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Any one with Neuroendocrine tumors getting the shot once a month?
Neuroendocrine Tumors (NETs) | Last Active: 1 hour ago | Replies (268)Comment receiving replies
@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
Replies to "@hopeful33250 , Thank you for the reply. I have seen a net specialist at moffitt cancer..."
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?
@sturns
My husband finished PRRT and had very good results. It may be worth considering because if effective it would indeed address the tumors that may be contributing to your pain. Additionally, see if palliative care or pain management would consider fentanyl patches, they can provide consistent pain relief, and you might find starting at a lower dose than the hospice pain management you had been on.
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@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