New Dehli treatment: I SEEm to remember... - Advanced Prostate...

Advanced Prostate Cancer

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New Dehli treatment

oldcars profile image
16 Replies

I SEEm to remember a post about keeping prostate at bay for 2 yr. with vacination treatment in New Dehli ,India but can not find it now. Any one see it?

Thanks

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oldcars profile image
oldcars
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16 Replies
henukit profile image
henukit

You must be referring to this: apacbiotech.com. If so, forume member Fuzzman is the one who used it. I also contacted the clinic directly and they respond quick.

whatsinaname profile image
whatsinaname

Keeping PC at bay for 2 years ?? :-)

I had written to them and they quite rightly promised me nothing. They said it varied from patient to patient (quite true). So, I asked them percentage wise how many patients benefited for how long ?? No statistics with them. They then asked me what did I have to lose ?? My immediate reply ---only INR 1,000,000/- plus six months wasted (I could die during this time). They said anyways you could die, I agreed and said then why not spend that INR 1000,000/- on a peaceful enjoyable holiday instead. No reply from them, only shocked silence :-)

Also having done Foundation One, its clear that immunotherapy will not work for me barring miracles. And, I am not a big believer in miracles :-)

Cheers, oldcars, I hope you have a better experience with them. All the very best !!!

jdm3 profile image
jdm3 in reply towhatsinaname

Immunotherapy will not work for you? Is this due to a low mutational burden indicated by Foundation One or some other marker/result?

whatsinaname profile image
whatsinaname in reply tojdm3

Yes, the Foundation One report indicated a low TMB (tumor mutational burden).

jdm3 profile image
jdm3 in reply towhatsinaname

Thanks. Similar for me.

Have a nice weekend.

whatsinaname profile image
whatsinaname in reply tojdm3

Thank you, jdm3.

All the very best to you.

ronnie1943 profile image
ronnie1943 in reply towhatsinaname

HI,... My husband too...immunotherapy will not work for him. Not to good on all this new technology, how to get ahold of different people on the forum, so just saw your post and wanted to tell you my husband Sam qui lied for the PSMA trial, but got denied fir the lu-277 infusions. He will be put on Xtandi now to see how that works for him..after all the red take, up to date scans, etc. we are so disappointed, really bummed. Sam's oncologist was disappointed also.

Just wanted to touch base with you, how are you doing?

Sincere best wishes, Lynn. Pa

whatsinaname profile image
whatsinaname in reply toronnie1943

Thanks for the post, Lynn.

Very sorry to hear about your husband, Sam. Real bummer, not being allowed to do the Lu-177 trials. Lets hope Enzalutamide (Xtandi) works for him. All the very best.

I am not too good, but still enjoying life. I'll take it as it comes :-)

All the very best, Lynn to you and Sam. Keep in touch,

Carlos, Bombay, India.

ronnie1943 profile image
ronnie1943 in reply towhatsinaname

Hi Carlos, thank you for your reply. Sorry to hear you are not feeling well... are you doing the Lu-177 trial? I don't remember if you were on it for a time and went off it because it was not working for you?

Take care, all the very best for you too!!!

Prayers and well wishes for both you and your dear wife coming all the way from the US to India..

Keep in touch also...

Sincerely, Lynn

whatsinaname profile image
whatsinaname in reply toronnie1943

Hi Lynn,

1) I have completed 2 infusions of Lu-177 and they have been a dismal failure. My PSA has gone up from 16 before starting to 54 now. The tumors all over have increased both in size and qty. I have decided to discontinue Lu-177. I am shortly going to decide what to do next. Probably go to Germany for the combo therapy of Lu-177 and Ac225. Lets see.

2) I am not an American. I am an Indian living in Bombay. I have been to the US seven times in the last 12 years on vacation. Love the people and the country.

Thanks and all the very best to you, Lynn. Hope Sam gets better soon.

Carlos.

ronnie1943 profile image
ronnie1943 in reply towhatsinaname

Hi Carlos,

So sorry the Lu-177 did not work for you...I have read that men are going for the combination of both Lu-177 and Ac225, they say the Ac225 is more effective. This late stage PC cancer is challenging for sure... Sam not being on any treatment for the last couple months, getting scans, etc going through the red tape to qualify for the Lu-177, which he was denied. In the mean time his PSA has now risen from 89 to 500. We are going to the dr. This Thursday. We have applied for finicial help for the Xtandi.??

There are many more treatments and more in the horizon.

