Received my 5th injection of LU 177 PSMA on Friday with minimal side effects just some fatique. I did have a slight uptick in my PSA from 0.56 to 1.1 but since I started in October at 110 and doubling every three weeks I’m still very happy.
My scans are showing resolution of my bone Mets and a spot on my lung which is awesome. I was informed I need to have my spine evaluated as the scans are showing deterioration of my vertebrae between tone T 8 and T12 region where I have a lot of metastasis.
Feeling great about the treatment, have good energy, and loving life. Now that spring is here ( almost still have 14” of snow on the ground) looking forward to golf and fishing.
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Jackpine
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I’m doing the LU 177 injection every 6 weeks as part of the Vision trial and I get Lupron every 4 months as it works with the LU177. I’m off of all other treatments. I’ll receive my 6th and final injection in early May.
Here in Bombay, I was told that the infusions would be just three in number, two months apart. Then the MO would evaluate whether more were needed or not after a PSMA PET-CT scan.
Thanks again, Jackpine, great to see you getting remission. Hopes it lasts a long, long time.
Thank you for the information! Much appreciated. We are keeping this in mind for the future if his treatment stops working. Our first choice would be to get into a clinical trial here but good to know this is an option. May I ask the name of the hospital?
Congratulations on your good results you are getting. What other treatments have you had? And where are you located? I've been looking into LU 177 and what I've found so far looks promising.
I’ve had a surgery, followed By 36 fractions of radiation, then 6 rounds of Taxatere, then 25 fractions of radiation, 1 fraction of SBRT to my spine, Lupron, and Zytiga which failed after 2 years. The LU 177 is by far my best response of any treatment. I’m located in Wisconsin and go to the Mayo in Rochester MN
I am fortunate to have two MO's . My regular close to home and my other 25 miles away at UCSF. Started Zytiga , Lupron and Prednisone first of December 2018 with both of them agreeing. Never having a big number PSA I was at 1.99 when ADT started. For me as both MO's stated PSA is not my indicator . PSA now down to 0.03 . They will of course watch for uptick but will do scans every 3 months. First one this month showed biggest nodule moving from 9mm to 7mm. Next scan and meeting is with UCSF MO in May. Hope is that scan shows smaller nodules again. Regular MO in meeting this month stated that he hopes I can take the Zytiga for a lengthy time. Seems that my nodules are down in size but doing so slowly. My next course he mentioned would most likely be Doxetaxel.
Can tell you just came off of a cold. Probably worst ever. Thought THAT was going to kill me.... Again thank you!
If I would not have heard from the patient I mentioned I would also prefer ADT+Zytiga. After you start with ADT the mets will usually shrink, about 30% of their size. But they will not go away. As far as I understand you would prefer to get rid of them.
You could give the ADT+Docetaxel combination a try and see how it works for you. If you tell your MOs you would prefer a more aggressive approach in the hope to remove most of the mets from the PSMA PET/CT they will not object because that is an alternative therapy mentioned in the guidelines. And was the standard therapy before good results for ADT+Zytiga were published recently.
You can restart with Zytiga again after you recovered from the Chemo but usually one considers simple Lupron to be sufficient then.
Also came off a cold and will go to work on Monday again.
Great news Jackpine- did you have to refuse a second type chemo to get on to vision trial? Also were you castrate resistant? Thanks for your reply and keep up your fantastic response
I am castration resistant, if I had not received the trial I would have needed more chemo. I was also looking at going to Germany or Australia for LU 177 if I had not been accepted into the trial.
Do you know what the dose was per treatment? Do they just keep giving more injections until there is no further benefit and side effects outweigh benefits?
I receive 200 mc of radiation with each injection. The trial called for a minimum of 4 injections with up to 6 depending on the response.
Since I have been tolerating the drug well and showing strong response they are giving me 6 injections. I had one on Friday and should receive the next in early May. It will be interesting to see how fast the beast comes back.
Congratulations on that great response. I wonder if the PSMA eventually disappears as the cancer adapts. It would be difficult to distinguish that effect (reduced PSMA avidity) from the reduction of the cancer. I guess that's where the CT comes in - as long as the size is less, it is working. It would be interesting on a clinical trial to see whether the cancer (but not the PSMA) eventually comes back as evidenced by some other type of PET scan.
Another question (I hope you don't mind - you seem to be the record holder): Did they give you an instruction sheet advising you to avoid chelates (e.g., B-12 supplements, EDTA, chelated iron, calcium, and other minerals)? The issue is that Lu-177 is very loosely chemically bonded to the rest of the molecule and can be easily displaced. We wouldn't want raw Lu-177 wreaking havoc systemically.
