This is my first post. First of all, bless all of you warriors out there. My husband has been fighting pc for 22 years. Staged 4 at the time, no prostate removed, just meds, chemos, immunotherapies all of this time. He has been the poster child of experimental therapies. We are blessed to have him with us. It has been a long, very difficult journey. We just received back results of the PSMA scan. Wow. We are devastated. Just had a bone scan at a nationally recognized hospital that didn't pick any of it up, probably because it is too small. We are just digesting the new information. At this time, his doctors are looking for trials for 177Lu. The scan showed a fair amount of places where the cancer is present. I am doing my due diligence in research and found your amazing site. What do you think about the 177Lu. There are no open trials on the west coast as I write this. Anything else I should be looking into?
Need your suggestions, please - Advanced Prostate...
Need your suggestions, please
Try Germany, India, Australia or South Africa. Good idea to get an FDG scan as well to check for heterogeneity, especially with cancer that has mutated for so many years. There are a couple of trials in the US at UCSF (Rahul Aggarwal) or Weill Cornell (Scott Tagawa).
Thank you so much. We are looking into those.
Great ideas. What is an FDG scan?
FluoroDeoxyGlucose - it is the PET scan most often used for most kinds of cancer. Most cancers preferentially metabolize glucose to create the energy (via glycolysis) for their rapid multiplication. In general, fats rather than glucose are the preferred energy source for prostate cancer. However, even prostate cancer eventually shifts to a reliance on glucose. Also, prostate cancer cells change from high levels of expression of PSMA to lower levels. So, in your Dad, who has had metastases now for 22 years, it is possible that many of his PC cells are no longer expressing PSMA and have possibly shifted their metabolism to glucose. That is important to know because if he uses Lu-177 to eliminate only the PSMA-avid cancer cells, and there is a significant population of non-PSMA avid cancer cells, he may give them more room to grow and feed (called "repopulation"), and actually make matters worse. This is usually not the case, but since FDG scans are covered by Medicare/insurance, it's a good idea to get both scans.
Fascinating !
This is all amazing to me. Thank you so much.
Ta, what about pairing a pmsa scan with an auximin scan?
PSMA shows everything Axumin shows, and more. FDG usually shows less, but may show different.
I thought Auximin works where there is no prostate-specific membrane antigen? Alibi not with the same high resolution of a psma scan.
Was my understanding wrong?
The PSMA scans pick up the same mets as Axumin, but more of them. It doesn't seem to pick up the other kind of mets.
Would the 18F-DCFPyL PSMA PET/CT scan , ncbi.nlm.nih.gov/pubmed/309..., provide better clarity of all possible locations?
There are often lesions of the tumor which do not express PSMA, these are called PSMA negative. A PSMA scan, no matter what tracer is used, will not show these. An FDG PET scan can show these, however. It is not as sensitive as a PSMA scan, but if the lesions have certain size, it will detect these.
It's the best PSMA scan so far, but it's still only a PSMA scan.
These are the trials for Lu 177 PSMA in the USA that are recruiting patients:
clinicaltrials.gov/ct2/resu...
You should talk with the people running the trial at UCSF:
University of California, San FranciscoRecruiting
San Francisco, California, United States, 9410794143
Contact: Phu Lam 415-353-8337 Phu.Lam@ucsf.edu
I am assuming he has had the ADT drugs, casodex, zytiga, xtandi, etc. Has he had Provenge?
Yes. He did.
Need more information. Does he have symptoms ? Are mets showing in bones only or in organs too ? more past history will give people more ideas as what is possibly best option now.
Welcome zengirl,. Your words give hope to me and those just beginning this voyage . 22 years post stage #4 is an accomplishment ..I too was #4 non- almost five years ago . After a rough start with pc I’m lucky to be here today . I think that you’ll get a big responce from those in the know ...Peace. Scott
Hi Scott- Good luck, my friend, Yes, there is hope.
It is actually my husband, not father who has prostate cancer. He is 75 now and was diagnosed at 53. This site is stunning with the information that everyone knows.
I did understand that ,sorry. I too was 53 with a similar dx.. You probably know more than most of us about APC after so many years dealing with it .. I welcome your knowledge and experience here .. Thank you .
How is he feeling? Any pain?
You have an enormous supply of knowledge here zengirl. This site and everyone I’ve been touched by support a total new approach to life. Get the best treatment and tests and total analysis of your disease... Glad you found help here.
