I completed five of the six infusions in the VISION clinical trial before I was excluded due to low hemoglobin. The initial and main cause of the low hemoglobin was my bone marrow transplant in late 2017, but the level continued dropping. Lutetium reduced my PSA by about 300 per infusion, in a linear fashion. I started with a PSA of 1850 and my current PSA, six weeks after the last infusion, is 300. It also reduced the size of my lymph nodes and liver mets by 70%. It did not stop the growth of my bone mets or creation of my brain mets. I had ten sessions of whole brain radiation, ending a couple weeks before my latest PSA test. So, I'd say Lutetium was overall good for me, but not a silver bullet. If I hadn't had it, I'd probably be dead by now, but I'm still going to die of cancer, just a year or so later.
Done with Lutetium: I completed five of... - Advanced Prostate...
Done with Lutetium
Thanks for the update. I'm glad it had at least some benefit. My friend has liver mets, so I will tell him about your experience.
I'm glad lu177 did what it did. I wonder if a re-challenge with any of the prior medication could prove effective.
My doc is also thinking that, but more because I did an experimental bone marrow transplant at the end of 2017. I just restarted taking Xtandi.
Who is treating you currently? Are you planning on returning to JHH?
My medical oncologist is Dr. Denmeade at JHH. He administered the trial in which I received the experimental bone marrow transplant and has related cutting edge (unproven) ideas for my future treatment.
That is who we are working with as well. I like him.
Re-challenge with Xtandi did not work after BMT trial. (We worked closely with Ardra and she was AMAZING) Still have the 10 month and 12 month immunizations left.
At last visit (9/26/19) PSA was stable (53) but radiographic progression on scans. Going to try Lynparza starting 10/2/19.
Still curious as to when you contracted shingles. Did it have anything to do with the BMT?
Wow Beauxman . Those pics are just in time for Halloween . You’re fighting one hell of a battle dear Sir . 🙏
Hello Beauxman...I'm riding the same train you were on...Just finished Lu-177 treatment #2 (Vision Trial) PSA has dropped from 2200 to 700 but latest scans show bone mets unchanged but no soft tissue mets detected yet..My blood counts are low but holding steady..I was hoping for a good solid remission (aren't we all?) but we shall see.. Please keep us informed as your journey progresses..
Hi thanks for sharing your experience. Good to see it helped in some ways if not all. I do hope some other treatments can now help with the bone mets.
Goodluck!!!
I am sorry the silver bullet was not found in Lu-177. I am wondering how you are fairing as far as symptoms and how challenging they are. Pain? Brain function issues? Fatigue? I imagine you are trying to live your best day every day that remains. What do your “days” look like?
They told me the brain radiation treatment would give me fatigue for two months, and the Xtandi I just restarted causes fatigue, so that just adds to the fatigue from my base ADT and the gabapentin I'm taking for shingles neuralgia, so some days I only get out of bed for the restroom or meals. Most days I can work in my office for a few hours. I can still drive, if I don't take the gabapentin. I walk slowly, especially up or down stairs. I recently visited a garden exhibit with my family, which involved a mile of walking, and I let them push me in a wheelchair, because I would have gotten too tired. That was a new experience, accepting their help.
My legs have lymphedema and hurt whenever I move them. My arms have pain that comes and goes. My back sometimes has pain with movement. I rarely have pain when still. I use oxycodone as needed.
So sorry to hear this, Beauxman. I really feel very bad for you.
Since I am an ignoramus on this topic (more or less), I cannot help out.
But, I am really willing you (I don't believe in prayer) to get better.
After all you have tried, you deserve a break.
All the very best to you, Beauxman !!!
Thanks for sharing your experience, and for leading the way in the war against this f*%ker.
Thanks for your information. Sounds like a similar summary to myself where 4 cycles of Lu177 shrunk or eliminated 6/7 soft tissue foci but did not stop the development of subsequent mets which I now have. Perhaps it has given me an extra, 1-2y of life. Precious. All the best. =Rob
Did Lu-177 give you bone marrow problems ?? Or, xerostomia ??
I got both after just two infusions of Lu-177.
I already had bone marrow issues, because I had a bone marrow transplant one year before starting with Lutetium. As for preventing dry mouth from radioligand therapy, I recommend eating more MSG. See isosolutions.com/monosodium...
Thanks, Beauxman, much obliged.
After 4 cycles of Lu177 there was no bone marrow issues or xerostomia. I did have previous mild anaemia due to 4y of ADT. But I did have evidence of liver damage with transaminase levels 7x upper limit of normal. None of this was symptomatic. Cheers, Rob.
So, what treatment are you going to be doing now ??
I'm currently on Xtandi with plans for some BAT and immunotherapy.
Thank you, Beauxman. I wish you all the very best.
What is whole brain radiation? Did you have Mets in your calvarium? Had they grown beyond that into the brain? Did the radiation help? My husband has numerous Mets in his calvarium and now has a numb jaw and chin. Have you done Radium 223 for bone Mets? I really hope that the treatments are effective for you for a good long time!!!!
