal in reply to Seasid]

first step would be a conversation with the lead investigator. My MO has sent him and note. He may or maybe not ring me!

I’ll update if he does.

Small steps

[Seasid in reply to Brysonal]

Be a little bit individualistic and don't join.

My oncologist is also wants to put me into a clinical trial with Abiraterone plus Prednisone plus Olaparib.

This medications could make me bedridden.

If I am bedridden the PBS would not pay me for Enzalutamide etc.

I would just guard my own interests if they are guarding themselves. After all my family would not let me jump into something risky.

I realized that Hi Fu was also pushed by the British government (maybe I am wrong) but your biopsy was only 3+3 and than escalated.

You can't really know your stage untill your prostate is not out.

They are experimenting with 6 months of intense ADT and than they're surgically remove your prostate in order to see how effective the drug combination was.

ADT+Abiraterone plus Prednisone+Enzalutamide.

When your prostate is surgically removed then they analyse it after slicing it.

Otherwise just from one biopsy cant see the grade of the prostate cancer.

I just had a 68GA-PSMA PET/CT scan and hopefully they will see if I have an active cancer in mu prostate.

I have some urinary tract symptoms and we are trouble shooting it.

My point is that you had a HiFu on the ground that it is only 3+3 Gleason score. It was probably more only that your biopsy maybe didn't pick it up.

In short protect your own interests and wait until the clinical trial progress to at least stage II.

I wish you all the best. It is easy to say no.

Don't even go close.

Avoid them.

Run away.

István Hoffmann

[fmoser]

That’s wonderful! Do you have any information you can share of a website of the hospital and how to go about inquiring treatment there?

[Merlin1960]

Great to hear ! We are now in Bahrain and have a Turkish oncologist. We used to live in Istanbul for 6 years and would be happy to pursue this if he needs more help further down the line . It’s great to see it is helping you … best of luck gaining undetectable..

[swwags]

Jackpine I see multiple questions awaiting your reply so I apologize for adding more. You outlined the cost of the procedure at $4k USD. Can you round out the costs in total (travel, food, ancillary costs related or unrelated to the treatment)? I hope the results continue to improve. Best of luck brother.

[Jackpine in reply to swwags]

I’ll give you rough numbers for my total expense

Air fare can vary significantly by airline and class. Our first trip we took standard coach on Turkish airline. Coach was $2000. Second trip we took Delta to Amsterdam then to. Turkey. Airfare for coach +. $3500 for a total of $7000.

Then 6 nights of hotel no at $98 to a low of $69

Food. Free-breakfast. So only lunch and dinner

Needs to be covered. We averaged $100 for dinner and $35 for lunch

Miscellaneous expenses

$30 day. 30 *6= $180

[Jmadden]

Hi Jack, my brother is headed to Turkey for 225, any tips for us? How are your side effects / dry mouth etc.? Thank You, Jeanne