Help please

[Amandaking]

Does anyone know if Lu 177 PSMA treatment in Germany is suitable for chemo therapy naive men? Zytiga failed after 28 months - sent to Royal Marsden screened for BRCA gene but not present. PSA 27 - 1 month of Xtandi and now PSA 43 awaiting on your superior knowledge - thank you

[Tall_Allen]

Contact Uwe Haberkorn: Email: [e-mail]

Phone: [phone]

[Amandaking in reply to Tall_Allen]

Thank you so much

[Daddysdaughter in reply to Tall_Allen]

Thank you Allen, for your wealth of information this is who we contacted for my father. I will keep you all posted on what happens!

[tango65]

I had the the Lu 177 treatment in 2016 at the Technical University of Munich. I never had chemotherapy, since 1 Lu 177 associated with ADT took care of the lymph nodes metastasis. Get in touch with Dr. R Tauber :

mriu.de/k_mit.html

[Amandaking in reply to tango65]

Thank you so much for sending me this information- I’m hoping that you are doing ok - thoughts are with you tango65 .

[cesanon]

Lu 177 basically is chemo.

Though don't expect a US insurance company to pay for it.

[Daddysdaughter in reply to cesanon]

Lu-177-6-7 trial is now being offered in the USA. My father will be going this Monday for evaluation. He also has failed treatment and his PSA was 20 in March and now up to 140 on Zytiga.😱we are looking forward and praying that he is able to receive this treatment.

[cesanon in reply to Daddysdaughter]

Dr. Almeida in Pheonix said he was doing an lu 177 trial.

Where is the lu 177 trial that you are talking about?

[Daddysdaughter in reply to cesanon]

The patient fulfills, in my opinion, the inclusion criteria for the Lu-PSMA Vision-trial (visionclinicaltrial.com) which is already recruiting in the U.S. (please see below) and there are constantly more centers being added. It is a good study because it is not tested against placebo but against another effective therapy, e.g. Zytiga (=abiraterone).

We may only accept patients who do not meet the inclusion criteria of the study.

[Daddysdaughter in reply to Daddysdaughter]

This is the information given from Germany

[cesanon in reply to Daddysdaughter]

Almeida said his trial was for the purpose of testing toxicity limits.

So presumably he is looking for seriously advanced or difficult cases.

Or perhaps patients who have reached the lu 177 cutoff for the number of treatments that they are allowed under their current treatment regime.

Don't forget to check out treatment in Australia. I understand lu 177 treatment there is much cheaper than in Germany and you don't need to qualify for a trial in order to get it.

[Daddysdaughter in reply to cesanon]

GU Research Network/ Urology Cancer Center

Recruiting

Omaha, Nebraska, United States, 68130

Contact: Tony Romero 402-690-3716 [e-mail]

Principal Investigator: Luke Nordquist, MD

United States, Texas

Excel Diagnostics & Nuclear Oncology Center

Recruiting

Houston, Texas, United States, 77042

Contact: Susan Cork 713-341-3202 [e-mail]

Principal Investigator: Ebrahim Delpassand, MD

[Flydoggy in reply to Daddysdaughter]

Good luck and please, keep us posted?

[MelaniePaul]

Hi there.

I suppose the best thing would be to ask one of the clinics in Germany about that. I was in touch with a professor Dr. Axel Rominger from University Hospital Munich last year to find out if Paul would be a candidate for this treatment, and he sent us a long form to fill in about medical history, treatments received, CT and bone scan results and so forth.

Generally speaking, I think that this treatment is only suitable for those with bone mets.

Best wishes and good luck

Mel.

[ronnie1943 in reply to MelaniePaul]

Hi Mel......Was your husband able to the have the Lu 177?

My husband Sam is now on a targated therapy drug, "Cometriq" it's not finished all stages of the clinicial trial.his oncologist had to reduce his dosage because Sam was not able to tolerate the side effects. She does not know if the dosage is going to work at this dosage because of the drug being so new they have yet any data on reducing the dosage . We are going to see her

August eight to see what his PSA is after reducing the dosage. There is a chemo she could put him on but she said it would not give him the time that this drug will???

I'm so scared and worried of what comes next????

Thank you for any help

Best wishes to you and prayers. 🙏🏻

Lynn.Pa.

[MelaniePaul in reply to ronnie1943]

I cdompletely understand how scary this situation must be for you right now. There is a lot of uncertainty with these new drugs. I suppose you can only wait and see what the PSA shows in August.

