My husband and I have been following this site for almost a year now. We are so impressed by all of you and your posts, and your dedication to helping others through this horrific battle with metastatic castration resistant prostate cancer. The first thing I do in the morning when I wake up is to check this site for more information, questions asked, and of course the humor that has me laughing before I even get out of bed. My husband was diagnosed in May of 2017 (two years ago) and he has done Zytiga, Chemo (Docetaxel), different rounds of radiation and he was only 2 months out of Chemo when his PSA began to rise again substantially. He did do some genetic testing but does not have any of the known mutations such as BRCA. He was signed up to start the ProStar clinical trial but just a week ago found out that he is not eligible since he had Zytiga first and then Chemo. So, we are in Denver, Colorado and we know of another clinical trial at Anschutz (University of Colorado) Phase III that is testing LU-177 (Vision Trial). Is the LU-177 only for nueroendecrine cancers or are they testing its use for endocarcinoma cancers as well? We have an appointment set up for July 2nd to see if he qualifies and then if he does they send him to Houston or Scottsdale for a PMSA test. We are wondering if any of this is worth pursuing if it is only for nueroendecrine? Any knowledge on this subject is greatly appreciated!
Diane
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MeliaQuinn
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It's the opposite. The VISION trial is only for adenocarcinoma and not for neuroendocrine. The reason that they need to see if his tumors are positive for PSMA is because the Lu-177-PSMA-617 only attacks PSMA+ adenocarcinoma and does not attack neuroendocrine, which is PSMA-
In addition to the information posted in the clinicaltrials.gov web page for the trial, there is also contact information. There are phone numbers and email addresses you can use to get info directly from trial personnel. In this case, it looks like the trial is being funded and supervised by Endocyte, a drug company owned by Novartis. The contact info is for Endocyte personnel - which should have extensive information about the trial. I expect that they can also give you contact info at the University of Colorado for information about the University's facilities and plans.
I think that, most of the time, when you call or email you will be referred to an oncology nurse (probably even if a doctor's name is given) but he or she should have a lot of knowledge about the trial and be able to answer questions or find answers for you.
Thank you Alan - We did make contact with the clinical coordinator but I really didn't understand the PSMA positive/negative protein on tumor cells and the nueroendocrine tumors. I think I am beginning to grasp it now. There is nothing like a crash course in metastatic castrate resistant prostate cancer!
I sometimes think that cancer biology make rocket science look easy. Here's a very short video that describes the treatment in a way that, I think, makes it understandable to the layperson: endocyte.com/pipeline/advan...
The concept is that PSMA is a protein molecule that sits on the surface (the "membrane") of many prostate cancer tumor cells, and not on other kinds of cells. That molecule is like a lock (it acts as an "antigen") with a particular shape that only one key can fit into, and that key doesn't fit into any other locks, just PSMA. The key in this case is the blue oblong in the video. It's a molecule that exactly fits into the PSMA lock. On the back of that molecule is a radioactive atom (a "radionuclide"). The injected solution of keys with radioactive atoms circulates around in the bloodstream, with most of the keys attaching themselves to tumor cells by binding with the PSMA molecules on the cells' surfaces. Then the radioactive atoms of lutetium give off high energy beta rays (electrons), that damage or kill the nearby cells - which are mostly prostate tumors.
Thank you for both the explanation and the video link. I have heard that the LU-177 treatment is available in Australia and Germany. I will need to read more to see what the overall survival rate is using this treatment. So wonderful to have "people in the know" to communicate with. Hope you are doing well.
Hi Alan. So for someone like me that is only showing PSMA avid in the prostate have you heard of other guys trying Lu177? 13 was my last PSMA avid score in January, but it was only showing up in the prostate, not in the bones or lymph nodes although I imagaine there's still some there.
I'm afraid I don't know anything about PSMA avid scores. Do you happen to know a web page that explains them? Could you be thinking of PSA (not PSMA) = 13? PSA = 13 is consistent with localized cancer, i.e., not yet metastatic.
As a pure layman, I would think that prostate tumor cells outside the prostate are likely to be similar to prostate tumor cells inside the prostate, which is where the tumors got started. If so that might mean that you either don't have any metastases, or they're still very small.
I don't know what treatments you've already had, however If the cancer is confined to the prostate I would think that surgery or radiation is your best bet for a cure.
Thanks Alan. 13 was the PSMA avid which signifies intensity of the tumor. PSMA means prostate specific membrane antigen that is only found on the membrane of prostate cancer cells. I had mets all over including in the bones up to my cheekbone. I most likely will have surgery soon barring some crazy miracle. The oncos restaged me from stage 4 so they will now do surgery. I just want to do whatever I can to keep it from pouncing for as long as possible is all. Have slowly but surely continued to get better over the last two years with a combo regime of APCEDEN vaccines, Xtandi, Keytruda, Xgeva, and metformin, but not always taken at the same time. I have tried all standard treatments but no go although Xtandi works as long as it in conjunction with the vaccines, and vice versa. It's taking the combo to keeps it a bay, at least for me. Dx'd 8/14, PSA 212, Gleason 9 with tumors up and into the lymph nodes in my neck. Been lucky.
