I thought I should let the group know that I have completed the LU177 Vision trial with 6 injections received. The results have been amazing going from 110 to 0.5 and I will now be receiving. Choline PET scan to see if we can identify the spot that is still expressing PSA. If we can locate it we’ll treat it directly and hopefully push me to non detectable.
I’ve had great results but also know that’s not the case for everyone. Keep fighting but also take the time to enjoy life. I spent the last 5 days fishing near International Falls and had a great time with old friends while enjoying great fishing and the beauty of lake Kabatogma.
Stay Strong!
Written by
Jackpine
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Jackpine so happy for you ! Fantastic news ! One of the guys on our trial had one met left in his shoulder and was sent for radiation. These professors are doing amazing work !
I hope to be selected for the trial and lucky enough not to be in the control group. Was it apparent if you were in the control group or could tou tell?
The trial I was in you were told which group you are in. Process takes some time to be approved for the studies and wondering which group you’ll be in can be stressful but either way you get great care.
Stay positive and if you are not accepted in one trial there will be another one right behind it. Researchers are working hard on this one.
Did the sponsor pay for everything including the "supportive / best standard of care" treatments and drugs that everyone in the trial gets ? or did your own insurance or yourself have to pay for that ?
Hi Mary, I don't know if you remember me? We had a phone conversation a good while back. I'm not very good with all this technology, don't know what happened but I was not able to send replies?? Just figured it out by accident.
Well, I read your post that you hubby is not doing well.
Everything has failed Sam now and we are going to Indiana for a PSMA scan and then hopefully going to get the Lu-177 here in Pa. Would that be an option for your husband?
Nice to get an update on your husband. He is getting the scan next week but Hasn’t had chemo which he needs to qualify for the US trials. His other comorbitities have kept us running but we will rethink the cancer treatment plan based on the scan results.
Mary...Do you mind me asking where your husband would be getting the scan and or treatment if he qualifies? ... We were told we have to travel to Indiana for the scan, but have the treatment here at home.??
Hi, ...Me again, forgot to ask you....if you don't mind me asking where did you get the Lu-177. Do you live in the states?my husband and I were told we have to fly to another state to get the this scan that is a special machine that detects this PSMA that surrounds PC tumors. Don't understand why a regular cat scan with contrast would not be able to detect this. ??? Also how long were your infusion and did you have any side effects? I'm a little nervous about all of this.
I received my treatment at the Mayo in Rochester MN. I hope he is able to receive the treatment it has done wonders for me. The injection takes about 30 sec and a hour with a saline drip. Side effect hit me hard on the first injection, severe fatigue, nausea, loss of appetite After about a week I felt fine and other than some slight fatigue the day after the injection I feel great.
Could you tell me where you got the scan?... We have to go to Indiana... Jefferson hospital here in philly does not have this special scan machine that can scan for the PSMA but Jefferson hospital here can do the infusions. Was your scan similar to a regular CT with contrast?? So far I think my husband qualifies.
Ronnie through the Nebraska clinic (Dr. Nordquist) a clinic in Gettysburg is offering the trial. Not sure where in PA you are located but this may be an option for you and the Dr. there, unfortunately I cannot think of his name atm, is fantastic. Best of luck.
I get my firstLu177 injection today so this was a very timely post. Besides the Lu-177, I'm getting "best standards of care" - it's how OHSU here in Portland is interpreting the VISION study protocol. In my case, that's Zytiga, I've flunked everything else.
Your post was really heartening, Jackpine - hope it goes that well for me.
The isolation is a little hard but my wife and I slept in different beds for three days after each injection. We do have a dog but she’s not a lap dog and I would limit my interaction for several days. We don’t have any grand kids so avoiding children was easy.
More just being aware of your surroundings.
Great luck on the treatment I feel it can be life changing !!
I am on my 4 th infusion,and like Jackpine, I have to isolate myself to the spare bedroom. This is very confusing for my two small dogs who love to sleep on my lap. I found it better to close the door and isolate myself from the family for a few days. I also use and isolate the spare bathroom to myself and keep all my clothes in a bag then wash seperately after a few days to ensure radiation is gone. I also stay out of the family pool for a few days.
I drive myself home after treatment in order to stay clear of my wife.
It sounds like a pain but it goes really fast. The results have been extreemly positive so far.
PSA went from 80 to .36 Last scan still shows mets in bone but soft tissue ones are reducing. Bottom line is I feel good and can enjoy every day to it's fullest. Unlike chemo...
I am also on Zytiga / Prednisone and Lupron.
The Lu177 infusions have changed my life
Tell your husband to stay strong and embrace every day.
This is amazing news! Congratulations on finishing the trial and with such amazing results. I hope you have long lasting results, that give you many many happy, healthy years to come.
