My FIRST Lu-177 infusion !!

[whatsinaname]

Hi Guys,

I just completed my FIRST Lu-177 infusion on the 23rd of April, less than 42 hours back. I am feeling fine (as of now) with no pains whatsoever.

If anyone can answer these questions, I'll be highly obliged.

First, I plan to get my PSA tested every 15 days to see whether it is falling or rising or the same. It was 16.02 just before the infusion of Lu-177. Is 15 days OK or should I do the tests only after 30 days ?? I pay for the tests myself and hence do not need a doctor's permission to have them.

Second, if my PSA is rising after about 1.5 months, I might have a PSMA PET-CT scan done to determine whether the mets have decreased, increased or are the same. Is this OK ??

Third, I am definitely going to do a second infusion around the 23rd/24th of June. But, whether I do anything further will depend on whether my subsequent PSA readings are falling or rising + whether my next PSMA PET-CT scan is normal or not ?? Is this OK ??

Unlike "chemo" (where I had 6 cycles) I do not want to drag this on to 3/4 infusions, if it is obviously not working. Hopefully, this will work as I am PSMA avid. Please advise.

I have also been asked to completely discontinue Abiraterone and Eligard at least until the Lu-177 treatment is completed. Is this what you guys have also been asked to do ?

My treatment is being done in Bombay and everything went very well, better than expected

Please do reply. Thanks, Guys.

Carlos de Souza.

25th April, 2019

09.49 IST Bombay.

[MichaelDD]

Hopefully all works well!! Keep us posted. Michael.

[whatsinaname in reply to MichaelDD]

Thank you very much, MichaelDD.

[cesanon]

Where are you getting the lu 177

[whatsinaname in reply to cesanon]

I am getting it done at the Jaslok Hospital, Bombay.

Jaslok is considered to be one of the best hospitals in Bombay, India.

[Hidden in reply to whatsinaname]

Bombs away in Bombay amigo . I want you healed .

[whatsinaname in reply to Hidden]

Thank you, Lulu700. You are a kind, decent guy. {see, flattery will get you everywhere }

[Hidden in reply to whatsinaname]

Kind? Thank you? Decent ? To be determined ? I bond with people . We are all tied at the hip brother .. part of the same chain...Rest up heal up . Recover well . Bribery works too. Being broke ,flattery is all I’ve got . Take care in Bombay , if you ever find yourself in the mood post a pic please of that exotic local . Peace over the seas.

[whatsinaname in reply to Hidden]

Thanks again, Lulu700.

All the very best to you.

[Hidden in reply to whatsinaname]

Speedy recovery ....

[Tall_Allen]

Don't they monitor you with Ga-68-PSMA-11 PET scans?

I think you are looking at PSA too often. You don't know whether PSA is increasing due to dead cancer cells, and whether it's increasing due to failure. You have to give it time.

[whatsinaname]

They told me that a PSMA PET-CT scan would be required to be done ONLY after they finished a course of 3 infusions ie after 4 months minimum.

I would like to have a PSMA PET-CT scan done earlier, say after 45 days, if my PSA is rising.

In any case, I pay for these scans myself and therefore can get them done as often as I want to. My question is : What is the minimum time period that should elapse between two consecutive scans ?? Is it 30 days/45/60 days ??

[tango65]

I had a Lu 177 Psma treatment and they asked me to have a PSA measured 6 weeks after the treatment. Even if you PSA does not go down with the first treatment you sbould get the second treatment and then you could have a Ga 68 psma pt/ct 6 weeks after the second treatment and see what is happening with the cancer.

[whatsinaname in reply to tango65]

Thank you very much, tango65.

I have been asked to have my serum PSA checked 2/4/6/8 weeks after each infusion.

PSMA PET-CT scan they wanted done only after the completion of 3 infusions.

What you say makes sense. Thanks again.

[tom67inMA]

It's awesome that you're tolerating the treatment well. I really hope it delivers a knockout punch to the cancer!

[whatsinaname in reply to tom67inMA]

Thank you, tom67inMA.

I too am really hoping that somehow my luck changes and this new treatment works out.

I have also gone in for genomic mapping with Foundation One. The detailed results should be with me and my quack by end April. The results are coming in from the US couriered by Fed Ex. Fingers crossed.

Thanks again, tom67inMA.

[GP24]

"Second, if my PSA is rising after about 1.5 months, I might have a PSMA PET-CT scan done to determine whether the mets have decreased, increased or are the same. Is this OK ?? "

You can do that, about two weeks before the next cycle is planned and then decide if you want to continue. You can also do it if you just want to observe the results of the first cycle. However, since the side effects of the therapy are low, I would do the second cycle. If you are definite that you will have a second cycle you can save the money and get a PSMA PET-CT eight to ten weeks after the second cycle.

