I am interested in hearing from anyone who may have recently had liver debulking surgery due to mets to the liver? thanks. MKMN
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Thank you for responding and the friendly welcome! Btw, I meant NG tube in my intro. My treatment begins this Wednesday. Needless to say I’m very nervous. My symptoms at this time include some pain on my left side under or around my rib area. Not sure this is caused by the cancer, but it really isn’t severe. It’s enough to let me know it exists. I am also back to flushing which I absolutely hate! However I think I’ve somewhat learned how to handle it and just move right along with my day. Loose stools, urgent ones at that. I think my biggest complaint is being a bit short tempered and insecure about anything and everything, I’ve had quite a bit of hair loss, thankfully I had so much hair it doesn’t show unless people have known me. It was about to my waist and very thick and I began cutting it until it reached my shoulders. I can feel the thin-ness of it now. So at this point this is what I’m going through. Simple stuff, right? Also since being taken off afinitor I am now able to eat again and hoping this new treatment will not make my food taste like metal.
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As I recall your treatment was to begin today. I hope it goes well for you.
Would you post an update as it's convenient for you?
I did have my treatment and all went well. I had to laugh at myself for acting like a big baby because in all honesty I was very frightened and thinking I was going to be knocking on heavens door. 😂 As you can see that didn’t happen and I feel great. Thank you for asking.
Yes, I do have some pain and oddly enough the pain is in areas of old injuries from a “car vs motorcycle” accident. I ignore it and go about my business and all is well.
I’ve had no trouble eating anything, am thirsty quite a bit and haven’t really been tired. I did have small issues with shortness of breath while walking to the parking lot, but after getting settled in for my 2 hr ride it all stopped and I haven’t experienced it since. I did take a short nap when I got home and here and there I felt a little tired, but other than that I’m fine.
All I can say to anyone about this nuclear medicine is fears of the unknown are real and very natural, but it wasn’t anything near what my my mind was creating.
This is my first treatment so I have not had any other experiences to share at this point: ie: like being really fatigued,or any other after effects that are possible and that’s a plus. I’m sure that with each treatment some of the things I’ve experienced so far may become stronger like fatigue, but that’s ok I can handle that.
Caitrina (aka Cat)
So good to hear from you and so glad to hear that all went well. It is a relief, I'm sure, to have had a positive experience. When will you have your next treatment?
Caitrina, I am glad to see your comments after the liver debunking. It is helpful to learn that the procedure was easier than you predicted and you are feeling better. I have NET with met to liver and have wondered if this treatment may be in my future. Thank you for sharing your feelings! I wish you peace and healing. Bette A
Thank you! Yes this treatment was not bad. I seem to be having a Headache here and there which may not even be related. I had to have an injection of sandrostatin afterwards and the shot hurts more than my headache! I get this injection every 4 weeks at my local oncologist but they did it at Mayo this time and I think I’m going to kidnap the nurse that usually gives that injection when I have to go to Mayo! She’s great at it! 😁I wish you all the best also with whatever treatments you may have in your future. Hope the rest of this year is good to all of us!
My next treatment will be toward the end of January.
I just noticed that @caitrina's post is in the liver debulking group, however, she had PRRT which is a form of chemotherapy for NETs. Sorry for the confusion.
Thank you for clarification Theresa! Bette
@hopeful33250 and @dbamos1945 sorry about that. My phone is totally cracked on the back and I’ve noticed that sometimes it does some crazy things, like it has 2 screens or makes certain things difficult to see. So I try to wing it the best I can. It makes life interesting to say the least. In the future I will be more watchful. Hoping to treat myself after the holidays! Again I apologize, do not want to send anyone down a wrong path.
No problem, @caitrina! It's good to have you post wherever or whenever you can. We will figure it out.
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