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Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)

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@kjstein

Yes, I was able to tolerate PRRT well. The treatments went exactly as they were explained and my major side effect was fatigue--really fatigued after the first treatment and less so with each of the remaining 3. For me the fatigue was most noticeable the first few days after treatment and lingered for about 2 weeks when I started to get some energy back! No nausea either during or after treatments--but I did notice that there were certain foods that I really craved and others that I just did not want to eat. I also did experience thinning hair (which I think may be unusual) but I did not lose all my hair! By the end of the 4th and final treatment, I did have mild anemia--but blood levels stayed within low end of normal limits throughout treatment. It is taking some time to build my strength back up, but I'm back to normal levels of exercise and feeling well now (about 4 months after last treatment). The protocols for after receiving the treatment are pretty strict (distance from other people and your pets for several days, laundry and bathroom protocols, etc.) but overall this treatment was not as scary as it sounds! Happy to share more if anyone else is thinking about this as a treatment. Just at the start of the journey, so will see how it goes from here!

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Replies to "Yes, I was able to tolerate PRRT well. The treatments went exactly as they were explained..."

Hi again @kjstein

I appreciate you sharing your personal experience with PRRT as well as the good results. You might also find the Connect discussion group on PRRT interesting. Here is the link that will take you to that discussion, https://connect.mayoclinic.org/discussion/prrt-treatment/

As it would be good for prospective patients to have some first-hand knowledge, can I invite you to discussions with others who might be considering PRRT?