Has anyone here from Canada had experience with either of the two PSMA treatments. I was all excited about this until I looked into it a bit more and the results seem to be very mixed not to mention the cost of upwards of $27K per treatment (5 or 6 treatments seems to be typical).
I have completed 8 months of treatment hell with nothing to show for it and am getting ready to take a break.
regards,
Jim
Hello,
I live in Canada. I have had one infusion of Lutetium so far with three more to go. I am in a somewhat different circumstance than most others Canadians. The reason is I am part of a clinical trial being run by the BC Cancer Agency in Vancouver. The trial is investigating using Lutetium pre-chemotherapy. For me no side effects. No dry mouth, no nausea, no feeling of sickness. Nothing. The worst part was having to sleep in the basement, wear pull-ups, and use a separate bathroom. After many years of marriage we now possess a geiger counter. My wife wanted to test my radioactivity before being allowed back into the master bedroom. 😊 In my humble opinion, this is the way to go. By taking Lutetium now, I have options like chemo, Radium 223 and possibly Actinium down the road. Good luck!
Interesting. Any cost to you for the trial?
Hello,
Nothing! I am knocked out by the attention and care that the clinical trial team gives to participants. Blood work every two weeks. MRIs and CT scans every month. Although I am just starting my Lutetium journey, I have been a participant in this trial for eighteen months. When I began, I was randomly put on Arm B (Standard of Care). In my case this was Zytiga (abiraterone) plus Prednisone. This January I was allowed to crossover to the Lutetium arm. The trial is called SPLASH. Good luck!
that is interesting. All right. I live in Alberta, so I’m not sure if I would qualify. There apparently is some study AHC are doing out of the Cross Cancer Institute in Edmonton. But to be honest, I am at the end of my rope right now with any kind of treatment. I’ve had eight months nonstop of chemotherapy and replaced last week with Xtandi. The side effects have been brutal the last few weeks. I also had a couple of rounds of radiation on both of my groin’s. I also suffer from restless legs which have been brought back horribly by something this past while. So I’m going to take a break from everything for a few weeks to try and let my body re-jig itself. Then I will take another look at alternatives, but right now I’ve been pretty turned off with doctors appointments, tests, bloodwork, scans, and more doctors appointments. And all of this over the past eight months has yielded pretty well. Zero results. Because of my low immunity, I also came down with a horrible case of shingles. So it’s not always just the treatment that causes the problems, but it’s all of the UTI and other infections that I’ve been dealing with that have wore me down.
And to top it all off I’ve had to have nephrostomy tubes put in to drain my kidneys because I have a large tumour that is blocking off my bladder from functioning properly. So those tubes are just a magnet for infection, and for me to travel somewhere for treatment is going to be pretty dicey.
Hello,
I am sorry to hear about your medical troubles. I urge you however to discuss the use of Lutetium with your medical oncologist. For some men, the results are nothing short of miraculous. One oncologist told me that they have amazing results with 1/3 of the men taking it, so-so results with another third, and it doesn't work at all with the final third. Lutetium is certainly not the magic bullet. That has yet to be discovered, but the side effects are tolerable. In my case non-existent. Lutetium is in widespread use in Europe, Australia, South Africa, India and elsewhere. North America seems to be playing catch-up with this drug. See what is available at the Cross Cancer Institute in Edmonton. You have nothing to lose. Good luck!
Hi glad the trail is going good for you. Do you have to live nearby where they have the trials at the B.C cancer centre? If you dont do they cover any costs in regards to this with trials? Seems like everyone in their trials all can't live right there , so I'm curious what people do while on trials?
Hello,
It depends on your definition of "nearby". I live about 110 kms (65 miles) east of the Cancer Agency in Vancouver. I do have a couple of advantages. One: Our daughter's family live in Vancouver so for early morning appointments we often stay overnight. This avoids the morning traffic on the freeway which can be brutal. I call the freeway the "world's longest parking lot"! 😄 Two: We do have a volunteer Cancer Driver's group where I live so if it is just bloodwork and a meeting with the trial nurse I can catch a ride with a driver into Vancouver. As for being reimbursed, I don't charge for gas or mileage. Occasionally, we stay in a nearby hotel and then we charge the trial's sponsor for meals and accommodation. They eventually pay but it does take several months to get reimbursed. Hope that helps!
Hi, thanks for the reply , we live in the Yukon and I'm worried my husband if the day ever comes will not be in any trials as there are none here . We would have to go to Vancouver.
Hello,
If that day does come and I hope you and your husband don't have to deal with it for a while, here are a few things that are worth considering. There is no direct cost to you for participating in a clinical trial. As for accommodation, many hotels offer reduced rates for Cancer Agency patients. The trial sponsor (in my case Point BioPharma) will assist with airfare, accommodation, and meals. Other options are to rent your house in the Yukon and rent a place in Vancouver. The Cancer Agency will assist you finding low cost rental accommodation. Another idea is to do a home swap. You would be amazed at how many people (e.g. recently retired seniors) would trade their house or condo in the Vancouver area for a chance to live in the Yukon and see Dawson City or the Northern Lights. Good Luck!
I’m currently in the control arm of this study in NYC (since 4/23). It’s very frustrating and causes me a great deal of stress. May I ask why you were allowed to cross over? Thanks.
Hello,
The SPLASH trial does allow for patients to crossover to Arm A. My PSA was going up and scans revealed a lesion on one of my lymph nodes. What drug(s) are you taking under Arm B (Standard of Care)?
Degarelix and Abiraterone + pred
Hello,
I was told that the normal practice in Canada is that whatever Tier 2 or ARPI Drug you were on prior to enrolling in the trial they would switch you to the opposite one. In my case, I had been on Xtandi (enzalutamide) for the previous six years but when I started SPLASH the clinical trial team decided to switch me to Zytiga (abiraterone) plus Prednisone. For reasons that are not totally clear to me, my PSA went down for sixteen months before starting to rise again. That's when the trial doctor allowed me to crossover to Lutetium. BTW, I took Firmagon (degarelix) for a year but I didn't like the monthly injections nor the injection site reaction. I was also finding it hard to make monthly appointments with my family doctor to administer the drug so I switched back to Zoladex (goserelin acetate). One injection every three months. Makes me chuckle but Firmagon is an interesting name to give a drug that causes castration and prevents erections! 😊 Good luck!
Thanks for all the info - and good luck to you, too.
Jim
I live in the greater Vancouver BC area .
I am starting a clinical trial with Lu177 tomorrow and
will be receiving between 5 and 7 injections with a 56 day lag between each injection.
I will document the process and post any side effects or results as they come up
My PSA is currently 9.21 and has been doubling every 10 weeks
I was referred to the BC cancer in Vancouver and just had my appointment on the 25th. They told me that all the trials for Lu177 were finished. I am failing chemotherapy and was hoping to get Lu 177.
my husband is Canadian and enrolled in clinical trial Grand Rapids Michigan for Lu 177
Steroids and Radium 223
Radium 223
Radium 223
