I’ve visited the Mayo today to meet with my OC Dr. Kwon to review my choline PET scan and PSA results prior to receiving my third LU 177 PSMA shot tomorrow. My results are quite astounding with my PSA being reduced from 110 to 1.0 in 12 weeks and my PET scan showing no new Metatasis and clearing and shrinking of my existing lesions.
I know this treatment does not give everyone these results but hopefully researchers can use these results to improve their understanding on why some cancers respond better to this treatment vs others.
I will receive my next injection tomorrow will continue to post as I receive new results.
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Jackpine
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WOW. That's the kind of results we all dream of..... I remember getting 25% reductions per treatment for a long time a year ago. Then leveled out and never got to where I wanted to be, But current PSA of 0.129 and steady ain't bad.
My PET scan in this case was not part of the study but part of my normal monitoring. The study uses bone and CT scans with contrast. My next scans for the study are late January.
Some members on this site traveled to Houston to get the 68Ga-PSMA-11 PET/CT scan. I don't understand how else they would know if the cancer is PSMA avid. C-11 Choline is markedly inferior.
I did travel to Houston for the PET PSMA test prior to being enrolled in the study per study protocol. This is done to insure you are producing sufficient PMSA for the drug to be successful.
As I stated I’m my post and earlier response my Choline PET is part of my ongoing monitoring by my OC and is not part of the study. The study uses bone and CT scans with contrast to monitor progress.
Wow, fantastic results! I hope that this is a durable response. I am hoping to get some lutetium soon, it would be wonderful to get such a great result.
I have some contacts at Mayo Rochester. They sent me this link. Sounds like your might qualify. They are extremely efficient and respond to those who need treatment quickly. You might give them a call.
My Lu177 costs aud $9,600 for each inject. I am in Australia , and afaik, there's only one provider, Theranostics Australia. Also, I don;t know if insurance covers cost, but I do know there is no rebate from our Medicare, so its just all right out of my pocket.
We just heard back from our University of Pretoria here in South AFrica. They quoted LU-177 at R 50 000 per shot. That would be about AUD 5000. They also do another treatment which is much cheaper and is specialised for bone mets. We are meeting with them in January. Also had a response from Mayo Clinic in USA but I think it may be too expensive for us because of the exchange rate.
Our department offers 2 types of treatment for castration resistant prostate cancer - Lutetium 177-PSMA and Actinium 225-PSMA. I thought I will give you a bit of information before you meet with Prof Sathekge.
Lutetium 177-PSMA
Lu177-PSMA is a Beta emitter and indicated in local recurrence and nodal involvement.
A patient might experience a dry mouth during treatment, but it will get better after treatment.
Patients receive 4 - 6 cycles in 6 week intervals.
Cost: R 60 000 per cycle, some medical aids do fund the treatment.
Actinium 225-PSMA
Ac225-PSMA ia an alpha emitter and indicated in wide spread bone metastases.
Unfortunately the alpha emitter causes destruction of the salivary glands and therefore a patient will have a dry mouth. Our patients that completed the treatment always have water close by and some use a saliva replacement gel available at pharmacies.
Patients receive a maximum of 6 cycles in 8 week intervals.
Cost: R 5 000 per cycle and +/- R 1500 for a Ga68-PET/CT scan before each cycle.
I am sure Prof is going to recommend Ac225-PSMA treatment. Our next Ac225-PSMA treatment is scheduled for 21 - 23 January 2019.
I hope the information helps a little bit until you meet with Prof.
Thanks for that info, so the Ac225 is the better one than Lu177.
Doc here said I might do OK with Lu177 which takes slightly longer to work than Ac225 and Lu177 may have less side effects of dry mouth and dry eyes. A friend here has had a dry mouth from IMRT for a neck cancer some 10 years ago but he manages OK at 78.
I had a chance to be blind trial of either Cabazitaxel or Lu177, but I had no faith in more chemo, and I might have been assigned to cabazitaxel so I said no to trials and opted to BUY the Lu177 elsewhere to make sure I got it.
Your scan and Psa results are very good indeed after only 2 Lu177 injects.
My Psa 3 days before first Lu177 was 25, and 5 weeks later Psa was 25, so I don't know if it had continued down below 25, then up to 25 again.
I have my second Lu177 on 4th January 2019, and maybe have to wait at least another 6 weeks before scans show what is going on or not going on.
My Psa before Lu177 ws affected by 5 chemo shots, with last one at 1 month before first Lu177. Psa at 5th chem0 was 45max, nearly four times the Psa of 12 before chemo, so onco docs concluded chemo was not doing much for me, and referred me to doc for Lu177.
But the mean time for extension of life due to Lu177 is about 14 months, and that means some men get 3 months and some might get 3 years. So Lu177 is a gamble. My Pca is PsMa avid, which indicates it should work well. And my Psa was relatively low, under 25 at first Lu177, and I had no bone pains and basically had no disease symptoms, so the total amount of cancer is not very high and maybe that means there is less for Lu177 to do, or more likely to kill the small amount of cancer than a large amount over time. But no matter how I think about it all, just exactly what happens is not able to be forecast by any doctor.
