PRRT Treatment: What to expect?

Ron's 1st PRRT was on June 4. He is starting to lose his hair. I haven't seen hair loss as a side effect. Has anyone experienced it? May God bless you all -- this is a tough journey.

Hello @rkklinger

I appreciate you sharing about Ron's PRRT. Perhaps someone else will post about hair loss. I'm wondering if Ron has had any other treatments before he began PRRT. Is hair loss his only side effect so far?

@hopeful33250 In 1995, he had 1 NET removed which was located between the Illieum and Bowel. There was no treatment then. 12/30/23 we learned that his body and skull are full of tumors. Ron has been on Lanriotide for 3 1/2 years with no side effects. In May we learned that his tumors are increasing which qualified him for the PRRT treatment. Our assumption is that the hair loss is due to the radiation. He has lived a very active normal life. Unfortunately now he is also dealing with AFib which has complicated things.

@rkklinger
It sounds like he is dealing with a lot of medical issues now. When did AFib begin?

@hopeful33250
Yes he is dealing with a lot of issues. The AFib is not connected to the cancer. They check his heart yearly to be sure that he hasn't developed Carcinoid Heart. Most likely the AFib was caused by him being totally dehydrated. Tough journey right now! Thanks for asking.

My most frequently occurring was sudden strong fatigue attacks as well as generalized tiredness and some digestive issues. Now that all four infusions are over, I do show an not unexpected drop.in platelets red blood cells

Having just finished my 4th/last PRRT treatment I have found reading these comments therapeutic and encouraging, thank you. Fatigue has been the major side effect and while initially apprehensive I can’t recommend this treatment more highly.

@rhb18 We appreciate your comments as Ron goes for his 2nd PRRT treatment on Augustt 3. So far, the main side effect has been fatigue. We're praying that will continue after the 2nd treatment. We are wondering if you had a PET scan at any point to see if it is working.

@rhb18 I really appreciate you sharing about your experience and your recommendation for PRRT. When will you be having follow-up scans or other tests?

@rkklinger
I'm certainly wishing Ron well as he approaches his 2nd PRRT treatment next month. How long does his fatigue last after the treatment?