Great to hear from you and hope you are doing well. The treatments been a long road but I can’t complain about the results. Now just need to find the last bit and see if we can zap it and stop treatments at least for a while.
I just had 4 shots Lu177, Psa is about 3.5 2 weeks after No 4, down from 25 at start, and I just posted elsewhere about details and costs and also taking Xtandi. The fight is not over. My Pca had a low Psa for the amount of Pca found, and back in 2009 I had a Gleason 9 inoperable tumor with few symptoms
and Psa was only 6 at diagnosis. Many others might have had a Psa much much higher, so my present Psa and past history of Psa is worse than it looks. Now I have a hip problem that won't go away and maybe if Psa goes low enough, docs will let me have a new hip joint if I need one, depending on scans and X-rays etc. There is always a health problem to deal with once you go over 60, unless you are extremely lucky.
Good results so far congratulations!! I hear you on the hip I think I need a new one but would like to not be taking treatments if I need to have it replaced.
Yes, but docs know that most of anyone's body continues on normally until some part of it fails so badly that it dies. So when knee or hip joints are done, most patients are over 60, and many with "co-morbidities" a horrid term to describe maybe more than one possible life threatening condition, for example, they are 30Kg overweight, have diabetes, have a heart problem, or looming problem after smoking for 40 years, or drinking too much alcohol, and just not having the genetic make up that would let them ever live to 90 unless there were a pile of medical interventions. Most expense of a western nations medical bills are for ppl getting old who cling to life with 1,010 different problems.
So if my Psa goes low, and looks like I have a few more years, and a hip joint is the best option surgically, then they will do the job, and all without me paying one cent at the local public hospitals. My mum had a hip done at 86, and many of her friends had hips or knees done in their 80s or 90s. Gave them all a much better quality of life. When young, we are successful if we keep off the streets and out of jails. But as we age its a success if we keep out of a wheel chair. And can get out of bed. And get out of the house because we ain't depressed.
We caught primarily walleye and northern pike, plus a couple of smallmouth bass. The lake is 30miles long with hundreds of islands so fishing is great but the scenery really makes the trip.
Congratulations for the good news! we hope they'll find the last metastasis soon!
What will they do then? Is it possible to irradiate it after 6 Lu177 treatments? Or can the metastasis be removed?
My husband (Gleason 9) had 2 Lu177 treatments (in March and in April) and 2 of the 6 lymphnodes haven't shrunk one month after the second Lu177. He is not in a trial, so we have to pay a third treatment, or look for another solution....
For me we will be doing a C11 Choline PET scan to find hopefully the last of the cancer. They would then do SBRT or cryogenic ablation to kill it hopefully.
The Vision/Lu-177 trial is paid for by Endocyte, a Novartis company and is done in EXACTLY the same manner no matter where you have the treatment done here in the US or around the world. The first step is to apply for the trial after meeting the prerequisites of having had the standard of care treatments including one round of Chemo. The second step is to have the Galium 68 PET/CT to determine if you have the PSMA molecule that the Lu-177 attaches to. Approximately 85% of prostate cancer patients express the PSMA. If you are part of the 85%, you are then randomized at a ratio of 2 to 1, active to placebo side of the trial. Except this is NOT a double blind study like most trials so you immediately know if you are in the active side and will be receiving the Lu-177. Those in the side not receiving the Lu-177 will continue to receive normal 'standard of care' drugs and procedures. Any part of the placebo side that Medicare or your insurance will cover will be billed to them. The balance Endocyte will likely cover. You are under no obligation to stay in the trial regardless of being in the active or placebo side. My guess is this can't be a double blind study because by law they can't 'mis-label' a radioactive substance, leading you to believe you are getting the drug when you aren't. The Lu-177 injection itself is liquid quantity about the size of a large injection needle and goes in over 12 minutes, with saline following. The side effects like all drugs vary but they give you anti nausea drugs prior and pills to take for several days after. My side effects have been very minimal. My PSA went from 68 to 21 after one treatment. I've had a second treatment but no PSA yet. My care is being done in Scottsdale, AZ with the fantastic folks of Honor Health.
We asked another urologist to know if he could remove the lymph nodes by surgery. He didn't tell us about cryogenic ablation. But told us that there are often complications, after a classical ablation, that causes lymphoedema which can lead to internal phlebitis and/or aneurysm ruptures because it presses on internal blood vessels. Maybe a cryogenic ablation is a really better option?!?
We hope that you'll find quickly by the Choline petscan where your remaining met is!! Do they a Choline petscan because the Ga Psma petscan showed nothing more and the doctors think that your remaining met doesn't express psma?
My OC likes the sensitivity of the Choline PET scan. Mt bone scan and CT scans show no active disease but my PSA is climbing slowly so we need to find it and hopefully kill one last time
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