Tall Allen asked why choline 2 instead of Ga68 scans. From what little I know, maybe choline scan gives better Big Picture. It is known that your Pca is PsMa avid, and it must be for Lu177 to work, so maybe another PsMa scan is not needed and maybe Choline scan is cheaper..... I am no expert......
Hello Jackpine, I just had second LU-177 to day so hoping for 0.1 PSA. Three months ago was 20 & now !.9 after just one shot. Expensive but it works for me anyway.
Always nice to hear good results. I responded well to chemo but results didn’t last and nothing else has worked. Hoping to have some lasting results with LU177
Ldb01, side effects for me were almost non existent. After the first one there was fatigue for three weeks & the latest one only two days ago slight pain in left side but could be from anything? The Galium 68 scan in a months time will tell all.
I can only imagine how exatic she was, no better present than this! And no he was supposed to start yesterday and had to have tests when he arrived. His platelets drop dramatically in a week and today we found out he is severely dehydrated. Just more bad news he’s on his way to the hospital for the next few days. Hoping a drip helps and maybe they can help with his food intake. There is still a possibility he can get into the trial but currently things are not looking good and I am just hoping that he is home for Christmas and that maybe we get a miracle. But I am so happy for you and your family, your response is what we want to see from this treatment. I like you think it will be an amazing option for many men. Happy Holidays to you and your wife!
For the trial I believe you need to have gone through chemo. Since this is a phase three trial it may take several years to be approved. There are options in Germany and Australia where LU177 is approved for treatment.
You could could try Mayo in Scottsdale. They are just about up and running. The trial criteria allows you in with any accepted standard care so not having chemo is not an issue
This is great news! I wish you continued success.
Is this a trial? My dad and I met with Dr Nordquist in Omaha, but what concerns me he is not guaranteed the LU-177. Its randomized and there’s a chance he would get the Zytiga-xtandi arm and he’s already failed both. I need to get him to a place where he will be guaranteed the LU-177. We will pay for it. Can anyone give us info on where that is available in the states?
Give the trial a chance to be randomized. We knew within a week that my husband was PSMA positive and he was selected for the trial. To my knowledge, it is only available in the states through a trial. Dr. Kwon wanted my husband to get this trial at Mayo, but at that time it was full and then they gave us Dr. Nordquist contact info.
Hopeseeker...here is the info on the trial where chemo is not prerequisite and you pay for the LU-177 out of pocket. clinicaltrials.gov/ct2/show...
Notice that it says the the trial is not recruiting and the contact info is no longer listed. This is news to me, so I would call either UCLA or Excel Diagnostics and see what is going on with the trial. I copied the info for you from an old listing. BTW, my husband had 2 injections at UCLA but he had no reduction in PSA so we were advised to stop.
LU 177 is not and approved treatment in the US but there are locations in Germany and Australia where LU177 is available. I do not have the contacts but I know other on this site do.
Lu177 is not approved in Australia either & there are no trials here yet so it is a cost of $9600aud with the Galium scan costing $500 in places. Theranostics here will give you all advice but in my case i was not castrate resistent but had involvment with lymph nodes.
I hope others will answer doing LU177. I am trying to get into the UCLA trial but just finished sending down my medical records and waiting. Is there a cost for the first "Special" type of scan which is not yet approved yet by FDA or insurance? If I have to pay, has anybody found a foundation to help pay for that scan.
Thanks. I called the coordinator and she assured me I would not be charged for the first scan. Perhaps that is with the disclaimer that I qualify for the trial after the scan results come back. I talked to another person at UCLA and your scan quote is correct, if I get charged. I still think it is a good gamble based on forum comments on LU177. Better than $80,000 trying to fly to Germany.
Great note. We all need to keep our laughter as part of our daily living. While this is a horrible disease I do like to keep positive and laugh. Have a great weekend and Christmas.
Very happy to read that you are responding to this treatment.
May I ask you what was your Gleason Score ? Which body parts were affected by Metastasis? Is there any metastatic lesions to the inside of your urinary bladder causing any blockage to the ureters ?
My Gleason was 4+3 = 7. During surgery the found seminal vestical involvement. Did radiation, chemo, Lupron and Zytiga. Had bone Mets from head ( ie skull) to my feet. I’ve not had and soft tissue involvement.
i talkeed to another pc person here who went with the lu-177. 9,000 out of pocket. first i can only acquire treatments that are for me free. i have no income to afford those expensive treatments. true my PROVENGE 72,000 medicare covers it and my supplement coverage but around this area we don't get the more exotic treatments. so i have to dealt with what is available for me in the pacific nw area of america.
I appreciate your sharing why your options are limited. While I live 3 hours from the Mayo I understand you are even more remote. Explore clinical trials near you. The treatment is generally covered by the drug company. Also look at drug company support or state programs. If you can identify treatment centers near you and can see what trials they are doing.
I believe you can receive the scan in Houston also in Germany and Australia. I’m part of a drug trial so it’s not approved for use in the USA presently. I know others on the site have gone to Heidelberg or Perth for treatment.
Thanks. I tried getting on it but they are not taking any more test patients. Looks like they have fulfilled their quotas. I know MD Anderson was involved initially but didn’t get into the Vision trial. Hoping they fast track this!
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