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Lutetium 177 for "early" grade 4 pc or amino acid suppression ?

Wishyouwerehere profile image
4 Replies

Dear All,It's a story of two brothers in the uk.

Older brother was identified with 4+5 pc. His urologist recommended that any sibling be tested for pc. I did so and it was discovered that I had 3+4 pc.

Older brother , via our national health care system, NHS, has systemic treatment ( chemo and hormone) since surgery seemed to not be an option. However later on they agreed to remove the very large prostate by RALP. PC had spread to lymph nodes. PC on outer capsule of prostate. So they also removed the lymph nodes they could while undertaking RALP. They suggested that maybe he would have a year with very low levels of PSA. 9 months down the line his PSA levels have gone up to 1. So further scans of various types to identify where these other affected lymph nodes are. Suggestion is that some of the affected lymph nodes could be treated with radiation but a few of the lymph nodes they would not be able to get at.

For what ever reason my brother's view is that he would rather look for alternative treatment than to have, what he calls a half life on chemo.

He is exploring treatment using Lutetium 177 but most of the medical papers that we look at relate to fairly well progressed grade 4 cancer rather than "early" grade 4 cancer.

Just wondering if there have been members of the forum who have had Lutetium 177 treatment for "early " grade 4 cancer and if so has it been successful? Or are there any medical papers that show effectiveness of using Lutetium 177 at this stage?

In terms of Lutetium 177 then our NHS does not have this on their list of approved medicines but rather on their list of novel medicines and hence there have been some trials but nothing to promote it to the stage of being approved.

I did see an old post (5 months ago) where Lutetium 177 was mentioned but it seems as if the replies are not clicking through with posted information.

The other emerging thought is amino acid suppression. Again is this something that members of the forum might have experienced and if so was it successful?

I am the lucky brother in that I have had a Retzius-sparing RALP and that seems to have been good. Whereas my older brother has not been so lucky. I feel that I have dodged a bullet only for my brother to cop.

Sorry for such a long post.

I know in the past when I posted stuff the community has been very supportive and the collective knowledge of members is a power in itself. Obviously this information about my brother is second hand and he holds all the finer detail so I have attempted to give you the story as its been supplied to me. So I will struggle to answer any questions unless I persuade my brother to directly supply the forum.

Any light that you can shine will, as always, be greatly appreciated

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4 Replies
NotDFL profile image
NotDFL

I doubt that your system will 'pay' for Lu therapy, or is your brother willing to fund this himself or travel to Germany? As you may know, Germany has been a trail blazer of this kind of therapy. Perhaps you can get advice from one of their health facilities.

Wishyouwerehere profile image
Wishyouwerehere in reply to NotDFL

Dear NotDFL,Thanks for the reply. Much appreciated.

Yes Germany seem to be the ones who have been using Lu177. I did try to search for medical papers from German sources since I was hoping that with their strong use of it then they would have written lots about it. But I struggle to see that type of material flowing out of Germany.

Yes it is a strong possibility that this is where he will be heading off to pay for his treatment.

However he has been given an appointment to talk to Doctors at the UK Royal Marsden hospital (uk Centre of excellence for cancer) since it seems that there may be some trials, but like many trials I just wonder if it's good to get plugged into some researchers project rather than get in front of an expert who can tailor treatment to your specific needs.

Thanks again for your help.

Tall_Allen profile image
Tall_Allen

It's in clinical trials for early use. He can get it in Germany or India.

Wishyouwerehere profile image
Wishyouwerehere in reply to Tall_Allen

Dear Tall Allen Thanks for taking the time to read through my unashamed ramblings.

As you say it seems to very much being considered within trials.

Germany, as you know, is not that far away from the UK , so it seems that is where he would go to for Lu177 treatment.

I just thought I would try and explore the collective thoughts of the group since there appears to be members who have very extensive knowledge on lots of pc issues and if others have gone through the same loop then it would be a real insight.

Thanks again for your help.

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