I am always looking for the wisdom and first hand experience of this prostate cancer think tank. I have 90% decided to go abroad for LU 177 treatment. New dehli to be precise, the reason for my decision was based on affordability, $5700.00 per dose 3 to 4 doses are anticipated , here's the tough part i am not sure if I am eligible, for this treatment, there is a scan Psma negative which determines that and there is a long waiting list in the U.S Ucla to be specific although in india its $500.00, but I have to go to india to find out, could be fun if I am well. Lately I am dealing with some tough side effects. I just sent in my renewal on my passport today and looking into a visa and covid requirements, I never had to get a visa before. This is a big decision always when your life is in the balance. I am very encouraged by the stats for life extension with Lu 177. Feel free to chime in with any insight or thoughts. Dr beers and my oncologist are in favor of this treatment mainly because there's very little left on the table on my 7th carboplatin and cabataxal , and feeling intense neuropathy vomiting and weight loss. But psa going down and just did New bone scan results not in.
I am in conversations with a doc in N... - Advanced Prostate...
I am in conversations with a doc in New dehli india. For the treatment , Lu 177.
Worth a try for sure! Good luck to you. Go see if you are eligible. And if you are, it sounds like several other folks on this forum have had very good success in India. If nothing else, it will be a good adventure and you should have no regrets for trying.
No first hand experience with it, but there are some very detailed posts a few weeks back about good experiences in India.
If you get a metastasis IHC-stained for PSMA, you can get an even better quantitative analysis of how PSMA-avid it is.
I will inquire about that. Is that the same scan at ucla or in India but with the added IHC stained Psma element.
It's not a scan.
Two years ago I had to convince the University of Heidelberg ( when no one here would test me ) that if I was not a good candidate I would just have a few authentic German beers and go home. PSA is >0.1. I did AC-225. Can they do that also? Does the $5700 include lodging ?
Not sure. But lodging seems to be inexpensive. I will ask about Ac 225 is that alternative treatment to Lu 177, was germany a good choice for you and was it 10k per dose like I heard.
Go and get the PSMA scan and then if it looks good get the LU-177! Science is changing all the time. Keep the fight and stay strong!
Pura Vida!
Great decision to get the LU 177. I had mine done in Germany. Make sure that you are not going to eat up any savings in air fare back and forth. Three treatments will take at least 6 months with various scans in the mean time. India does have an excellent reputation having been trained by the Germans. You'll be fine.
I'm curious what you mean about eating up airfare, do I have a choice , I have to fly there and back 3 or four separate times for treatment unless I stay there. Did you get the psma scan done here? In the U.S or in in Germany. Did you also get the ac 225 that I heard of. Thxs
I got the PSMA GA 68 in Germany at the clinic where I had the LU 177 treatment. I did not need the AC 225 since I had not yet metastasized to the bones. LU 177 is very effective for soft tissue tumor and most bone mets and my Doctor usually reserves AC 225 for the more advanced cases when LU no long works. What I meant about airfare is, if there's a big price difference between flying to India versus Germany, it might not be such a bargain. But after rereading your post, that is a very good price in India. I'm sure you could fly first class and still save money. In any case, you've made the right choice to get the LU 177. I had practically no side effects and it works very fast. Best of luck, I'm sure you'll love India.
There is a new clinical trial starting in Houston (at Excel Diagnostics) with LU-177 therapy. Here is a link to the trial: clinicaltrials.gov/ct2/show... Excel also does PSMA-Pet scans through a clinical trial basis. It costs about $4-5,000. I had mine done there in January.
Unfortunately, I did not qualify for this LU-177 clinical trial in my hometown (which was a bummer) because I haven't had any previous hormone treatments. I'm going to New Delhi on March 10 to start my LU-177 treatments. I followed the trip plan advice posted by charlesual and it helped me tremendously in getting started. (Thank you, Charles!) Obtaining the medical visa was fairly easy once the consulate here sent me a list of what they required. If you need it, I can email you the list of documents they needed for both me and my partner to get medical visas. I am planning on posting more more after the treatment plan begins. Good luck to you.