Hi Zen Girl,
Tall Allen is on the ball about Lu177 and PsMa scans.
I live in Australia where anyone can buy a course of Lu177 treatment for about usd $27,000.
I have just survived 10 years after 2009 diagnosis of Gleason 9, inoperable, at age 62, low Psa of 6.
I had ADT and EBRT, IMRT, and Cosadex, Zytiga, and Chemo and Psa just went up / down as each thing worked then stopped working, or didn't work, which was case with chemo last year. No mets could be seen until 2016 with PsMa Ga68 scan. Only 2 small mets, but for next 2 years and 2 more PsMa scans the number of mets and size just increased.
After chemo which made Psa go from 12 to 50, Psa went down to 25 before I began Lu177 at 4 Nov 2018. I had 4 shots by May 2019, and Psa went to 1.7. But after No 3 shot I began taking Xtandi. It is said to make Lu177 work better. Psa is now 0.32. I have no more pains from bone mets, and follow-up PsMa scan 2 months after last Lu177 shot said bone mets were healing, no soft tissue mets could be seen, and so docs all said that I had a wonderful response with Lu177.
Docs have not said anything about Pca which could not respond toLu177.
So I just have to wait and see if Psa goes up again and maybe I can get a repeat couple of shots as docs suggest.
Today I cycled 82km, and I feel quite well at 72, despite being 72, and suffering lingering side effects of chemo, and some side effects of EBRT affecting a muscle in hip, and plus also having had ADT since 2010. I have proved to other men my age that testosterone is not needed to be healthy and fit if a man has will power.
So far so good, but last year I thought I'd be needing palliative care by now. Instead, I could easily live another 4 years. Other therapies may become available.
Most men in USA seeking Lu177 go to Germany for it. The scans needed can be done in US. I met 2 men from USA getting Lu177 in Sydney. They would have used Skype to talk to doc selling Lu177, then just flown to Australia for each shot at 8 week intervals. To some men, the return air fare is the least of their concerns if it means they'll live a lot longer. But one man from New Zealand did not do so well with Lu177, even though his scans looked like it should work. He was in 30% of men who don't get a fix with it. I think I was very lucky.
The Lu177 can give mean extension to life of 14months, but that's based on data from mainly end stage patients, who often began Lu177 treatment with much higher Psa and much larger met lesions. Some get no benefit, some get a whole lot longer. In Melbourne, they are trialling Lu177 as initial primary therapy for Pca. This approach is novel, but maybe would have been just great for me in 2009, because I just had ADT + EBRT, and the latter did almost nothing. I could have had other therapies after initial Lu177, but I have not seen results of this trial yet or seen if Lu177 can kill tiny mets that are unseen in PsMa scans.
Patrick Turner.
"I live in Australia where anyone can buy a course of Lu177 treatment for about usd $27,000."
Where are the best places you know of in Australia to get lu177 treatment?
I am currently planning my own trip to Sydney for Lu-PSMA treatment as soon as I recover from some EBRT to PSMA positive lymph nodes discovered on PSMA scan at UCLA. I am going with Theranostics Australia (AKA GenesisCare) who have clinical facilities in Eastern Australia, Perth and Freemantle as well as in Sydney which is more convenient for travel from the USA. I did my Skype consult with Dr. Nat Lenzo after sending him my PSMA scan disc and labs along with a referral form signed by my MO here. The cost is approx. $8,000 US per treatment. (Not all patients do 4 treatments. It is monitored as you go.) Repeat Ga-PSMA scans there are less than $800 US. These costs are considerably less than in Germany and they do not require hospitalization - just self isolation in your hotel for a couple of days. Dr. Lenzo and McFarlane are very congenial and experienced in the field and active in LU-PSMA and Ac-PSMA research. These are the reasons I chose them. You can contact them to inquire. Just do a search for Theranostics Au or GenesisCare.
I’m told that the people are nice there ..a nice place to go .Best of luck to you ...May this treatment serve you well .
You can contact Theranostics Australia at theranostics.com.au/
The headquarters of TA is in Perth. It is the company providing Lu177 and
it is administered by Genesis Care, who administer a number of doctors to allow them spend more time being doctors, and not have to manage office staff. Try the contact information at theranostics.com.au/contact/
MateoBeach also wrote about TA in his post.
I suggest you phone TA at the phone numbers provided.
