PRRT side effects and results

Thank you I did LACNETS a few weeks ago they were all a wealth of knowledge I will continue
I hope that my liver tumors shrink as well
In December I will have 5 years behind me
The last few have been a struggle
Thank you for your support and best wishes

Hi gesmone1
As we all have different responses and I feel like a test subject, I am happy for you that you had success with the PRRT. Unfortunately, for me, my tumours grew 1 cm. per month, so I had to stop it after 2 sessions. I had Histotripsy and so far that is working for me.
Good luck to all of us!

Apparently I was 3rd in the world to have 5 tumours done at once for this remarkable treatment (Histotripsy). I painted a jacket as a reminder. The Swedish Hospital group in Seattle stated I was making history. Ironically, it came as the non-astronauts stepped out. I call this jacket my 'Staying Alive' jacket with the Travolta stance.

Great that this treatment is working for you.
We are all on a journey that only God knows all that we will encounter. I take everyday as a blessing. So many of my friends have already lost the battle with cancer. I will soon hit the two year mark. I Thank God for every day.

This is the first case of someone using this method I have seen on this Forum. Our team said it was too soon to consider it, as there wasn’t enough time since it was approved to consider it. So I’m curious if you were able to get insurance to approve it, and please keep us updated on your progress. I’m also wondering if you still have any tumors left on your liver?

Hi Kim
I posted about Histrotripsy a while ago, but more info comes out every day. Look it up for more info. Right now, they have it at 95% success on liver tumors, but hopefully their progress will include other organs. It was approved early this year by the FDA and it's quite remarkable. My Oncology team also had not heard of it (I am in Canada), but they are working with my Seattle group now and very excited. It is extremely costly and hopefully your insurance will cover it. . Re: my multiple tumors, the non-invasive procedure shrunk some and they are waiting to see the 'Abscopal' effect. There is also something newer (not out yet) that does a similar non-invasive, trying to educate one's immune system to recognize and destroy cancer. I had the procedure in mid May and am waiting to hear the results after this 3rd CT scan. It takes awhile for my system to eradicate the remainder. I was told that I might have to go back for a cleanup of any remaining. This is my experience and I hope that others can benefit.

Please keep us updated, this could be a great tool for some cases of NET going forward if your teams agree it fits their case.

Hope all are doing well!
I did my 4th PRRT treatment on 10/9
This time when they were injecting the radiation it was burning they stopped and drew back on the needle said all was flowing ok they continued and it still burned
The next day my arm and hand were swollen and painful radiation doctor told me to ice it
I have been icing and still swollen and painful
Anyone else have this happen and if so what did you do to help the situation
Thank you as always for everyones support
Remain hopeful for all of us

@gesmone1: I’m glad you tuned in to LACNETS zoom group. It has been so helpful both with peer experiences and expert NET specialists who answer our unending questions. We are all different in our NET journey, but it is very reassuring to know others will give us info and guidance when our disease has progressed and we want best treatment options. Lisa and Heather have access to many experts and will be your advocate too! Be your best every day. 🙂

@gismole1: how has your histotripsy treatment been - both in side effects and scan results?
Please share which facility you are using and Dr name. Did you receive warnings prior to procedure? I am trying to evaluate if Histropsy could be best solution for liver tumor.
You can private message me if you prefer. Thank you!