"I have also been asked to completely discontinue Abiraterone and Eligard at least until the Lu-177 treatment is completed. Is this what you guys have also been asked to do ?"

Usually not, but: a long term ADT will reduce the PSMA expression and could make a PSMA therapy less efficient. That is probably the reason for this recommendation. An alternative would be to switch to 150mg Bicalutamide during the PSMA therapy. This may increase the PSMA expression instead.

But I would not recommend to discontinue ADT+Zytiga after the PSMA therapy, i.e. after the final PSMA PET/CT. Sometimes doctors recommend to discontinue to see how well their treatment works without bias from a concurrent ADT. This is not in the interest of the patient.

My personal opinion is that the PSMA therapy is a type of radiation and there are lots of studies which show that adjuvant ADT improves the results of radiation. None for PSMA yet.

[whatsinaname in reply to GP24]

Fantastic detailed reply, GP24, thank you very much indeed.

Your detailed reply answers ALL my queries more than adequately. Much obliged to you.

Cheers, GP24.

[Hidden]

Ole in Bombay , Carlito. May the treatment do you well and work as designed . Many prayers to you from across the world. 🙏

[whatsinaname in reply to Hidden]

Thank you, Lulu700.

[Jbooml]

Thanks very much for posting prestissimo

Well Carlos..I couldn’t be more happy about your painless treatment response in general...you’ve read some of the horror stories elsewise. Remind me..did your ‘quacks’ not scan you with the ga68 prior for a baseline control. This imo is most telling wrt your radiologic response...but all in all a benign general physiologic outcome must mean something....journal everything with the board please.....I’m sure most will be watching like hawks.

I think PSA levels might be misleading but then again one mans APC results mean only so much to another’s.

Be well

Jeff

[whatsinaname in reply to Jbooml]

Yes, I did do a PSMA PET-CT scan about 2 months before the actual infusion to determine whether I was PSMA avid and qualified for the treatment.

I was also asked to do a series of blood tests like PSA, CBC, RFT, KFT, avg GFR, creatinine, serum calcium, ionized calcium, etc, etc, etc. Finally, a renal scan was done before the Lu-177 infusion.

Yes, I am feeling great after the infusion. BUT, I was also feeling great after docetaxel (in contrast to several here). Docetaxel knocked out some of my hair, but I am now growing it back, most of it black at 62.5 Lets see what happens. The genome mapping will also give indications of what to do next.

Thanks, Jeff, for writing. We'll keep in touch.

[Jasonhousz]

Hello, thank you for the information provided, I wish you a smooth treatment, I would like to ask you, how much is the cost of doing this project at Mumbai Hospital, can you tell me, thank you

[whatsinaname in reply to Jasonhousz]

Assuming one did a course of 3 infusions (which Jaslok insists on), the total cost would work out to approx US$ 15,000/- This includes hospitalization overnight for each infusion + board for self and relative + all blood tests+ any scan required. Obviously, the cost of the infusion is included. This is a major portion of the total amount as the raw material is imported from Germany.

The hospital itself is good and the staff very considerate. I was overall pleased with the treatment (and I am hard to satisfy). I would rate Jaslok 9/10. Only Breach Candy Hospital would rate higher at 10/10, but they don't do Lu-177.

I have quoted you a price (which I am paying) which includes everything including PSMA PET-CT scans and ALL diagnostic tests. The added advantage for foreigners is that, after the infusions, they can catch flights to Goa, Kerala, the hill stations of Tamil Nadu and relax and chill

Cheers, Jasonhousz. Enjoy life to the hilt.

[Jasonhousz in reply to whatsinaname]

Thank you very much for your reply, congratulate you again for better news.

[whatsinaname in reply to Jasonhousz]

Thank you for your good wishes, Jasonhousz.

Wishing you too all the very best.

[Bedrich in reply to whatsinaname]

Thank you for this answer, I had the same question. I hope everything will be very good for you. Unfortunately in my country, this treatment is not available even though one of the researchers is Czech scientist. I've been following LU 177 treatment since the beginning and I believe it's a good way.

[whatsinaname in reply to Bedrich]

Thank you very much, Bedrich. So you are from the Czech Republic, are you ??

I have visited Prague in 2005 and enjoyed it tremendously. Lovely people, superb sightseeing & phenomenal BEER !!!

Cheers, Bedrich, enjoy life !!

[Bedrich in reply to whatsinaname]

Yes, I'm from Prague. I am glad you enjoyed your visit here. I wish you the best.

[whatsinaname in reply to Bedrich]

Thank you, Bedrich. All the very best to you too.

[monte1111]

Got my fingers crossed for you.

[whatsinaname in reply to monte1111]

Thank you very much, monte1111.