Like it sounds, whole brain radiation isn't targeted to any particular spot in the brain. The cancer was in the dura lining of my brain, on both sides. I'll get more scans after three months, but it did eliminate my symptoms of tingling and numbness in my right arm and leg. I can't do radium right now because my hemoglobin is too low. Thanks for the positive thoughts.
I am hoping for the best for everyone out there that is undergoing treatment after treatment! Some days are dark, and then other days there is light. Perhaps it is just our perception that life on this planet (as we know it) is better than leaving it? I just hope that we can understand and deal with this together and not separately, and support each other! I think this website does that, and I truly appreciate everyone that takes time communicating their experiences and their expertise.
I hope to provide some help with the following information:
If liver mets persist after Lu177 treatment you can try the SIRT radiation to treat these:
jnm.snmjournals.org/content...
The member tango65 mentioned this treatment before.
In brain cancer Cyberknife or SBRT radiation to the located lesions can be done instead of whole brain radiation. This radiation can be repeated, so you may get that done if new mets develop in your brain.
I guess you already had genetic testing. If not, a BRCA2/1 or ATM mutation could predict success with PARP inhibitors
news.cancerconnect.com/pros...
and a MSI-H/dMMR mutation could be treated with immunotherapy.
"I'd probably be dead by now, but I'm still going to die of cancer, just a year or so later."
You will, but only after your two good looking sons receive their doctorate degrees. BTW Your wife ain't bad looking either and I agree you are a "Beaux" man just like me.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/27/2019 6:01 PM DST
I had 4 x Lu177, Psa was 25 before, now 0.4, all mets have gone so low in scans the docs don't think I need more Lu177 for a long time, and they are well pleased. They didn't see any mets which are non-conformal with PET part of PsMa scan, ie, all my mets make PsMa.
But I think if I had Psa 1,850 as you say you had, then outcome is sure to be less certain and perhaps a large % of your Pca may not generate PsMa avidity, so nuclide theranostics could not work. Maybe Olaparib might if you are Brca1+2 positive.
But had Lu177 not worked for me, I might have had Olaparib etc, but that's not always a success even with Braca1+2. So its just more powerful chemo, or palliative care, and its time to quit the fight. I find it hard to imagine the side effects from whole brain radiation. I think you are in a difficult situation, and wish I could offer some knowledge that might help you more.
Patrick Turner.
I was 1,850 before the Lutetium, and 300 after. I am pleased with that.
I am a bit puzzled by the scans you showed which seemed to have little reduction of the white patches. There's no doubt Psa reduction of -83% is good, but Psa of 300 still seems very high to me. If you could get that much Psa reduction, and presumably that much Pca reduction, then there is hope something else might give more reduction.
But I know one guy who had 7 x Lu177 shots and doc giving me Lu177 said one man in Germany had 10 shots.
I was very alarmed when my Psa went to 46 after 4 chemo shots, so increase of +400%. Psa was 12 before chemo. But my onco said as soon as he was sure chemo was failing, he'd refer me to Lu177. One doc here was sure chemo was failing after 2 chemo shots, but with chemo there is usually a "flare" in Psa during first few shots, and mine was +300% which usually meant the chemo would not have given me much extra time alive even if I had 10 shots. But then then I watched a friend have no flare, Psa went from 40 to 2 after 2 shots, and then stayed flat awhile before rising to 40 after 10 shots over 30 weeks. He had Brca1+2, had PARP inhibitors, wanted LU177, but Psa rushed up to 432, mets appeared in his liver with no PsMa, and he died a month later. Nearly everything docs tried had little effect.
He may have done better to get Lu177 earlier but it was not known if Pca in liver had mutated before or after chemo failed.
The work being published now by professor Hoffman at Peter Mac in Melbourne sheds much light on why Lu177 does not always work because a portion of total Pca does not have PsMa avidity.
But from this doctor's work I can see I may have more Lu177 if Psa rises, and get a lowering of total Pca and maybe get 40 months.
But not all get this, so IMHO, scans must show the different forms of Pca present. But Dr Hoffman does show scans of men with differentiated Pca.
You need the best doctors now.
Patrick Turner.
The picture is not a before and after. It is all from one bone scan on one day with variations in imaging sensitivity and direction. I was just illustrating that I have a lot of bone mets.
Ah, now I am informed. I can see you can say you are in trouble, or were when those scans were done.
But often its not the picture that matters, its what the radiologist says in the report for the scan, and most scans include a statements about previous scans, hence doctors are informed about whether you are getting a bit better or worse. Radiologists have seen vast numbers of scans, so they see things many doctors would miss. Often scan reports use language that may as well be in Martian, but doctors are expected to speak Martian fluently, and translate into plain English for you with no Billydoodoo-shyte.
I do hope you find some more treatment that works.
Patrick Turner.
if you can access it somehow there is another radioactive material. It's called actinium (I guess). It is an alpha particle, while lu-177 is a beta. Meaning a lot more potent. therefore may be effective.
Looks like lutetium is next for me (if I can get it) 
PHASE 3 ECLIPSE STUDY FOR (MCRPC) PATIENTS- FIRST INFUSION OF Lutetium- 177
Lutetium-177 update after 2nd infusion
Lutetium treatment timeframe
First dose Lutetium and adding enzalutamide
