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Lu-177-PSMA therapy

User
Posted 04 Jul 2019 at 16:39

I am very new to this type of conversation, but I think it might be helpful to others to hear of my experience with prostate cancer.

I am the first patient to have been treated with Lu-177-PSMA therapy in the UK.

It is provided by GenesisCare in Windsor. They call it Theranostics

Having been diagnosed in 2012 at the age of 71 with metastatic disease in the bones. Since then I have been going through the prescribed path of treatment, first Hormonal by my Urologist which lasted for about two years. Since PSA levels started rising I was referred to an Oncologist which put me on a course of Enzalutamide which was also successful for about two years. When PSA levels increased again chemotherapy was recommended. I was given nine cycles of docetaxel which made me quite ill, loosing hair and taste. Blood tests three month later already showed an increase of PSA by 8%, three month after that PSA levels accumulated rapidly.

Having been a good responder with all the previous treatments, I expected to have more than six month respite. This left me very depressed.

My Oncologist told me then about Lu-177-PSMA treatment and recommended it as an option. At that time it was only available in Germany, Norway and Australia. It was also muted that this treatment might become available in the near future in the UK.

At this time I started researching and looked at some forums to find out what and where Lu-177-PSMA treatments were available. Having contacted some clinics in Germany, I soon came to the conclusion that these treatments were manly geared for Health Tourism.

In the meantime, from November 2018 I was treated with further chemotherapy with cabazitaxel. After four cycles this was stopped in February of this year, as choline pet scans showed new tumours developing.

My Oncologist then informed me that the Theranostics treatment would soon be available and referred me to Dr. Yong Du at GenesisCare in Windsor. There I had a PSMA pet/ct scan that showed up disease, which meant that I could have the treatment. At the end of May this year I was the first patient to undergo this treatment in the UK. About four cycles are recommended and I am looking forward to my second cycle in a few weeks. I suffer from no side effect whatsoever, and apart from being radioactive for a week, I would not even know that I am having any treatment.

The treatment takes about 3 hours consisting of being infused with Lu177, it is painless and one can go home straight after. Not only is this treatment fast and simple and one does not have the additional cost of going abroad and having to stay in hospital for the treatment.

I thought it helpful to spread the good news to other sufferers who are at the last stages of this disease. Whilst it is still not a cure but palliative and hopefully will give patients long respite and quality of life. Great advances are being made in the treatment of Prostate Cancer and this is surely great NEWS.

Please use the link and look at the video.

GOOD LUCK

https://www.genesiscare.com/uk/treatment/cancer/theranostics

 

 

 

 

User
Posted 04 Jul 2019 at 16:39

I am very new to this type of conversation, but I think it might be helpful to others to hear of my experience with prostate cancer.

I am the first patient to have been treated with Lu-177-PSMA therapy in the UK.

It is provided by GenesisCare in Windsor. They call it Theranostics

Having been diagnosed in 2012 at the age of 71 with metastatic disease in the bones. Since then I have been going through the prescribed path of treatment, first Hormonal by my Urologist which lasted for about two years. Since PSA levels started rising I was referred to an Oncologist which put me on a course of Enzalutamide which was also successful for about two years. When PSA levels increased again chemotherapy was recommended. I was given nine cycles of docetaxel which made me quite ill, loosing hair and taste. Blood tests three month later already showed an increase of PSA by 8%, three month after that PSA levels accumulated rapidly.

Having been a good responder with all the previous treatments, I expected to have more than six month respite. This left me very depressed.

My Oncologist told me then about Lu-177-PSMA treatment and recommended it as an option. At that time it was only available in Germany, Norway and Australia. It was also muted that this treatment might become available in the near future in the UK.

At this time I started researching and looked at some forums to find out what and where Lu-177-PSMA treatments were available. Having contacted some clinics in Germany, I soon came to the conclusion that these treatments were manly geared for Health Tourism.

In the meantime, from November 2018 I was treated with further chemotherapy with cabazitaxel. After four cycles this was stopped in February of this year, as choline pet scans showed new tumours developing.

My Oncologist then informed me that the Theranostics treatment would soon be available and referred me to Dr. Yong Du at GenesisCare in Windsor. There I had a PSMA pet/ct scan that showed up disease, which meant that I could have the treatment. At the end of May this year I was the first patient to undergo this treatment in the UK. About four cycles are recommended and I am looking forward to my second cycle in a few weeks. I suffer from no side effect whatsoever, and apart from being radioactive for a week, I would not even know that I am having any treatment.

