After 3 injections (4th tomorrow) my PSA has dropped from 110 to 0.56 today so great results in my book. Also my last scans showed no new metastasis and resolution of most of my bone Mets.
I’ve had some side effects but they are manageable and I’m finally starting to get energy back. After reading about all the warriors we have lost over the last several weeks I can only hope this new treatment can help many deliver some blows to this disease moving forward. To everyone who is fighting don’t stop fighting we’re on the front line, and I believe this beast can be slayed some day.
To all our care givers ,spouses, partners, significant others, etc. thank you for not giving up on us and giving us the reason to fight.
Enjoy life ,family and friends!
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Jackpine
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So glad to hear your good news! We are headed to Rochester for number 4 next week a praying for a big PSA drop. My husband experienced a little more fatigue on the third round but has a much deceased pain level in his large bone met. We have our fingers and toes crossed!
I assume you mean the Mayo Clinic for LU 177 treatment. Is it part of a clinical trial? We tried to get my husband into the trial at MSK but it would not be helpful if he got the arm without the drug so he did not qualify. Sarted Cabazitaxel now.
I understand not wanting to be in the arm that did not get the LU177 but my personnel decision was based on I had a 66% of getting the LU177 and if I didn’t get the drug you are not obligated to be in the trial. I was fortunate to get the drug and am having significant results.
That’s what we thought but the Dr said he was not elegible. I think he knew we would likely drop out if he got the standard of care arm so did not offer it. Very disappointed with our experience there.
Sorry to hear that your doc took that approach. At the Mayo they encourged us to see if we qualified for the trial and made it clear that it was ok to opt out at any time .
He failed Docetaxel and PSA rising rapidly. If he did not get the LU177 arm, standard of care would not have offered him any hope. I think the DR knew he would drop out immediately if he got that arm. Instead the Dr recommended Cabazitaxel which hopefully will work. We are not going to give up on the possibility of using it as compassionate care after Cabazitaxel or a different clinical trial. Good luck.
Yes, my husband is in a trial and we got lucky on getting the drug. It was pretty good odds because 2 out of 3 got it. Sorry to hear they did not give you a shot at getting in. If my husband had not gotten the drug arm he would have definitely dropped out as we live in Hawaii and it is quite exhausting for him to send that many hours on a plane. Pretty costly to fly too.
I hope your husband does well on Cabazitaxel. My husband had chemo in 2015 and had an undetectable psa for about 11 months.
Wow that is quite a trip. We live in Rochester but in NY. My husband also sees a Dr at Columbia in NYC . Seeing him in March to talk about next steps. He did Taxotere last summer. It lowered his PSA but did not last thus chemo again. May ask him about the Mayo trial. Thanks for the info. Appreciate all the help this site offers.
LU177 PSMA as part of a trial but it is available in Germany and Australia as approved treatments. A number of site members are either in drug trials or have sought treatment in Germany or Australia.
Finally catching up after some time away. I am so happy for you and your family and happy for all the future patients who will have the opportunity to have this treatment and who will hopefully have the same success you are having!
Haven’t seen any updates since your 4th LU-PSMA infusion. My husband will have his 2nd infusion this week but his PSA went up at the end of the first 6 wks. He has fatigue and nausea (controlled by med) but doing muh better than when on chemo. I hope his PSA starts dropping soon.How is it going for you?
I’ve now completed 6 cycles of LU 177 and PSA went from 110 to 0.5 so very pleased with the results. My scan are clear with new metastasis and existing Mets have resolved. We think I still have one lesion that is expressing PSA so we will be doing a Choline PET scan to find the spot and then we’ll do SBRT. Feeling very good!,
Hi Jackpine... Wonderful news!!, congratulations!!!
My husband is going to start Lu-177.. We will have to travel to Indiana for the scan, but can receive the infusions here at Jefferson in philly. Do not know all the details as of yet.
When you get a chance Could you tell me Was the scan like a regular scan, how long did it take and how long were the infusions for the ?u-177 and did you have to stay overnight in the hospital afterwards.? Where you live were you able to get the scans and the treatment in your state.
Reading your post, I felt so happy for some good news and it gave me such hope for my husband.
Great to here your husband will be receiving LU177 as it has been a great treatment. Scan take about 1.5 hours they use a radioactive tracer.
The injections themselves was about a 2 hour, the first hour is doing questionnaires, getting a brief physical and they prep the LU 177. Once it’s ready they will have you leave the room and they will inject the lU 177 into the saline drip. And they will keep him for 1 hour and then you are free to go. It does not require a hospital stay. The first injection I had severe fatigue but I had wide spread bone metastasis. The other injection minimal side effects.
I received my treatment at the Mayo in Rochester MN but I had my PSMA scan in Houston.
Hi jackpine what’s the update on your scan after your 6th treatment. My friend starter the 1st injection last week and has fatigue, what was your experience while on the lu 177, if you do not mind sharing. Thanks
After my initial LU177 injection I had severe fatigue for about a week but I also had a lot cancer for it to go after. The resulting shots were much easier and as the cancer shrank I felt great!
My last scan did show and avid lesion on my 5th anterior rib and a spot on my left hip that we have now treated SBRT. My next scans are in early October.
Hi Jackpine, your story gives me so much hope as my husband Al has just had his first Lu177 treatment in New Zealand. We are awaiting his PSA test results in 4 weeks time. Apart from some fatigue he has had no other side effects and the post scan shows excellent uptake in all bone tumour spots. We have SBRT available to us here in Dunedin and would be over the moon if our results were anything like yours. Thank you and all the best. x
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