Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF

@mmar2025 I've always considered it a journey also, My friends laugh when I relate my situation this way..Upon diagnosis "I received my airline ticket to the next life, it's been 3 years and no seat assignment! and my hopes and prayers are that I can postpone that boarding pass!! My thoughts an prayers are with you..

@mmar2025 I've always considered it a journey also, My friends laugh when I relate my situation this way..Upon diagnosis "I received my airline ticket to the next life, it's been 3 years and no seat assignment! and my hopes and prayers are that I can postpone that boarding pass!! My thoughts an prayers are with you..

So I had my first treatment. Of course, like most everyone in this situation you just don't know what to expect. Everything went well. Interestingly, the nurse who put in the IVs asked me if I had eaten breakfast. There had not been any prior discussion about food intake before the procedure, so I was surprised. I did have breakfast...eggs, toast and turkey sausage, along with juice and coffee. She was very happy. She said most people do not eat breakfast at all. She said it is best to have something in your stomach before the procedure. Maybe some of you were given specific directions, but there was nothing in my paperwork about that. I don't know if it made a difference, but I did not have any nausea, metallic taste in my mouth, or stomach problems. Maybe this made the difference. Again, I don't know for sure, but maybe it is something to think about prior to having the procedure done. It is now the following day now and I am definitely tired. I suspect that will be the case for awhile.

@mmar2025 I was tired for 2-3 days...

@vinnie694 Thank you. That would be doable.

@mmar2025 How are you feeling?

@tomrennie The PRRT was not bad at all. My skin is sensitive and I have to be careful when scratching since I do itch. The skin will break very easily. I am being more careful and using lotion. Very tired for three or four days. The geiger counter read 110,000CPM while now sitting on my liver. It is down into the 20,000's after a week. It is supposed to read 100 or less. Note: It is not a medical appropriate device. It does start making a warning sound even when I'm in another room. It makes you feel all warm and fuzzy! (I'm being sarcastic.) It would be nice to know if anything is working, but we all have to wait it out. The worst dilemma is the constipation. PRRT and a lanreotide injection will do that. So, all and all, things are 👍okay. Thank you for asking.

@mmar2025 Have you tried anything for the constipation? Progress comes slowly. But, you are doing what you have to to get good results. Keep moving forward with a positive attitude and good things will happen. Also, thanks for clarifying your sarcasm. I didn't know, if I was allowed to laugh or not. It was funny.

@tomrennie I am told to drink 64 ounces of Gatorade and 1 bottle of Miralax, stirred, in one hour. A bowel prep. I'm staring at it.... Progress may not come slowly. Laugh anytime you want. I hope I can find laughter for a long time.