What to do after LU-177 and AC-225

[lewicki]

After my fourth treatment at the University of Heidelberg with a PSA 0f 0.1 what supplements or treatment ( High T ) should I consider to keep the demon from coming back. I still have an untreated prostate gland. Doing Fermagone now and would like to stop it. Time to enjoy life. Original diagnosis June 1999. Thank you

[6357axbz]

don’t know your background but I’d say have either RT or RP to your prostate. Debulking

[lewicki in reply to 6357axbz]

I went to Germany in 1969 for trans urethral hyperthermia. PSA was 6 then stayed good to 2013 came back did hyperthermia again , did not work went on ADT and Zytiga, started to rise did two chemos, waiting to get a PSMA pet scan to go to Heidelberg, three times last year once two months ago PSA now 0.1. Karmanos did a trial ESK 981 it failed, they did three biopsies to lymph nodes , got EDEMA blood clot in leg up to groin, had two clots to brain, lost all left side vision both eyes, two strokes. Edema gone after first trip to Germany in May last year. In 1959 surgeons wanted to take nerves , I decided to try St Georg in Bad Abling to have some kind of sex life. Dr Haberkprn at Heidelberg sai I tested very high to kill my cancer " we will kill your cancer like butter in the hot sun".

[Tall_Allen]

You can't have T with symptomatic metastases. What was your experience withchemo?

[lewicki in reply to Tall_Allen]

PSA when doing ESK 981 trial went to 740 from 125, down to 580 by itself when I stopped ESK981, two chemos chemo took it to 265 , this is when I started treatment in Germany.

Urologist here who I do not have much faith in suggested I do high T. I decided to go to Germany.

[Tall_Allen in reply to lewicki]

Maybe ask for a current biopsy of a metastasis? Did you have a germline test?

[lewicki in reply to Tall_Allen]

Do not have br1 or 2. Not to inclined doing any biopsies after my past experience of blood clot to the brain two strokes , loss of eyesight both eyes to the left side.

[lewicki in reply to lewicki]

I have listed at least 20 different supplements that men on this site are taking. Way to expensive and I think just a feel good to take them Although BIRM and a Cholera shot might be something to do.

[Kevinski65 in reply to lewicki]

I live in NH, close to Mass , where can I get the cholera shot?

[lewicki in reply to Kevinski65]

In the US you need a prescription. Then I thing a local Drug store chain can do it. May need to say you are traveling to South America to fool doctor to get script.

In Canada no script, drug stores do them. I think you can have it shipped from Canada.

[Tall_Allen in reply to lewicki]

If you cant have a biopsy, you can have a cell-free DNA test (like Guardant 360 or Foundation One CDX).

[lewicki in reply to Tall_Allen]

Never heard of these and my oncologists most likely have not either.

But will check it out . Good advise . Thanks

[cesces in reply to Tall_Allen]

Tall_Allen, there is apparently a case for treating metastases with really high testosterone.

I myself would first try bipolar androgen treatment, before even considering that as an option.

But the last time I talked to Sartor at Tulane he was an advocate for treatment with clinically administered levels of high testosterone.

Under what exact indications, I don't know.

[Tall_Allen in reply to cesces]

To my knowledge, no one other than Liebowitz gives sustained high testosterone.. He has not published since 2009, and even then there were huge problems with his data (see below).

Sartor is offering BAT to select asymptomatic metastatic patients, not sustained high dose T to my knowledge. This is dangerous stuff and has to be monitored closely. Many men get a lot worse with it. And to my knowledge, there is no way of deciding in advance who will benefit.

This describes what we know so far:

prostatecancer.news/2016/09...

[cesces in reply to Tall_Allen]

"This is dangerous stuff and has to be monitored closely. Many men get a lot worse with it. And to my knowledge, there is no way of deciding in advance who will benefit."

I don't disagree. My reservations are the same.

But Sartor, after the BAT study appears to believe it will work. It would no be unreasonable for him to believe in it, but not yet treat with it.

In my opinion they first need to turn BAT into a predictable treatment before exploring the viability of pure testosterone treatment.

[lewicki in reply to Tall_Allen]

I see an oncologist who is willing to do it. I know gutsy or ?

[lewicki in reply to Tall_Allen]

Thanks for the repoet.

[GP24]

Do you still have symptomatic bone metastases? What was the result of the last PSMA PET/CT, any visible cancer left?

[lewicki in reply to GP24]

No organ cancer and only bone met to Sternum was gone after 2nd treatment in Germany.

no other bone mets . Much involvement in lymph nodes in the groin. PSMA scan does not see any cancer although I think the lymph nodes are enlarged. Most likely the cancer is dead but still has not receded.

[George71 in reply to lewicki]

Hi lewicki,

You have done really well overall considering..