The treatment takes about 3 hours consisting of being infused with Lu177, it is painless and one can go home straight after. Not only is this treatment fast and simple and one does not have the additional cost of going abroad and having to stay in hospital for the treatment.

I thought it helpful to spread the good news to other sufferers who are at the last stages of this disease. Whilst it is still not a cure but palliative and hopefully will give patients long respite and quality of life. Great advances are being made in the treatment of Prostate Cancer and this is surely great NEWS.

Please use the link and look at the video.

GOOD LUCK

https://www.genesiscare.com/uk/treatment/cancer/theranostics

 

 

 

 

User
Posted 04 Jul 2019 at 19:25

Thanks Pregonero, I wish you the best with treatment. I've heard of some great results 

User
Posted 04 Jul 2019 at 20:03

Amazing and thanks, I’ll let my husband know about this as we are running out of treatments too.

good luck

Devonmaid

User
Posted 04 Jul 2019 at 22:33

Thank you for the information. I have been researching this line of treatment for some time and it is promising that it is now in the uk. I hope one day it will be available to all that will benefit, taking over from the the outdated chemotherapy with a more targeted approach. Please keep us updated as I am sure it will be of interest to many people on the forum.

All the best

Roy

User
Posted 16 Jul 2019 at 21:20

Gemma1234, I think that in this trial, two out of three get the Lu177 treatment, not 50%

User
Posted 16 Jul 2019 at 21:49
I was replying to Gemma1234’s post of July 5th which was about the Vision trial, running in several centres in the UK.
User
Posted 16 Jul 2019 at 22:57

Hi Hans

thanks for the update. The cancer may be giving out more PSA as it dies. The best indicator will be the PSMA scans in a few weeks. It is good that you're not suffering side effects from the treatment, so fingers crossed. Keep us posted.

All the best

Roy

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User
Posted 04 Jul 2019 at 19:25

Thanks Pregonero, I wish you the best with treatment. I've heard of some great results 

User
Posted 04 Jul 2019 at 20:03

Amazing and thanks, I’ll let my husband know about this as we are running out of treatments too.

good luck

Devonmaid

User
Posted 04 Jul 2019 at 22:33

Thank you for the information. I have been researching this line of treatment for some time and it is promising that it is now in the uk. I hope one day it will be available to all that will benefit, taking over from the the outdated chemotherapy with a more targeted approach. Please keep us updated as I am sure it will be of interest to many people on the forum.

All the best

Roy

User
Posted 05 Jul 2019 at 14:55

Thank you Roy

I too hope that this treatment will become available to all and will replace the dreadful chemotherapy.

I am having my second treatment next week and will report how I am getting.

All the best

Pregonero

User
Posted 05 Jul 2019 at 19:27

Hi,

Are you paying for this privately?

Best regards

User
Posted 05 Jul 2019 at 19:55

Hi Orm123, 

I know it's available as a phrase 3 trial in Bristol too but it's 50/50 if you receive it or soc 

Our oncologist mentioned they have people coming from all over the UK 

User
Posted 06 Jul 2019 at 14:45

Hi, so far my private medical insurance paid for all my treatments. I understand that part of the Theranostics treatment will also be covered.

User
Posted 16 Jul 2019 at 15:57

Further to my post regarding Lu177 PSMA therapy, I had my second cycle last Saturday. I was somewhat disappointed and worried as my PSA stayed the same for two blood tests after my first cycle. However, the third blood test showed a reduction.

I have just received my blood results taken at the day of treatment last Saturday and I am concerned since it showed an increase from the blood test taken two weeks prior. However I have been told that PSA goes up and down during PSMA therapy.

I feel absolutely fine and have no side effects whatsoever. I am having a PSMA scan in five weeks time prior to my third cycle.

Hoping that the scan shows positive results, I will keep everyone posted.

 

User
Posted 16 Jul 2019 at 17:56
Good news on the reduction in PSA and the lack of side effects 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2019 at 21:20

Gemma1234, I think that in this trial, two out of three get the Lu177 treatment, not 50%

User
Posted 16 Jul 2019 at 21:34

What makes you think that!

This is not a trial anyone who is responsive to PSMA Scan can have the treatment.

User
Posted 16 Jul 2019 at 21:49
I was replying to Gemma1234’s post of July 5th which was about the Vision trial, running in several centres in the UK.
User
Posted 16 Jul 2019 at 22:57

Hi Hans

thanks for the update. The cancer may be giving out more PSA as it dies. The best indicator will be the PSMA scans in a few weeks. It is good that you're not suffering side effects from the treatment, so fingers crossed. Keep us posted.

All the best

Roy

 
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