I was wrong, you are correct Lyn one can have + and -
This paper gives figures 54% of tumours are completely positive. (I think 10%) are completely negative, with 36% being a mix of positive and negative.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7255040/
I think the paper then goes on to say the percent of PSMA positive metastasis follow the percentage of the primary tumour.
Chris, you should take the following figures with a big pinch of salt:
We know you are not in the 10% of totally PSMA negative, so there is a (54/90=) 60% that all your mets will be detected by PSMA and be susceptible to Lu177 delivered to PSMA. The other 40% is a sliding scale at one end 99% of your mets will be detectable (and if you only have 10 mets that probably means all of them) at the other end of the scale only 1% of your mets would be detectable.
Given all the above I would say you have about an 80% chance of PSMA being useful either for scanning or treatment delivery.
Of course as I like to point out I'm a random guy on the internet with a pocket calculator, not a medic. Discuss treatment with a professional.
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Hi Chris,
I have followed you from my early days on the site. I wish you well with your continuing fight good luck mate.
John,
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John , thanks for the reply.
Dave , thanks for the update. I just cannot read, digest and understand medical research as detailed in the link , I just skip to the conclusion and hope it makes sense. My hospital uses the F18 1007 tracer does that make any difference.
Is it a real pocket calculator or an app on a phone π.
Thanks Chris
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Actually I do it all in my head, which gives less reason to trust my opinions.
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Sorry to read this Chris, I feel gutted for you. I hope you find a way forward soon.
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Ido , I had a very informative conversation with my oncology nurse yesterday. I know the nurses have alot more time than the consultants but without having to ask she ran through alot of information my consultant didn't want to answer.
I have a private sector meeting with my NHS consultant next week to discuss options that the NHS may not offer.
Thanks Chris
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Hi Chris
The Docrates Hospital in Helsinki do private Lu-177 even if hormone sensitive ( if they consider it appropriate) However I think it’s out of pocket expensed only
Good luck
Originally Posted by: Online Community MemberClaret, just looked at some Germany and India sites, I will have to look into what my health insurance covers. They all seem to have the requirement that you are castrate resistant and I don't know that. As Lynn mentioned there is a shortage of the 177 and I wonder what the travel insurance would work out at.
Lynn, thanks for the info , I didn't pick up on the - sign. An early scan makes sense to me, even if I delay treatment until after a further scan.It is the sudden rapid PSA rise that is confusing, unless it is death cry of the cells. I did notice the PSA of Mr fish had a rapid rise after treatment.
Jellies, I don't think the full pelvic treatment was considered when I had salvage RT. In hindsight perhaps the addition of HT with SRT would have been beneficial.
JayneP, thanks.
Thanks Chris
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I think the international supply issue will be affecting Helsinki - not sure how long it might take the company to build two new production centres? Also worrying that both production centres are to be built in the USA as apparently the Lutetium must reach the hospital or clinic within 5 days of being made.
It seems Lu177 is not a realistic option for men with PCa at the moment
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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It’s always worth checking if they have supply as they may source from the Spanish production facility.
worth an email for any one considering it. Finland have allowed its use for the hormone sensitive for a few years now so have expertise in the logistics.
quote=LynEyre;279511]
Quote:I think the international supply issue will be affecting Helsinki - not sure how long it might take the company to build two new production centres? Also worrying that both production centres are to be built in the USA as apparently the Lutetium must reach the hospital or clinic within 5 days of being made.
It seems Lu177 is not a realistic option for men with PCa at the moment
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Claret,thanks for the info.I see my oncologist again on Thursday,so will hopefully discuss options.
Thanks Chris
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Chris, just let me tell you st: my husband is coping with HT pretty well. Although he's a professional complainer, he only moans about occasional tiredness and some awakenings along the night. Shouldn't you reconsider going for it, if offered?
Best,
Lola
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Lola, thanks for the reply and your experience it is appreciated. I think all of us would prefer a curative pathway rather than a controlling pathway. I do sway between I am not having HT and I don't want HT. So far in my discussions with the onco I have said I don't want HT, but never point blank refused it.
Seeing him in the next couple of hours.
Thanks Chris
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I'm also expecting some news from Chris. π€
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Sorry guys, pretty much as expected another PSMA scan in a couple of weeks. We have switched to using our medical insurance, the wait for the scan at our hospital is now around 4 months. The scan will be at the genesis centre in Oxford which I believe will be use the gallium 68 tracer. Will keep you updated as and when.
No explanation for why the PSA is rising faster than at an other time other than it sometimes happens. I asked about including the troublesome knee ,but was told that was down to the radiographer. Onco said he had only seen spread to the knee on three occasions, I did say I could be number 4.
Thanks Chris
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Thanks for your update, Chris.
I guess the PSMA will show whatever is causing that PSA rise and and they'll give you a tailored treatment. Thankfully, many are available these days.
Stay calmπ€
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When I had my PSMA PET with the GA infusion, it was "whole body" With extra scanning in the pelvis.
Seems strange your ONCO won't specify an investigation on your knee explicitly. Sometimes I think they focus on "likelihood" and forget about their patients peace on mind!
The infusion will go everywhere regardless, they might as well take the picture while they are there!
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4 months seems a long wait. I was told by my nurse it was much less. Good luck at the Genesis Centre.
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I think it is a local issue with our hospital scanning facility.
I do see there are alot of guys now having PSMA scans at the diagnosis stage, so I assume there is added pressure on the facilities. It does means a 220 mile round trip βΉοΈ.
Thanks Chris
Franci , I agree with the peace of mind bit.
Lola , thanks, I am probably too calm π.
Edited by member 01 Apr 2023 at 10:21
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