What was the treatment drug you got from Dr Haberkprn at Heidelberg that worked so well. lu-177 ? It sounds like it may have knocked it all out considering you still have a prostate ... I think I would go for the continuous super high testosterone

Thanks,

George

[lewicki in reply to George71]

LU-177 and AC-225. Both are radioactive isotopes developed at the University of Heidelberg and is available in many places in Germany. I found this treament searching the net almost two years ago.

[Patrick-Turner]

Hi lewicki,

We don't know what Psa or Pca status was before you had Lu177 plus Ac225. I assume you may have got a blend of both radioactive substances. I'll have to assume your Psa of 0.1 now is lower than when you began theranostic treatment. 0.1 is quite low, so now is the time when you could sit back and do nothing. Is Fermagone = ADT ? If so, it may be keeping Psa lower than it might otherwise be if you were not on ADT.

I have been on ADT with Lucrin since April 2010, after doc found he could not remove my PG after opening me. On its own, Lucrin failed in 2016. But I did get 6 years of Psa suppression, but during that time Pca mets all grew bigger, but gre slower than without ADT.

In 2016 I had added Cosadex, then Zytiga in 2017 which suppressed Psa while number and size of mets increased. Chemo failed in 2018, hence my move to Lu177, and Psa went from 25 before to 0.32 12 months later, then back up to 30 last July. But all soft tissue mets are gone, so I have only mets in bones, and I am presently having more Lu177. Psa went from 30 to 8.7 in 8 weeks, and maybe it keeps going low.

I also had Xtandi after 3rd Lu177 in April 2019, and I think this add on to ADT had effect of reducing Psa a lot, masking the Psa reduction I may have had without Xtandi.

So docs kept me on Xtandi because they think it makes Pca express more PsMa thus mets attract more Lu177+ligand to blast Pca cells. I also have had 10 days of Veyonda to also increase PsMa expression. Nobody is measuring just how well all this is happening, but Psa is going down well after just one shot. Last year first 2 shots Lu177 hardly lowered Psa at all. 25 to 17.

Unless you prove otherwise, letting normal testosterone to return may boost the growth of Pca which your recent Lu177 + Ac225 did not kill.

If you say your PG has not been treated, well maybe you don't understand that the Lu177 + Ac225 has actually treated it if the PG appeared brightly in PsMa Ga68 PET+CT scans.

Average mean time for 4 shots of Lu177 to work is 14 months, ie, if Psa was say 30 before getting Lu177, it may be 30 after 14 months, with maybe a lower Psa at around 7 months. But mean 14 months means equal numbers of men will have a longer or shorter time extension to their lives with Lu177; some may not respond well at all, other may get 5 years. Lu177 can be repeated, hence I am having more now, and maybe if Psa nose dives to very low level over next 12 months, I still may get more in 18 months if whatever is not all killed now by Lu177 grows back again. Pca is like grass around your house, ya hafta mow it down, and then its no use mowing it again for quite some time. Then you mow it again, and maybe again, until you have accumulated a limit of effects due to radioactive nuclides being in your blood stream. If too much Lu177 or Ac225 is used, you can develop Leukemia, and that's real hard to treat. I know blokes who have had 7 x Lu177 shots, still alive after doing that in 2016 at a trial of Lu177 at Peter Mac Hospital in Melbourne.

My doc at Theranostics Australia said there is a man in Germany who has had 10 shots Lu177.

But I don't know if all those shots were same size. A man could have more shots if dose size was reduced.

You seem to have done OK to last to now after Dx in 1999.

If I get to limit of what Lu177 can do for me and Psa begins to rise fast, I don't want more chemo because its side effects have been the worst of all treatments I have had, plus, it did NOT damn well work.

I had DNA analyzed, and Brca1+2 gene faults were found, and no faults were found in another 10 genes suspected to make Pca likely, but also likely to make PARP therapy work with Olaparib.

I may have to go to Ra223. It is not a nice nuclear thing to have, but it goes where calcium is being uptaken in bones at mets, and my doc at TA said he didn't like that, probably because it makes bones brittle, so ordinary life activities may produce a broken bone.

I don't ever expect to get remission, but i can say I much enjoyed time from Nov 2018 to now with Pca under control and not being an immediate threat to my QOL.

For most of that time I cycled 200km a week. So I am doing OK at 73 yo.

Not having any Testosterone may be making bones weak, but I'll have a bone density scan soon, maybe have a shot of Xgeva.

[lewicki in reply to Patrick-Turner]

We are both tough Hombres. Can you get AC-225 down under? I do have a Didgeradoo.

[Patrick-Turner in reply to lewicki]

Yes, from Theranostics Australia.

Patrick Turner.