My husband was not on LU177. He would have done it, if he hadn't developed the liver metastases which, according to his oncologist, really needed intervention fast and the only option was Chemo. The doctors in Munich and Heidelberg told us that with liver mets it wouldn't work.

Mel.

[ronnie1943 in reply to MelaniePaul]

Thank you for your teply. I am anxious to see what the PSA is this next visit. Like I said the trial has not been going on long enough to see what the outcome is when taking a lower dosage.

Thanks again for replying, only all of us on this journey know what we go through.

Best wishes to you and your husband.

Lynn

[Amandaking in reply to MelaniePaul]

Thanks for the info MelaniePaul. My husband does have bone mets. I can’t gauge from the website how many treatments are needed and how far apart they are - if anybody knows that would be really helpful. Thanks

[ARIES29 in reply to Amandaking]

The treatments of Lu 177 here are 6 weeks apart & usually 3 treatments but that would depend on the degree of cancer.

[Amandaking in reply to ARIES29]

Thank you ARIES29 - from yout bio you have been on a roller coaster and with a young daughter I’m glad you are such a great fighter. I have also looked at Lu-177 treatment in Perth au which looks like a great place to visit so may be 4/5 months in Oz would be better than Germany. No point in having 30k in the bank with no one to share it with!

[ARIES29 in reply to Amandaking]

Hello Amandaking, yes without my 5 year old daughter i dont think i would be here. I realize life is what you make it but when this happens & they give you these drugs to prolong it all you need a good reason to keep on keeping on.

On another note, Dr Lenzo does the LU-177 treatment in Sydney in one day & if you want to see the best city in the world then that is it but it is also the third most expensive.

[tango65 in reply to ARIES29]

At the Technical University Munich the treatments are every 6 weeks up to a maximum of 6 treatments or less depending on the effect of the therapy on the kidneys.

[ARIES29 in reply to tango65]

Tango 65, yes & i guess the amount of treatments would depend on how much work needs to be done.The Ga 68 psma pet scan shows everything & they determine from there how many treatments.The kidneys & liver certainly take a bashing with all this crap they put in us but life is what it is.

[tango65 in reply to ARIES29]

The treatment I received in Munich did not cause any problem with the renal or hepatic functions.

They monitor the function and the radiation doses that the kidneys (liver etc) receive and stop treatments when needed to avoid damage.

They told me that they could go to 6 treatments (if needed) without causing kidney damage.

We should not forget that Lu 177 is widely used abroad to treat somatostatin positive endocrine tumors and nuclear medicine doctors have experience with these compounds. Lu 177 has been approved by the FDA to treat these tumors.

fda.gov/drugs/informationon...

[Tall_Allen in reply to tango65]

You are confusing two DIFFERENT radiopharmaceuticals. Lu-177-DOTATATE (Lutathera) is what was FDA-approved for neuroendocrine cancers of the digestive tract. Lu-177-PSMA-617 is being used experimentally for prostate cancer. Lu-177 is just a beta-emitter that destroys cells that it attaches to - the ligand dictates what it attaches to.

[MelaniePaul in reply to Amandaking]

I think they don't really say how many treatments are needed. It depends on how many tumors there are and on the patient's response to the treatment. That's what we were told at the time. It could have taken one cycle or four cycles. I don't think they were offering more than four.

Mel.

[Grumpyswife in reply to MelaniePaul]

Hi Mel, Are you sure about the bone Mets being preferred?

I believe Raul who used to post often had soft tissue, lymph nodes and was cured after one treatment in Germany. I wish he would show up again on here.

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

NOTE: BELOW IS A POST FROM "RAUL" 5 MONTHS AGO (Feb. 2018?) ADDRESSED TO

"Cmdrdata" THAT I BACKTRACKED FOR THE GROUP. (btw RAUL'S ID was hidden).

Hey Data:

Here is a link to the initial scientific articles I read before going to the TUM in Munich in 2016. I promise I will update the information until 2018 soon.

There is a lot of basic and clinical research behind these techniques. These studies has been going on for more than 1o years in Europe, Asia, Africa and Australia. We just are starting, and probably more than 10 years behind.

This is my personal Google drive, so is safe:

drive.google.com/file/d/1HG...

Gallium 68 PSMA Pet /CT studies and Lutetium 177 PSMA treatment for cancers PSMA positive are going to revolutionize the diagnosis and treatment of PC.

Suppose your doctor thinks you have PC. GA 68 PSMA study will give you the diagnosis, location and if it is confined or already has expanded. outside the prostate.

