Any one with Neuroendocrine tumors getting the shot once a month?

i,ve had pnet for 7 years. tried sanostatin and a couple of others not much treatment. i am thinking about PRRT, what are your thoughts abot that? and the pain i have is off he charts. it wraps aroung the upper abs and over liver which is coverered with small tumors and lesions. the pain also wraps around the back, upper thorassic, even with strnum (sp) , one or the other and will last 2-4 days and its a 9 easy and that with taking pain medication which i hate to take..any suggestions? this is first time reaching out, and i havent had anyone to talk to. just moved to be closer to my sister but i just sit in an apartment and stare. i am at the end of my rope. Anthony

@sturns

Hello Anthony,

We have many members on Connect who have had success with PRRT treatments. Here is a list of discussions about PRRT: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

In these groups, you will meet members such as @vinnie694, @dbamos1945, and @rkklinger, among others.

Are you currently seeing a NET specialist?

@hopeful33250 , Thank you for the reply. I have seen a net specialist at moffitt cancer center and they wanted me to try prrt, i havent yet but am looking into it. I have had pnet for 7 years now and at first it wasnt bad but about a year and a half ago it started to get real bad as far as pain is concerned. i am on a pain regiment yet at times the pain just walks thru it. i was with hospise and am being released because they say i will live more than 6 months....i'm not dying fast enough.... I have to find a pallitive care dr. and no one will write for me so i have to go 3 hours to my old PC dr. I am with the VA and they want to write motrin. I have about 45 tumors in my liver, in my lympnodes that run up my spine on the inside, on the stalk of my kidney and new ones in my lungs. my last scan showed that it is moving and growing and new tumors are showing up. in 2000 i had 2 pitutary adinomas which caused them to take out the p gland then 7 back surgeries ( 6 ,lumbar and 1 cervicle), now this. I don't see much pain assocated with nets in others why is it that i have such debiliating pain?? its just aweful. my oncologist said its the tumors running into nerves. my pain is accross my upper abs, even with sturnum from outside left pec and accross to the right side of right pec and over liver, then it will move to my back even with my abs and the pain goes accross from one side to the other. my sister is pushing the pain pump and the dr. said it wouldn,t cover all the areas, so why change from oral were i,m getting some repreve. i am looking into the PRRT, i see others have done it and some a few times, is it worth it? I don,t know which way to turn. I have to find another pallitive care dr. because hospice has put me on a high dose of opiates and the withdrawls would be aweful. any ideas, i have no one to talk to about this, just suggestions would be nice. thank you for reading my book,lol. but truly i thank you. the net desiese has brought us together and i feel like i can count on those who are going through the same, they understand so any suggestions would be greatly appreated. Anthony

@sturns: If you have diagnosis of Neuroendocrine Tumor Cancer and tests validate that your tumors are Samatostatin receptive PRRT may be helpful in reducing your tumor’s size and even eliminate some - depending on the tumor location & tumor cells’ receptivity. From my experience I have been told the drug Lutathera infusion drug goes to the receptive tumors and destroys the cell nucleus.
I had this treatment 2 yrs ago at City of Hope, had great results that reduced the size/eliminated a few/continues to stabilize my disease. I can’t speak to your pain discomfort, but discuss with your NET specialist Medical Oncologist all concerns. My guess is if your tumors are reduced in size this would have positive effect on your pain discomfort. There are several test results you will need to make the final decision if PRRT would be your best treatment. We NET patients react so differently to our disease.
I hope you will be proactive in being your best advocate and research treatments that may be helpful.
Many of us with NET have experiences to share if you have specific concerns. Best to you!

Thank you very much for that info. good luck to you also my friend. net is not so black and white but i will persue the PRRT and go from there...thanks. Anthony

@sturns November will be 18 months since my PRRT treatments. I've had 3 scans over this time frame, and all 3 have shown continued shrinkage to my tumors.There has been no new Tumors and the small ones are barley visible, larger ones are smaller than when I started this journey. Praying that the scan in November shows the trend continuing. My tumors started in the small intestines and spread to my Liver. I was fortunate with the treatments with little to no side effects.. My best to you on your decision

I'm really sorry to hear of the pain, @sturns. Since your medical oncologist suggested that it might have to do with the "tumors running into nerves," you might consider what can be done to reduce the size of the tumors. As many in our group have found that PRRT has reduced the size of their tumors, it might be a consideration. How much discussion have you had with your oncologist regarding PRRT?

As @dbamos1945 mentioned, we all react differently to treatments; however, PRRT might be worth a try.

I look forward to hearing from you. Will you keep updating our group as you progress towards a decision?

@hopeful33250 Thank you Teresa, thats a big help.. A

I have been on monthly injections of Lanreotide ( off and on) for several years. Little to no side effects. Have found it helps with GI issues- not clear if it has helped reduce tumor size- but has been part of my regimen

@sturns
Bummer on the pain factor. I had PRRT ( 4 rounds-2 months apart) 3 years ago - did not see any noticeable impact on decreasing size or number of tumors. Ended up having surgery and ablation procedures a year later- removing/ ablating 40+ lesions in my liver.
Have been on Affinitor/ Everolimus ( daily chemo pill) for past 6 months- having positive impact- no new tumors, no addl spreading and some modest reduction in size of some tumors. Managing side effects-but fortunate ( and optimistic) about continued treatment
Was initially diagnosed w NETs-11 years ago - started in Colon/ small intestines-spread to liver and bones ( typical) Mayo Oncology team has been amazing - # of different treatments over the years -

Stay positive and strong !