[lewicki in reply to Patrick-Turner]

PSA 20 years ago was 6. When on the ESK981 trial PSA was 740 . Met on sternum and groin lymph nodes. Went off trial PSA went to 580 , two chemos went to 265 went to Germany start point 265. First trip was June 2019. Was on Xtandi prior to ESK981. It failed went on trial , went to 740. Trial failed.

[lewicki in reply to lewicki]

Saw new urologist. Previous one retiring . Been seeing him for 21 years.

Had a DRE and doctor said no lumps and gland is very small. I asked can I go off ADT and he said it was my decision that I probable know more about the decease than him. See you in six months. I decided to take my Fermagon shot which will give me a month to decide about what things to do to hopefully keep the demon in chains.

[Ybor]

Visited Heidelberg in 2018 received one dose of Lu-177 Plus Y-90. PSA in C 11 scans continued to improve until September 22. Was on Lupron and Xtandi during the past two years.

Obtaining PSMB scan October 5 and will be leaving for Heidelberg as can be arranged.

Question —what processes did you go through to get to the hospital ,check in quarantine, etc.

we are landing at Frankford. Thanks for any information you may be able to provide

[lewicki in reply to Ybor]

German customs wants covid-19 test 48 hours before entering Frankfort. Having this did not require quarantining. Took private transportation Frankfort to Heidelberg, About an hour trip . We ( daughter Heidi went with me, she saw some of Germany while I was locked up for two days ) Stayed at The Arthur hotel in Heidelberg about 130 EUROS nightly, eat food at hotel. I had German meals at hospital. I understand AC-225 only available every other month. I was there in July so next available is in November. Are you getting AC-225. You need a strong letter from the doctor at Heidelberg that it is life threating that you to be allowed entry to Germany for health reasons as Americans are not allowed to travel to Germany. Seek airlines that fly to Frankfort as this was a problem . Fly United on a Lufthansa airplane depending on where you start may need transfers and lay - overs. I flew Detroit to Chicago three hour layover than direct to Frankfort. I am happy to help so feel free to ask further questions.

[lewicki in reply to lewicki]

Correction, Hotel name is the Chester. Chester-Heidelberg.de Transportation is TLS-Heidelberg.de. Heid offers to help if needed.

[lewicki in reply to lewicki]

Heidi

[RobLee in reply to lewicki]

Many thanks on your tips for travel to and from Germany especially the need for letters regarding the treatment. We are now in Heidelberg and have been informed that most everything will be shut down for a month. I am scheduled for a Covid test and treatment next week. We had a bit of a hassle with the hotel Marriott as the new regulations were initially interpreted to exclude medical treatment. I had the doctor at Heidelberg medical call the hotel and also had the letters proclaiming our need for treatment. My daughter in the US also got on Twitter and complained about the treatment we were receiving from the hotel. Social media is clearly affective -the next morning I have emails from Marriott corporate and the local hotel. Thanks to you I had both letters from Mayo and Heidelberg medical.

[lewicki in reply to RobLee]

Good news you are to receive the treatment. If you see nurse Thomas tell him I and Heidi say hello. When you return US customs will pick up your radioactive signal and hold you till they check you out. I was challenged at Detroit Metro airport all four times . One security officer said I looked like plutonium. Usually takes 1.5 to 2 hours detainment. If you drink beer tell them at the hospital I was giving a bottle of a great German lager. Just one for dinner. Try the white bread with butter and honey.

Let me know in the future how the treatments worked. My PSA is now 0.08.

[Ybor in reply to lewicki]

Thanks for the info and good luck to you

[j-o-h-n]

1999,,,, wow!!! You're a great fighter..... would you please tell us your age? Thank you and Keep fighting............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/04/2020 6:18 PM DST

[lewicki in reply to j-o-h-n]

79 80 in April

[Ausi in reply to lewicki]

Pretty good! But can you play the Didgeridoo you have?

[lewicki in reply to Ausi]

Whilst I try to but the breathing in and out needs to be accomplished. Although I can make some interesting sounds.

[j-o-h-n]

Thanks for the info...... Born 1941 you're a war baby...... congrats....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/04/2020 9:28 PM DST

[lewicki]

PSA is now 0.08 with a non treated prostate. I have read where your PSA is 0-2.4 you do not have cancer and having an untreated gland. Appears you can have a small amount of PSA and not have cancer. my oncologist suggest I go off Fermagon enroll in physical training and am cancer free , live 10 more years. Am 79 now. Does going off Fermagon allow the cancer to return with a vengeance. This is than a vacation and go back on drugs as soon as I see the PSA go up. This would be somewhat like BAT. Or it could be a mistake to go off ADT. No ADT sure is desirable.

[lewicki]

Two years later PSA is < 0.04 and still no adt. Had a pet scan results are no cancer found. YaHOOO !