Wow thankyou yes, that would be helpful my email is Lightninglegalprocess@gmail.com where in New dehli? I've never obtained a visa before I will look into Houstons Lu 177. Do you also need ac225 as well.
Thankyou
Hello, I just emailed it to you. My PSMA scan did not show any bone lesions, so I don't think I need AC225, but I'm gonna leave it up to Dr. Sen to decide.
Hey dude , If you are talking to Dr. Sen and Manav and have questions about your visa and travel message me...I completed 3 rounds....Logistics for non pilots can be a little intimidating and I understand...If you do everything in steps it is easy..I equate it to opening up a new box which contents needs to be assembled at first glance you are taken aback but as you work through it all comes together..where are you currently living ? San Jose? Blue Skies
I live in oregon on the north coast. I tried as recent as last night to start the e med visa process although at the end it stated they were not processing at this time and they will contact me via email when they resume again. I have spoken and e mailed Dr Sen and she gave me a quick low down. The problem is it indicated your travel companion needed to be a blood relative. What about my wife or buddy that wants to accompany me. Yes I have some serious questions. Would you be opposed to calling me, so I can wade through this at some point. With your first hand experience it would be extremely appreciated. Thankyou.
Best of luck in New Delhi. I was very close to having either Lu177 or Ac225 with Dr. Sen. I very well may some day. I decided not to since I had had 30 tumors or so melt away with the APCEDEN vaccines made about 10 minutes from Dr Sen. I had been stable for two years but still had my primary. I opted to have my prostate removed in Delhi, and have more vaccines made sense we know they at minimum keep me stable. When and if it comes back I will be seeing Dr Sen. I spent around 6 or 7 months on the ground in India. This was pre-pandemic, but I stayed in AirBnB’s for the most part. Stayed with families and had my own area. $30 a night for very nice places. They’ll cook for you at most places for a small cost. Very hospitable people. Plan on going back before long. Newark to New Delhi is not that bad if booked a bit in advance. About $1,000.00 round trip on average. I fly for work so at least always had exit rows. It would be tough without extra room since it’s around 14 hours one way.
Just found this thread. Been in communication with Dr Sen. Can you say a bit more about APCEDEN? what is it? How do you make it so fast? Would like to know a bit more about why you had your prostate removed over there.
I had my prostate removed there for being able to save part of it for the vaccines. It made a big difference in how I felt. I just needed to get it out for everything. Been lucky. It’s just a likely way to give you more time is all. I was in bad shape when I first went there. It was everywhere, including in bones etc. It has given me 4 extra years and my PSA was around .02 last time. I very well will be going for Lu177 when it really comes back. I was very lucky and needed more to exactly make it to now. Seems like Abiratetone has helped me over and over. It was non-detectable for a few months besides spending 40 days in the hospital for everything. It wiped me out for treatment except for COVID treatment since it gave me a stroke etc. It is now I can do what I want again. It was ugly. Best of luck if you go!!
Looking for more info about APCEDEN.
So the treatment should basically be as effective as PROVENGE but 5X less the cost. I believe it was developed at MD Anderson in Houston but is done in India at FORTIS. I'm there (India) now planning on doing lu177 on Monday but I did talk to the Oncologist here at length about APCEDEN and I'm not sure if it would have been a better call for me (as you can see in my reply to Fuzzman77 below.)
So here you go...
Its probably $18K (so she estimated...for everything). It generally should stop progression for a year with the following qualifications: It really works but for low volume disease, at any stage. Low volume is 3 or 4 lessions, I don't think it implies a low PSA is necessary. If high volume it lasts less long 3 to 6 months. See fuzzman77 for how well it worked for him! It works best in conjunction with other treatment. It requires cancer tissue from say a biopsy that they can do here that includes the $18K cost (you have to have something to biopsy is implied.) You can repeat it. It has no side effects. If you do it here you get the biopsy, you then spend like 3 hours doing something and then they make the vaccine batch over 8 or 9 days, generally its 6 shots and they have it sent back to your country and your Oncologist there can give you the shots every 2 weeks. (I could be a little wrong about that but that is more or less it)
I do like the idea of this. It is something I will save for the future. I do like the treatment I get from Dr Sen and my conversation with Dr. Karanth. You can consult with Dr Karanth via zoom I believe (and you really should) . The fee was nominal that I paid to talk to her yesterday. The email below was from a few weeks ago. If you have more questions, or want to know how to contact, just contact me. By the way I have the BRCA2 gene too.