The limitation is that there are cancers which are PSMA negative. If the study is negative a multiparametric MRI can be done and the information about the cancer in the prostate can be obtained. Biopsies can be done to confirm diagnosis and grade the disease.

Let's assume again the GA 68 PSMA test is positive, The cancer is in the prostate and there a few nodes in the pelvis. No surgery in this situation, IMRT exactly planned to the lymph nodes and the prostate can be done. So many errors and atrocities of the actual treatment could be avoided.

GA 68 PSMA is positive and there distant metastasis , so you are possible candidate for Lutetium 177 PSMA treatment. May be it will be only this treatment , may be it will be better to associate it with ADT usin lupron or similiar and abiraterone.

Nobody knows at this time , but this is the future. Ga 68 PSMA, multiparametric MRI, Lu 177 PSMA treatment.

The present is that if after a positive Ga 68 PSMA if you have metastasis you are a candidate for Lutetium 177 treatment. They offer up to 6 treatments and most of the metastasis can be improved in many patients. Until more information is obtained this treatment may be combined with ADT, abiraterone, chemo etc.

If you think about you may start realizing why we are so much behind in this subject. If this work, and it is working at least in 7 countries, will have less prostatectomies, may be less lupron or similar, less abiraterone, less enzalutamide, less chemo, less radiation, and no radium 233 treatment.

For me it was a paradigm changer. In 1 month, with only one treatment I went from metastatic disease to non metastatic disease.

The treatment is an IV infusion during 1 hour. No side effects except in patients with large amount of bone metastasis. In these patients the beta radiation from the Lutetium 177 may affect the bone marrow, but I believe it is less than any chemo.

I will post more articles. I know the Germans at Heidelberg have a new ligand that is metabolized in the liver and it is not eliminated by the kidneys, so the diagnosis with the Ga 68 will be even more precise. If they use the same ligand with Lu 177, I think it will be possible to do more than 6 treatments.

The centers in Germany are in Munich (Technical University, Ludwig Maximilian University), in Heildelberg (pioneer place), in Bonn and in Bad Berka. Look at the articles in the link.

A Google search will give you more information about the centers in these places. I f you need more help I have contacts for each one of them.

Anything, please let me know

Raul

Good Luck and Good Health.

j-o-h-n Saturday 07/21/2018 7:23 PM EDT

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

Thanks John, Do you recall Raul’s Pca history? I believe he had lung or chest Mets and only needed one treatment to be possibly cured which was/is amazing. It seems he no longer posts here so may have moved on with his life.

After hearing of his results I believe I spoke with Susan Cork in Texas about their trial. She explained that you paid $4500 or so for the scan and 10K for each treatment and perhaps would need three treatments which was so discouraging. Things have improved. Maybe it won’t take the US 10 years to catch up.

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

NOTE: BELOW IS A POST FROM "RAUL" 5 MONTHS AGO (Feb. 2018?) ADDRESSED TO

"paulofaus" THAT I BACKTRACKED FOR THE GROUP. (btw RAUL'S ID was hidden).

He mentions this below: "My treatment was in 2016. I had a multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone".

Hopefully this will help you!

j-o-h-n

Hey Paul,

Sorry to hear about the progression of you cancer.

If the cancer is PSMA positive it can be treated with Lu 177 PSMA which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease. There is a pretty good experience in Australia with this treatment. Many people from abroad go to Australia for this treatment.

There are at least 3 clinical trials going on for castration resistant metastatic prostate cancer in the USA.

Please search for Prostate cancer and Lutetium 177 at clinicaltrials.gov

The first things is to determine if the metastasis are PSMA positive.

A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA got Ga 68 PSMA PET/CT:

Please do a search for prostate cancer and Gallium 68 PSMA at clinicaltrials.gov

My treatment was in 2016. I had a multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.

The treatment can kills cancer cells castration resistant and hormone sensitive in the bones or in soft tissues. Very well scientifically documented treatment.

Anything please let me know and I can provide more information.

Best wishes

Raul

Good Luck and Good Health.

j-o-h-n Sunday 07/22/2018 5:46 PM EDT

[Tall_Allen in reply to Grumpyswife]

I doubt he was cured. Lu-177-PSMA-617 attaches to any mets.

[Grumpyswife in reply to Tall_Allen]

I edited to possibly cured for Raul. After rereading Tango65 posts, he is still on ADT but has no new mets and negligible PSA after one treatment. Excellent IMO.

