Pituitary and pNET: Can't do the things I love anymore

I mean I can no longer do the things I love anymore... and the pain is off the scale.

Hello, Anthony (@sturns). I would like to join Colleen (@colleenyoung) in welcoming you to Connect. It sounds like you are dealing with a lot of changes as a result of the surgeries and removal of the pituitary gland as well as the PNET diagnosis.

As Colleen asked I'm also wondering what you mean by PNET. Is your neuroendocrine tumor in your pancreas? I hope you post again and let us know more so that we can connect you with others on Connect who might be able to share their experiences with you.

You indicate that you cannot do what you used to love and that your pain is terrible. Is your oncologist offering you any help with these issues?

Yes the oncologist sent me to palliative care but I really hate pain pills. They just make life manageable. The dr's I have are really good but I have 23 tumors in my liver, all over the lymph glands, on the end of the pancreas and more. The pain is when my ab's get distended they sent pain in the liver region and then my back even across. The pain just comes out from left field and it is bad, to your knees bad. Thank you for listening, I'll get through it.

Anthony F

Hi @sturns, welcome to the NETs group. Is that a picture of you surfing?

The abbreviation PNET is sometimes used for primitive neuroectodermal tumor and others use it to refer to pancreatic neuroendocrine tumors (pNET). Can you confirm what type of tumor you have so I can connect with others? What treatment are you currently having for pNET and to manage pain?

I am sorry to hear of your pain, @sturns. I understand what you mean about taking pain pills, but I'm glad that they make life manageable.

Do you have a support system of family and friends nearby?

Thank you, yes that is me and my passion that the pain keeps me from. I have pNET. Thank you for informing me about the difference. I get sandostation (sp), once a month and am going through a procedure now, it's Embolization with TACE, it is three runs, I just went through part 1 of three. The Dr. decided to make it three parts instead of one and the pain I felt for 7-10 days was off the scale. Great Doctor and procedure went well. The stomach distention is much less now . 23 tumors in liver and around the same through out the general area. the tumors are all stable and not growing which is good, I'm hoping the pain will lessen also. I do not do well with pain meds. Thank you for your reply.
Anthony

Hello, Anthony (@sturns). I would like to join Colleen (@colleenyoung) in welcoming you to Connect. It sounds like you are dealing with a lot of changes as a result of the surgeries and removal of the pituitary gland as well as the PNET diagnosis.

As Colleen asked I'm also wondering what you mean by PNET. Is your neuroendocrine tumor in your pancreas? I hope you post again and let us know more so that we can connect you with others on Connect who might be able to share their experiences with you.

You indicate that you cannot do what you used to love and that your pain is terrible. Is your oncologist offering you any help with these issues?

Thank you, yes that is me and my passion that the pain keeps me from. I have pNET. Thank you for informing me about the difference. I get sandostation (sp), once a month and am going through a procedure now, it's Embolization with TACE, it is three runs, I just went through part 1 of three. The Dr. decided to make it three parts instead of one and the pain I felt for 7-10 days was off the scale. Great Doctor and procedure went well. The stomach distention is much less now . 23 tumors in liver and around the same through out the general area. the tumors are all stable and not growing which is good, I'm hoping the pain will lessen also. I do not do well with pain meds. Thank you for your reply.
Anthony