From email from Dr Karanth to me, maybe a month ago:
I read through your case history. You had a query regarding vaccine prepared from one's tumor tissue. In India, this vaccine is called APCEDEN. This could be used in your case along with the Lu177 therapy you have planned with Dr Ishita Sen, as it works best in combination with another treatment. The procedure is fairly simple.
The preparation of the vaccine involves a fresh biopsy of tumor tissue which is then confirmed for presence of cancer cells on histopathology, then frozen and antigen [Protein] is extracted. You will receive growth factor (G-CSF) a day prior to leukapheresis to mobilize the new cells from your bone marrow. The following day you will undergo leukopheresis to remove a total of 100mL volume of Peripheral blood mononuclear cells (PBMCs) from which the monocytes are separated. These Monocytes are then differentiated to immature dendritic cells. These immature cells are then exposed in a culture medium to tumor tissue protein extracted previously. On the eighth day of culturing, mature dendritic cells are harvested and vaccine doses are prepared. This entire process requires one day of hospitalization. After vaccine is prepared it is being administered over 6 doses every 2 weeks. There have been multiple case reports of patients responding well to this therapy even with high volume disease however I recommend this for better response in patients with low volume disease.
If we plan to do this in along with Lu177, I would also recommend sending the biopsy tissue for somatic BRCA and HRD pathway testing as it could give us other additional treatment options for the future if needed.
Hi Fuzzman. APCEDEN can be found at APCEDEN.com Very interesting and can be done with or without other things. They do say it does work better when done with other types of treatment, but think Pca is probably one that is that for now. Best of luck if you go there.
Not under consideration for me.
Thanks for the reply! So you kept getting the vaccine for 4 years?
Did each vaccine batch basically give you a year so you did it 4 times? Talking to Dr Karanth here at FORTIS you would need to have a tumor or something to do a biopsy to get something to work with (to develop the vaccine) but it might only last a year so did you have to get 4 biopsies and a prostateectomy for 1 of them? I guess you could do it with 2, because you can freeze stuff for a year then make a second batch I suppose.
You make the vaccine route sound very interesting and favorable! It sounds good for you that you still can save lu177 for the future. I might be making a mistake by not doing the biopsy here and trying that. I am instead going for lu177. If the disease returns and a lesion is is big enough for a biopsy to get material. I might try it. The Doctor Karanth tells me it is roughly $18K for APCEDEN. $1K for biopsy+freezing it for later. If you do that first I guess its $17K for the rest of the procedure. I suppose Lu177 is comparable in cost to APCEDEN because lu177 generally is done 3 times. Efficacy is tough to measure.
As you can tell, I made the trip here this week. Was your several months in India, "on the ground" for a particular treatment?
Found website with info about APCEDEN - apacbiotech.com
I had sent several email requests to APAC Biotech requesting info about APCEDEN. They initially responded. But when I asked about its effectiveness for treating prostate cancer and how many patients had been successfully treated, I got no response back! 😒
Developed in USA I doubt it.
Forties doing it I doubt it.
I am here in Gurugram and had been following this.
Please go in more details.
My advice.
They do it at FORTIS. I talked to the Oncologist who tried to convince me of it. The name is above. If you are there you can just go and talk to her about it. Its real, you don't have to believe me. Developed in U.S... I think so but it really doesn't matter. I don't think you can get it in the U.S. I already summarized everything I know so I have no more details. I did not go this route. I think Fuzzman did though.
Contact Rajiv Gandhi Cancer Research Institute. This is a large and reliable institute which specialises in cancer treatment. They have done many Lu 177 treatments and I think more trustworthy. You can google them for the contact details. This is a good time to be in Delhi where the Institute is situated. There are a few good hotels nearby that are convenient. I went there for my PCa initial investigation.
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Lu-177 for the win!!
