I am one year out with my diagnosis just finished 4th round of PRRT

I am about the same one year out from diagnosis with absolutely no treatment from the last 5 months. This is not because I’m in remission, but because 8 months of lanreotide injections, 3 months of Temozolomide, and a bland embolization none of which provided the results hoped for. I am now scheduled for a mapping for Y90 and my anxiety is off the charts. I asked my IR doctor what the next step would be if this, too, did not work. She said we would cross that bridge when we got to it. Just know you are not alone and we zebras all have to hold each other up. My Mother would have told me “this, too, shall pass” and I know it will.

I pray that you find the strength until you get the right treatment and that your treatment will come soon for you. This too shall pass, my mom always said “where there is faith there is hope” and I can hear her words often….

Are you getting monthly injections? I started with Lanreotide, that didn’t help the flushing, I was going through flushing 20 - 25 times a day.. Switched to ocreotide, and the flushing has stopped.. I am also scheduled for my 2 nd PRRT Treatment this month… I fully understand the emotional roller coaster..

Absolutely, @nana120!
I hear my oncologist saying the same - " we will cross that bridge when we get to it"
Hugs!

Be positive about the the y90 I had it after 7 months of captem that didn’t work and it is still working over 2 years later! It has a high success rate

As I said there have no treatments for the past 5 months. I did have Lanreotide for 8 months. Although I was not having flushing, it did not stop growth of the liver tumor.

@nevinrbaskin, cancer, treatment and even sharing experiences with fellow cancer patients, can be a real emotional rollercoaster. Anxiety about the future is natural, whether the future means what is today going to bring - side effects, energy levels, etc? Or reframing the future considering this health curve ball thrown your way.

@nevinrbaskin, do you have anyone you can talk to openly and frankly about the fears, anxiety and uncertainties? Have you considered talking to an oncology social worker? How are you doing today?

Hi I am in touch with my oncologist nurse. Thank you for reaching out. I am doing well. I have been using practicing music and meditation to help me with anxiety. I also train martial arts and that also helps me stay grounded. The first two weeks after my last prrt treatment was difficult but has leveled off and I feel much better.

I am sorry you have had such a hard year. I have a question. After your resection did you have any mestastitis? Or was the resection for just the one tumor? What grade was your tumor? The reason I am asking is your symtpoms sound like you had carcinoid/functional NET tumor. And your symptoms continued after the tumor was removed?

I have Grade 1 stage 4 stage NET. The primary tumor was resected which was in the small intestines. I also have a tumor in the mesentery area which is pressing on the mesentery vein and artery, multiple lesions in the liver, subclavian lymph node and a small spot on my acetabulum. The Doatate PET scan with copper which Dr Wolin ordered at MT Sinai was much clearer than the one I got locally with gallium.
My last PRRT was 1/3 and I have a Doatate PET scan with copper scheduled in April and will have a follow up visit 4/28 with Dr Wolin. I am praying the PRRT shrunk all the tumors.