Mateo Beach mentioned cost was usd $8,000 per infusion, but the present exchange rate is usd 68c : 1.00 aud, and I paid aud $9,600 for each treatment,
and PsMa scans were each aud $700.
Therefore I don't see why costs in usd would be more than usd $6,528 for each treatment and usd $476 for scans.
TA may charge more for overseas patients than they charged me as a local Australian.
But there are at least 3 scans needed for the usual 4 treatments 8 weeks apart, there's an initial scan before you talk to any doctors, then another about 1/2 way through the therapy to see what is going on and a third scan after the 4th treatment to see if it has been successful or not.
Now this may vary, because if Psa keeps increasing and the second scan shows no improvement then it would be pointless to continue with Lu177.
In my case, Psa was 25 before first treatment, and almost same at second and doc was not sure if it would work for me, but it seems to have worked, but it took 4 treatments. Some men only get only 2 treatments and get a good result, but I have read of men needing to return again because it was not quite enough.
The scans cannot be obtained in any of the days when the treatment is scheduled. So if you travel from overseas you would have the scans in your own country and only spend 2 days in Australia for each infusion of Lu177.
Its a fairly long flight from USA to Sydney, and I assume its not cheap.
If you want all 4 treatments here including 3 scans it would mean stay of over 6 months, and the accommodation cost could be high, see airbnb.com.au/s/Sydney--Aus...
I live in city of Canberra, 300km from Sydney where I got Lu177, so I could get all scans where I live, talk to docs via Skype, and then get a train to and from Sydney. I stayed 2 nights with a sister in Sydney, so my costs were very low. So for anyone coming from OS there has to be some careful planning because the LU177 used is prepared during the week before you get it, and it has a short half life so must turn up at the right day and time.
I was able to turn up at 9:30 am, and have infusion by 10am. This made me slightly radioactive, and it was measured during following hours spent sitting in a chair with a saline drip of water. By about 2:30pm, radioactivity had reduced to a level considered to be safe enough to permit me to travel by a taxi or train to my accommodation. Its recommended that you keep away from a partner or children. TA can explain all this but its all easy to follow, and there is no need to spend time in a hospital, unless you had serious mobility problems.
I agree with Mateo Beach that Dr Lenzo and Dr Macfarlane are very competent specialists in this field of nuclide medicine.
Patrick Turner.
Have anyone seen any kind of list of the” mean extension to life” offered by the various treatments for prostate cancer alone or in combination?
The mean extension to life needs to be understood.
"mean" does not mean nasty or lousy. The mean time for a drug to work is different for most ppl, so if the "mean time" is say 14 months then the number of ppl who find the drug works for less than 14 months is equal to the number of ppl who find the drug works for longer than 14 months.
14 months is mean time for Lu177.
But for ADT, it is maybe 3 years. For Zytiga its about 8 months, and I have never seen a full list or mean times for all drugs.
Mean time is similar to average, but average adds up all the time ppl got a benefit, and the total time is divided by the number of ppl. Where some did not get a benefit, their time is counted as zero. If someone got remission, their time makes the average look to big.
The mean time does not count the time; its an account of who got less or more than a certain time. Mean time for Zytiga is 8 months, and that's what I got but my oncologist said he had a patient get 2 years.
Mean time for Provenge is 4 months. I had a man email me to say he had got 9 years, so he must have got his Provenge soon after it was approved, then been extremely lucky, because his treated white cells kept replicating and their ability to kill his Pca remained.
I had 6 years of ADT suppression of Pca. I knew a man who got only 3 months. He died less than 3 years after diagnosis, because nearly everything tried by his doctors didn't work for very long and his Pca kept mutating so fast it soon became untreatable by anything known. Nobody knows what their Pca will be like to deal with. At least it is not usually a fast killer. My sister got Oa and was diagnosed too late like so many, and was dead 12 months later after 4 chemo shots that gave very brief cancer reduction before it continued. My father's melanoma was also a fast killer. But he'd ignored the little black spot on the back of his leg. My mother never noticed it. Ppl can be so involved with life that they forget to watch and feel the changes occurring to their bodies and have these things investigated.
I had regular Psa tests for 10 years before diagnosis at 62. But my Pca made a low amount of Psa, so by the time docs thought I should be examined fully when Psa went to 5.0, I had a monster dose of Pca at my PG and it had come outside capsule, and was inoperable. It had most likely already spread to many places.
