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Hi fellow advanced members

Appreciate if anyone can assist with advice re this topic.

I am 72 yo with advanced metatstis bones only.Over the past 7 years have had a radical, Radiation- 36 treatments, Chemotherapy - Doxetaxel, Enzuletimide and the whole time on Lucrine.

Yep pretty well tried them all and with a rising PSA, now 47- still low compared to some I am faced with more Chemo -Cabazataxel.

I have the opportunity to join the 177 LuPSMA pilot study ( 30 in Australia - no placebo) and will start tests next week to see suitability?

Is there any member who is doing this trial or knows anything about it?

One side affect ( generally well tolerated) is dry saliva and tear glands which I would like to know about?

Any comments most welcome.

cheers 

Roger

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tonymax

Sorry Roger no experience or knowledge on this one.

Best of luck.

 

Regards         Tony Maxwell

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Admin

Roger

Member Barree has posted on this site that he is in this trial:

If you hover your mouse over his picture, then click on 'Message' you will be able to contact him directly.

Reply to this message if you need help.

Jim

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Barree

Hi Roger,

I am on the Lutetium trial at peter Mac / VCCC .I have just had my last infusion of Lutetium177.

I have travelled a very similar treatment path to you and I am more than prepared to share my experiences regarding Lutetium treatment with you.

In essence if you can get on the trial, grab the opportunity - the side effects are as you have been made aware, generally well tolerated.

If you email  your phone number to me,  I will give you a call.

 

Cheers

Barree:)

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Barree

At the start of the trial in February 2016 my PSA level was 86.5, a week ago my PSA level had dropped to 26.3

Prior to the trial - scans showed I had a lot of bony metastases. Comparison of the gamma scans taken after each of the three prior Lutetium177 infusions showed  the bony metastases and tumors are progressively shrinking.

 

An accurate determination of just how effective the treatment has been will be carried out in approximately 10 weeks time using a variety of sophisticated Pet Scans. I will post the results.

 

During the course of the trial I found that my eyes, not unexpectedly became quite dry but eye drops have solved this problem.

 

Unlike many others on the trial, I developed quite a sore throat. It has recently been established that this is an oral Thrush infection. I developed a similar problem when on Enzalutamide.

It is not an uncommon problem when being treated with Cancer drugs,(as the immune system is compromised) but this can be treated with an over-the-counter pharmacy line.

Not unlike most other treatments for Prostate Cancer there are some side-effects caused by the treatment but nothing of a major nature.

I am in touch with some others on the trial and from what they have said,my experience (with the exception of the continuous sore throat ) seems to be reasonably representative.

 

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Brian Lawrenson

Barree and others. I had the first LuPSMA treatment 5/5. It went well. I'm due for the next one on or about 30/6. I have experienced dry mouth but keep a glass of water nearby and its OK. I had the treatment done at Macquarie Imaging in Sydney. DR Lenzo from Perth is setting up a clinic in Sydney. The treatment is quite expensive at $9,600 a treatment. I was wondering what the Melbourne treatments cost?

It seems that I will have to wait 4-6 weeks after the treatment before blood tests. My last PSA was 7.9.

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Barree

Hi Brian,

It’s gratifying to learn that your first LuPSMA went well. The dry mouth syndrome is something that statistically impacts to a varying degree on 20 - 40 % of patients.

 It might, I expect be related to - the dose rate of Lu177 - the tumor burden and I suspect the amount of PSMA available to take up the circulating Lutetium.

If there is an excess of Lu177 floating around the body that has not been taken up by the PSMA, the excess if any may well finish up being deposited within the salivary glands. (Pure supposition on my part but is an influencing factor as to what I will do futuristically.)

Severe cases of dry mouth can lead to increased levels of tooth decay and thrush.

I had a swab taken of my throat to see if my dry mouth and sore throat was due to thrush, but the result was negative.

I still have both mouth and throat issues, but not as bad as when I was on treatment.

The best I could come up with for the dry throat, was cold Soda Water, which I still keep sipping throughout the night.

The situation in Melbourne:- is to the best of my knowledge as follows. All treatment to date has been given without charge as part of a Peter Mac trial. Lutetium is not as yet commercially available in Melbourne.

The trial I was on was a Phase 1-2 trial. It has finished. However, I understand a further 20 or so patients will be recruited in the next few months for an extension of the above mentioned trial.

It is unusual that a treatment goes from phase 2 to commercial without firstly going to phase 3 - but on the other hand Lutetium has been used for many years for treating neuroendocrine tumors.

Brian, you mention that the protocol for your treatment is for 5 Infusions. The trial in Melbourne was limited to 4 infusions and not everyone on the trial needed all 4 infusions.

I understand the doctor you are attending is from the company called Theronostics in WA. They have to my knowledge been treating patients on a commercial basis now for at least 12 months, so they do have experience administering Lutetium177.

 I am just at little surprised that it has been predetermined that you will require five infusions at nearly $9600.00.per infusion. Presumably they will treat and assess prior to each infusion and stop if you don’t need all 5.

I assume you are aware that Associate Professor Louise Emmett, a nuclear medicine specialist has been conducting trials at Sydney's St Vincent's Public Hospital. I am not sure on what basis her trials are being carried out (or if she is still recruiting) but it might be worth your while enquiring. However, as you know, doctors do have their own code of ethics and it may not be possible to make a change midstream.

Good luck with your ongoing treatment Brian.

Don’t hesitate to give me a call if you need any further info.

Cheers;)

 

 

 

 

 

 

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Paul Edwards

I am a participant in the Lutetium PSMA clinical trial at Peter Mac.  I have had 4 treatments. The main side effect has been the dry mouth and some queasiness in the stomach. The side effects are minor compared with the side effects that I had with chemotherapy.

 

I have had mixed results with the treatment.  Some tumours have shrunk but new tumours have appeared. My PSA has been fairly stable - I have  not had the large drops in PSA that many participants have experienced . The treatment has certainly slowed the progression of my disease.

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Brian Lawrenson

Baree and others. The 5/5 in my previous post was 5th May. I am hopeful that I will only need 2 treatments. They do a blood test about week three after each treatment which for me will be next Friday. Also at the end of week 4 of the second trail they will do another colour PET PSMA  scan.This will really be the critical factor in determining whether I need further treatment. As my cancer had spread to the bones, I might have to switch to a Radium infusion.

The PET scan for me is dangerous as I have had one kidney fail and the other restricted by the cancer spread. This has now partly been reversed but it is a complication that others might have experienced. Diet is vital in this situation. I don't eat red meat, milk products, sugar, processed meats or white bread or pasta. I've reduced my carbohydrate intake and mainly eat plant or vegetable meals plus fish and chicken. In German many of the clinics keep patients in hospital for 5 days. Does anyone know why other than the obvious case of radiation?

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