They do warn you to avoid most supplements. I’ve had low hemoglobin and platelets, they won’t give the shot if you drop below hemoglobin of 10 I’ve been as low as 8.9. I’ve been able to hang around 10.5 with improved diet.
The treatment isn’t bad from a side effect stand point.
Great response to the drug. Every victory is a blessing. What do you mean by resolution of your bone mets if I can ask? Did they go away or sort of healed? My husband had his second injection yesterday. No one mentioned to stay away from supplements, just a ton of restrictions.
My bone Mets are healing but the metastasis is gone. There are a lot of restrictions but you do get used to it. They do not restrict you from using supplements especially if you have been taking them and in my case I needed some supplants to keep my hemoglobin up. I then just changed my diet to keep it up.
Congratulations Jack, I'm sure you are ready for that snow to melt and to get outside again!
Thanks for going on the path ahead of us and sharing your story. My husband is already having great results as well. He started doing Xtandi and just after 2 injections, the PSA is 1.4, down from 34 in December and scans show improvement. Yay for Lut-177 🎉🎉
I've had 3 Lu177 and before the 3rd the Psa had gone from 25 to 17, a very small Psa reduction, but no more bone mets and less soft tissue mets were seen in PsMa But my right hip is sore if I walk or cycle, otherwise OK.
Doc thinks maybe I have lots of mets that don't react to Lu177, including one sitting in bone marrow of R femur. Mets can produce less PsMa to attract the Lu177 + ligand. So we don't know if mets are dying off, or they are just mutating to stop Lu177 having an effect and are growing, maybe causing pain, but arthritis was also said to be a cause. I am in middle of having EBRT to the hip. And I started Enzalutamide last week which doc says will make bone mets produce more PsMa so that next Lu177 will be more effective. Doc is also talking about PARP inhibitor and test to see if I am Brca2 positive, probably yes because of female family history. So more things will be tried but I know a guy who did not respond to PARP, which seemed to fuel the Pca, and Enzal had SFA effect, then liver mets came and he's not answering his phone so he may have quit the fight. It seems his Pca is a bit or a lot endocrine type, RP and RT and ADT did almost nothing for him, 10 chemos failed. Maybe he is not strong enough for Lu177.
So my fight is far from over,
Last Wed I had a full body CT bone scan with radioactive contrast agent which should show mets which make PsMa PLUS those which do not. I had a bad 2 days after that, walking like a 90yo, sore hip.
So I have no clue yet exactly what progress is being made but some other men in Lu177 trial in 2016 said it took 3 shots to get bone mets to decline.
One had 7 shots. There's only so much you can have before the risks for leukemia etc begin to matter. I'm 72, diagnosed Gleason 9 inoperable in 2009, low Psa, had 6 years suppression with ADT, Cosadex, salvation IMRT, Zytiga, Docetaxel failed badly and so I don't know how long I have left.
Docs will probably call me in this week for chat about what next.....
From what I’m hearing they are feeling a 50% reduction of PSA is considered a success and hopefully your Mets can resolve.
In my case I’ve had great response LU177 but no lasting response to Lupron, Taxatere, Zytiga etc. This cancer is very adapt at changing to beat the drugs.
Was thinking about you Patrick. Haven't seen you reply in a while. I am glad the fight is far from over. I am feeling much better than I should be. Bone scan will be next month probably. Hope your scan is everything you want. Certainly sounds like you are taking a bicycle vacation. Hoping you will be back in that saddle again soon. Monte
I'll see how I go after RT to hip, but docs think its just arthritis, and if I cannot ride again, then so be it. I had both knees done in early 2017, and I would not be surprised if hips are now worn out. Some have no troubles doing twice what I did in my life with my legs. We all get gifted by Nature with whatever Nature can give according to DNA. I have things to do here at home, always doing something. I hope the CT bone scan throws more light on what the full situation is with bone mets. I have last RT to hip on Wednesday, then see if things improve. Meanwhile if I have to walk a bit I use Canadian crutches to get my arms to aid my legs to reduce the weight by 33% at least.
Good News - keep it up. You know you can combine fishing with golf now. You can tell your friends that you missed a crucial putt by the length of a good sized Chinook salmon.
My brother had his 4th injection three weeks ago. He is away on a cruise liner as a destination speaker at the moment. Eighteen months ago his PSA went from 19 down to near zero after 2 injections. His doctor in Sydney was very pleased. Sadly, his PSA started to rise after 14 months plus most mets returned, thus the two more injections. His PSMA PET scan after the first two injections saw his 30+ mets disappear.
The Theranostics Australia team now seem to think that this Ligand Therapy is an interim step in ones therapy. It is not a cure. Also some men don't do as well as my brother. The TA guys are working on newer peptides with hopefully better performance. They also feel that multi therapy might do better. More once my brother returns in two weeks and he gets another PSA test done.
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