[Daddysdaughter in reply to MelaniePaul]

I did exactly that (university of Heidelberg) and now that they have a trial here in the US, they will not offer treatment unless you do not qualify for trial here... this must have something to do with the fact that it’s a phase 3 trial and they might not want to take from US recruiting pool. The positive is that if my father qualifies and is able to receive the treatment he will have everything paid by Endocyte pharmaceutical.

[Amandaking in reply to Daddysdaughter]

Wow amazing I wish you all luck please post your updates. We are in the UK and only trial I can find is for men that have already received standard chemo (doxy) We were hoping Lu treatment may put the standard chemo off for as long as possible- thanks and good luck

[cesanon in reply to MelaniePaul]

"Generally speaking, I think that this treatment is only suitable for those with bone mets."

And it is not so good for people with weak kidneys.

[tango65 in reply to MelaniePaul]

It works well in lymph node metastasis at least in my situation.

[Amandaking in reply to tango65]

Tango65 have you had this treatment? Would it be bold to ask you to describe it please? Many thanks and good wishes

[tango65 in reply to Amandaking]

The treatment is an IV infusion which last about 1 hour and it is given usually in the morning or around noon of the admission day.

Then you spent the whole afternoon applying cold packs to the lachrymal and salivary glands to reduce the radiation uptake. They make you drink a lot of liquid since the Lu 177 is eliminated by the kidneys.

One has to remain in the room for 3 nights because of the radioactivity. Nobody can visit you. The morning of the discharge day they do a whole body scan and a SPECT scan to determine where the Lu 177 is located.

I was admitted on a Friday morning and discharged the following Monday before noon.

I did not have any side effect except for fatigue immediately after the infusion. The fatigue lasted 6-8 hours. The most difficult thing for me was to be "in prison" because of the radiation and the German regulation that a patient receiving isotopes has to be isolated for 72 hours.

The cost (Technical University of Munich) is about 8-10 thousand euros, if one needs a Ga 68 PSMA PET/CT the cost could be around 12 thousand euros.

The first treatment associated with ADT took care of the lymph node metastasis.

Since my PSA was 0.8 (down from 10) when I arrived to Munich, they decided to do a Ga 68 PSMA PET/CT before given me the Lu 177. The metastasis where present and they decided to proceed with the treatment. After the treatment my SPECT was negative in the sites of the metastasis.

I had to have another GA 68 PSMA PET/CT (it was done at UCLA) 5 weeks later to see what was going on. This GA 68 PSMA PET/CT was negative for metastasis.

The cancer was still present since my PSA was 0.4 but since no metastasis were visualized, they canceled the second Lu 177 treatment.

I continue in ADT and my PSA was 0.05 last month. It has been 21 months since I had the Lu 177 treatment.

[Grumpyswife in reply to tango65]

Tango65 that is wonderful for you. Thanks for that great summary.

I see the Endocyte trial requires previous chemo treatment which would disqualify my husband for their trial.

[tango65 in reply to Grumpyswife]

There are other clinical trials.

clinicaltrials.gov/ct2/resu...

If it is economical feasible one can go to Germany or to Australia. The people in Munich are more opened to consider patients from abroad than in Heidelberg. I was not accepted in Heidelberg, but I was accepted in the Technical University in Munich and the Ludwig Maximilian University in Munich.

[Grumpyswife in reply to tango65]

The money is an issue for us as husband also has cognitive issues with no long term care insurance. He was turned down for LTC insurance after pCa diagnosis 18 years ago. I was able to get it though. So our plan became for me (younger) to take care of him.

[Daddysdaughter in reply to tango65]

Interesting neither was my father. we really did not want to go into a trial.

But now we are here in Omaha getting evaluated to see if he will qualify. Even if he qualifies it still is randomized against BEST standard of care. I really don’t understand that, my father is currently on best standard of care and failing with a very aggressive cancer! We will just see what happens. I will post all the info I receive.

[ARIES29 in reply to tango65]

Here in Australia it is a day treatment i was told,in & out the same day & tell everybody to sit in the back seat of the car on the way home & keep away for 24 hrs.

[tango65 in reply to ARIES29]

In Germany anybody receiving radioactive isotopes have to be isolated for 3 days.

I was allowed to get out of my room 24 hours after the treatment but they kept me in the ward for 3 days.

[ARIES29 in reply to tango65]

I think that is a better treatment to be on the safe side,but i will not go To Munich at the moment anyway

[Grumpyswife in reply to ARIES29]

Years ago we traveled extensively and enjoyed it. It seems a lot more difficult now.