There are statistics on likelihood of getting Pca and maybe it was 1/20 for men of 60, and the number reduces as men age. But then my diagnosis
with a Gleason 9 and inoperable meant chance of dying soon from Pca was much greater than for a man who had a Gleason 5, then had a successful RP, or had 2 years ADT + EBRT and where Psa remained undetectable for 5 years. None of the men who get their Pca completely removed by surgery
or other initial treatment are posting here. They don't have a problem in common with us. They may have permanent ED, but some will have a prosthetic implant to please their wife. They are not needing ADT, so their bones and many other things remain in better health than those of us who have to cope with ADT. I've had to deal with ADT for last 9 years. I seem to be keeping my body in good shape by cycling 200km+ a week. But the statistics about longevity and QOL vary hugely. There are no lists that make much sense about many things.
Patrick Turner.
If the mets are in the bones you could consider Xofigo. It's a radiopharmaceutical that seeks out bone activity instead of PSMA. Just throwing that out as I hadn't seen it mentioned.
Sorry you got bad news, but wow, 22 years! I'm at the other end of that having just been diagnosed a year ago at age 50. It's so hard to convey to friends and family that I could be here a long time but battling the whole way. Most people think in terms of either "cured" or "close to death".
So, we just started to think of it as a chronic illness like hbd or diabetes. That's actually what the doctor told us and, then, we did, after the initial shock of it all. Here was someone who was healthy, worked outside, never drank or did drugs and never ever got a cold. You have cancer but you live and you work and you love. And, you fight. Hang in there. You have a long life ahead of you.
Great advice zengirl...you offer much strength to us through experience .👍
Welcome to our little world. Wow 22 years good run. I have read that Germany would be a good place to start. Some of these guys know a lot more than me. Keep fighting the monster 🙏🙏🙏
You didny say how old he is ...22 years is a better than most w s4.....time to think about qol...imho....
From her post above: "He is 75 now and was diagnosed at 53".
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/21/2019 5:17 PM EST
Amazing
Where are you located? What treatment center(s)? Doctor's name(s)? All info voluntary but it helps us help him and helps us too. Thank you...
22 years... Great!!! Tell him to keep on keeping on and posting here for good information and camaraderie.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/21/2019 5:21 PM EST
We are in Southern California. . We went to City of Hope and found out that it was worse than we were told by a urologist. Then, my friend found a clinic in the Marina del Rey, called Healing Touch Oncology that dealt with only prostate cancer with Dr. Strum. It has morphed into Prostate Oncology Specialists still in the Marina. We love all doctors, Dr. Scholz and Dr, Lam, but Dr, Turner has the best communication skills with family, by far and best bedside manner.
Thank you for your quick and detailed response. You may want to copy and paste it on your homepage just below your user ID for future inquiries. It's hard to find good Oncologist who have great bedside manners. Your husband is lucky. May he beat his Pca for another 22 years. Regards,
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/21/2019 10:54 PM EST
PCSPES and Ethinylestradoil.. It is what works for CRPC.
So that is a pretty impressive amount of survivor time. Good luck going forward. How has his quality of life been?
Hey Zen Girl! Great to have your support on this great site. I was interested in LU 177 when I first read about almost two years ago. I knew back then if you went to Munich for treatment it was $8000! Didn’t know anyone was administering it here in thr US. Also have not had any immunotherapy offered to me. I’m stage 4 metastasis to the bone. On Lupron, Zytiga, prednisone. If I didn’t have Vicodin I don’t think I could function at all! Hate all these drugs and how they effect you, feel like I’m walking dead! But guess there’s only one alternative. So what do you do?
Glad your husband has been going for so many years! I’d be curious as to what and where he had immunotherapy. Talk to you soon welcome to this fantabulous group! I’m writing a novel so I don’t go on line as much with this group as I would like too! 😎😎💪💪😎
We didn't qualify for LU177 because he had a couple of different kinds of chemo. But, they are administering here in the US, I think still in New York? He has had Provenge, Ketruda, and Optivo. He has had at least two different kinds of chemo. He was staged 4 back in 1997. We went to Stanford last November for that special scan and he lit up like a Christmas tree showing its in the bones. He is on chemo and Erleada. He isn't as spry as he used to be but he is also 75 and has been through about 23 years of taking a lot of chemicals into his system. I hope that you have support and care. I am a great cheerleader so if you ever need to reach out to me, I am here for you. Go, warrior!
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