If you have a SUV of 13 in the prostate is an indication of the presence of PC. To my knowledege Lu 177 PSMA treatment is used for treatment of metastatic cancer and not for treatment of localized cancer. It is known that Ga 68 PSMA studies could miss low Gleason score cancer in the prostate. The implication is that treatment of localized cancer in the prostate with Lu 177 PSMA has the potential of missing or not treating all the cancer in the prostate. If you are oligo metastastic treatment of the prostate with radiation may offer a survival advantage according to the Stampede trial.
I had Lu 177 PSMA treatment in Munich in 2016. One treatment took care of lymph node metastases in the pelvis and abdomen. I am still metastases free according to the last Ga 68 PSMA study done last January.
The negative side effects are few and transient. I has some fatigue lasting one day. Some people may have hematological problems (low platelets) if they have a lot of bone metastases, The treatment is completely painless.
The efficacy is related to the PSMA expression of the cancer and how advanced is the disease. Most patients have some response to the treatment. They do not treat neuroendocrine PC patients, because neuroendocrine PC has a very poor expression of PSMA.
This is a study showing the efficacy of Lu 177 PSMA treatment:
Hi Tango65, may i know what has been your protocol after the successful Lu177 PSMA treatment in 2016? Also, how many shots of Lu177 did you have? Thank you and happy to know it worked well in your case.
I had only one. All the metastases in the pelvis and abdomen were gone after the first treatment. I started ADT plus casodex in August 2016 when multiple lymph node metastases were diagnosed in the pelvis and abdomen. I decided to go to Munich in October 2016. I got the 1st treatment the last week of October 2016. After the treatment the doctors in Munich did a SPECT study and they could not find Lu 177 PSMA activity in the metastases. They asked me to wait 6 weeks and have a Ga 68 PSMA PET/CT done. I had one done at UCLA in December 2016 and the lymph nodes were negative for PSMA (cancer). The doctors in Munich canceled the second treatment. I stopped Casodex in December 2016 and continue in ADT. My PSA is 0.4 and there are not mets according to the last Ga 68 PSMA PET/CT done last January.
Yes. If PSA starts to increase will add casodex. When this fails, and PSA is around 1 will repeat the Ga 68 PSMA. If there are few metastases, we will treat them with SBRT. If there are many, with Lu 177 PSMA in Germany or Australia. I know this is a very controversial plan. One must remember that the direct treatment of metastases or the treatment with Lu 177 PSMA wil be done in a very early stage of metastatic PC, since the regular CT scans and the regular Bone scans will not detect anything with a PSA of 1.
I consulted with 2 other oncologists and they agree with this plan. Dr Moriis at the Memorial Sloan Kettering cancer Center thinks it is a good plan of treatment and that if it works I could delay 2 or more years the use of enza or abiraterone or chemo. The idea is to delay as much as possible the use of the new anti androgens and chemo, the main lines of treatment of stage 4 PC.
As a Lulu grad and extremely well versed in the do's and don'ts....did anyone express an interest in a cohort trial of L-Psma combined with L-dotatate...to combinationally treat the NE variants as well.
If you are in a position to pay for treatment, I just returned from Homburg Germany where I received PMSA lutetium/actinium therapy for metastatic Prostate cancer. It is not a cure but he has great success with remission, and is the new standard of care for ADT resistant prostate cancer in Germany. Dr Ezziddin is one of the pioneers, and one of the two to use tandem therapy that I know of, the clinic is excellent, the staff competent. The mostly speak English.
Dr. Ezziddin is also an expert in radionuclide therapy for neuroendocrine tumors
Thanks for the info, link and contact info. What was your experience in terms of number of treatments combining both LU-177 and Actinium? Were you there for awhile? Side effects? Results? And, what was the cost? So many questions-sorry, but would like to know more. Thanks for posting!
Hi, just read this. I have gone to the University of Heidelberg three times in 2019. Had LU-177 and AC-225. Psa is now ONE. Going back March 14. How are your results doing.
Hi, Just now read your post. I have been to the university of Heidelberg three times in 2019. Did LU-177 and AC-225 Psa is now ONE. Going again March 14. So far how are things going for you.Thanks
Hi lewicki, congratulation for this amazing result! What is the cost for one treatment in Heidelberg? Why do you need now another Lu177/Ac225 as your PSA is very low?
Everyone will be different on the cost and amount of treatments necessary.
Fee range from 7k Uros to 12k . They will give you estimate depending on your condition. Some only need one treatment. I need to go back because the doctors want to see more cancer in the lymph node destroyed.
It is not to bad an experience. side effects are slight. I do have dry mouth . the procedure effects the saliva glands that may go away. It has become better.
Thank you for your reply! My husband had three treatments in 2019 with Lu177 in Vienna, Austria and it was very expensive :14000 € each. So if he needs another one we have seen that maybe it would be less expensive in Germany.
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