Any experience with LU-117

Hi Mel - I responded on the other group.  You might not find many on here with PRRT experience but I will try to find you some in my own forum site and try to connect with you.  I know several and some from USA. 

try this for starters www.prrtinfo.org/patient-stories

Hi I have just received my 3rd cycle of lu 177 PRRT treatment for a insulinoma with liver and lymph node metasisis. I was so scared for the 1st cycle think it was the unexpected but I sailed through it with a little nausea and tiredness but nothing major. The 2nd cycle I had a reaction high temperature, felt unwell and spent 3 days in hospital on antibiotics, the consultant thought it was a reaction where the radiation had hit one of the tumours on my liver and it realeased some chemicals into my blood stream which caused me to feel unwell and my liver function decreased a bit.I have had a bit of hair loss with the treatment but not lost all my hair but it has certainly thinned a lot and I have a few patches where I can see my scalp which I never had before. The 3rd treatment was pretty much like the 1st no major side effects and a week on I'm feeling really well and am hoping to get back to the swimming pool next week and try a swim. You are given anti sickness medication when you have the treatment and I took them every day for 5-7 days after the treatment as I really struggled with feeling sick the 2nd time round. The treatment is given 8-12 weeks apart and it is given in a day at my local hospital, you go in at 8am and leave by 4.30 time, you have scans after treatment on the day and the following week to check where all the radiation has gone. I couldn't manage my symptons of my cancer before the treatment with my blood sugar falling all the time but after one treatment my blood sugar was stabilised and I can do lots more than I have been able to do for a long time. I had a scan after the 2nd cycle and all the tumours on the liver had responded to the treatment and shrunk a bit which was very promising. Hope this helps you and good luck x. 

good luck with the rest of your treatment.  I've not had it and don't need it yet but hoping it will be on routine availability soon ready if I ever do.

thanks

Thank you, it was a big struggle getting the funding in place for the treatment but fortunately it was put in place in the end and I was fortunate enough to start on this treatment. I do hope they reinstate it on the cancer drug fund.do you know when the new list is released?it has been a life saver for me and has kept my insulinoma symptons at bay, so I can enjoy a good quality of life for the time being. X 

Fingers crossed for a decision by end of this year 

Thank you so much for your posts. I saw this just now and I am sooo delighted.

My husband was diagnosed with prostate cancer in 2003, has been on hormone treatment for many years now and is currently on Aberaterone which seems to lose effect slowly - as they say it does after two to three years. So we are now looking at other treatment options as the PSA is slowly starting ro raise. One of the options we are exploring is LU177. It is used in 12 nuclear medicine centres in Germany and we have contacted two of them to see how the treatment could be done and how much it would cost. We have heard back from one of the clinics - the one in Munich, Germany - and are waiting to hear back from Bad Berka - a hospital in the east of Germany close to the border with Poland. Unfortunately, they are very slow with their response, which is very annoying as we have postponed our appointment with the oncologist here in Dublin already twice as we feel there is no point in going back without any information from Germany.

If my husband can't avail of that treatment option, the only other option available at the moment seems to be Chemotherapy.

So we are very, very grateful to hear from anyone who has been on LU177. I also apologise, by the way, for my mistake in my original posting where I called this therapy Lu117 instead of LU177.

So please keep updating us.

It sounds like the treatment is not too bad and the results seem to be very good too.

Thank you again!

Hi

I am in a very similar situation as your husband although just about to start aberaterone, so I am researching to be a step ahead on the next stage and options available.

Have you made any progress since your last posting? If so can you advise on any clinics that you have made progress with. 

If you are still looking for some information please visit this site https://nuclearmedicinetherapy.in/treatments/prrt