Sincere wishes for positive results on what ever treatment you decide... Sam said to say hello and never give up hope..... Keep the faith. 🙏🏻

Lynn

whatsinaname profile image
whatsinaname in reply toronnie1943

Hi Lynn,

So sorry to hear about Sam's predicament. From 89 to 500 ?? Boy, that's a huge hike. Ac-225 is more effective for sure but also very effective in completely ruining ones salivary glands. The xerostomia is a killer with Ac-225 alone. The combo treatment lowers the Ac-225 potency and makes it the most worthwhile of the radionuclide treatments, imho. I am checking out Germany. Lets see.

Say hello to Sam from me and tell him I am a dogged fighter but I also know when I am licked. Not just yet, of course. Two/three rounds to go and I am coming out of my corner strong and with some new strategies :-)

All the very best to you and Sam. Lets hope the tide changes for you guys.

Cheers, chin up, live life fully.

Carlos.

ronnie1943 profile image
ronnie1943 in reply towhatsinaname

Hi... Thank you again for all your kind words. I try hard to be positive, keep the hope and have faith. There are times it's hard though not to go back to that dark place... I talk to myself when this happens and start to pray.

Like you Carlos, Sam is a fighter and is strong. He's never complained with all he's been through. I do enough of that for both of us. Lol!!

Sam said hello also and never don't give up!!!

Keep in touch.

Sincere best wishes to you and your wife.

Lynn

Jbooml profile image
Jbooml in reply towhatsinaname

Hi Carlos...did you read George’s post about this cofactoring antagonist to this MED1 AR agonist....forget my gobbledygook and just go search it.....ADK1 kinase blocking drug University of Pit....and lets all hope this works

whatsinaname profile image
whatsinaname in reply toJbooml

I haven't as a matter of fact, Jeff. But, I will now look for it.

Thanks much. All the best.

Fuzzman77 profile image
Fuzzman77

Hi oldcars. That was me going to New Delhi. I just got back yesterday from there after deciding to have a prostatectomy. In retrospect I probably should have had the surgery after just 6 vaccines but to be honest was afraid to lose my prostate since that is where we were getting the tissue to make the vaccines. I was declared CANCER FREE on Monday. Will it last while know? Path from surgery showed seminal vesicles etc free of malignancy and PSMA PET done at the same imaging place when I started my journey there showed complete resolution of all mets. The exception being my sacrum where the old tumor can still be seen but is dead with no SUV. Here is the reason I think I should have just had the surgery after 6 vaccines. I have had 5 PSMA PET scans done there. SUV uptake on the initial PSMA PET was 28.3. After 6 vaccines it went to 14 so was hoping to avoid the knife. The next three PSMA PET scans the SUV uptake barely budged inside my prostate reading 12.7 three weeks ago. Everything was contained in the prostate so we are all very happy with the results. No matter what else was added in after the initial 6 vaccines barely budged the SUV. I had 29 more vaccines. Why, because nobody knows. I just knew it was keeping the monster under control. Adding Xtandi and then Keytruda after about 20 vaccines didn't make the SUV move much so all of doctors here and in Delhi recommended a prostatectomy after my last PSMA PET in January. I did have more vaccines made after surgery to last a year or so. Will stop Keytruda after a max of 6 more infusions(first was July 12, 2018) due to extreme side effects on my diabetes. Xtandi I will stop at the same time. I will continue with the vaccines until I run out as there are literally no side effects. A beautiful thing for me as I suffered about the worst someone could from Lupron and Firmagon. Had 15 months of ADT shots with last being Jaanuary, 2016 so this response is obviously not from that. I was on nothing else when I started the vaccines. There is indeed hope at the cellular level and I had a hunch they might help me after being cured with TVAX vaccines in 1996 for a 5.1 pound kidney cancer tumor that had metastasized to my pelvic bone and had 1/3 of my veins cava removed in my heart due to the tumor growing up into my heart. Then they gave me vaccines as soon as I was strong enough after surgery and I never looked back. Even APCEDEN, which is what the vaccines in Delhi are called promotes doing this early in the course of disease to increase response rates and to do it in combo with something else if at all possible. I am a very lucky man. Dendritic cell vaccines made out of my own tumor worked for me but as we all know they won't work for everyone. To have it contained after having 30 mets was a dream come true and now we will see how durable my response is. I have no pain anymore in my bones or anywhere and have been able to breathe normally again after having so many tumors pressing on my heart when I got there I literally had to stop and rest after walking a block. Thank God for APACBiotech I have my life back again. By the way, I am NOT the only one who has gone into remission with mPCA to the bones from the vaccines. The others had 12 max whereas I have had 35 now. Like I said in retrospect we all believe now I could have done this after 6 vaccines with the same results. Nobody knows for sure but they are doing some amazing things over there for various cancers.

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