Living with Neuroendocrine NETS, any advice?

Posted by gg66 @gg66, Dec 13, 2024

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my experience

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@mb6502

I have metastasis to my bones as well - started in the femur and now spread to my ribs and scapula. I had three rounds of radiation, but the tumors still persist. Have your Doctor's done anything to treat the tumors in your bones and/or have they gone away or gotten smaller from the chemo? Also, do you experience any side effects from the bone lesions?
Thanks!

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The bone lesions are mostly all gone and not a concern. I can't attribute any side affects specifically to the bone lesions. I was really sick at the time. Sorry. What are you experiencing?

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My husband has been fighting this since 2021, he had a tumor removed from his spine & then it metastized to his liver & bones (now bone cancer) he had another MRI of the abdomen last week & that shows his left lower lobe of his lung has now collapsed with gray shadowing ( he has never been a smoker) next week he will have another MRI of his spine, praying for good results.

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@katinka58

My husband has been fighting this since 2021, he had a tumor removed from his spine & then it metastized to his liver & bones (now bone cancer) he had another MRI of the abdomen last week & that shows his left lower lobe of his lung has now collapsed with gray shadowing ( he has never been a smoker) next week he will have another MRI of his spine, praying for good results.

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Hello @katinka58,

I'm sorry to hear the recent MRI showed more problems with your husband's lung. Has he been experiencing any coughing or shortness of breath? Has his medical team indicated what treatment might be considered for the lung problem?

We do have several members on Connect who have discussed NETs in the lung. Is the collapsed lung considered to be a result of the NETs in the liver or bone or perhaps a new site for the NET?

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@hopeful33250

Hello @katinka58,

I'm sorry to hear the recent MRI showed more problems with your husband's lung. Has he been experiencing any coughing or shortness of breath? Has his medical team indicated what treatment might be considered for the lung problem?

We do have several members on Connect who have discussed NETs in the lung. Is the collapsed lung considered to be a result of the NETs in the liver or bone or perhaps a new site for the NET?

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He has had a nodule since 2019, so we don’t know if it was part of NET & just didn’t show anything, we have an appt. With oncologist in a couple weeks so it will be interesting on his take

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@katinka58

He has had a nodule since 2019, so we don’t know if it was part of NET & just didn’t show anything, we have an appt. With oncologist in a couple weeks so it will be interesting on his take

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I'm glad that an appointment was made. If you have any questions or concerns in the meantime, please post them.
Will you post again and let me know how he is doing?

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@hopeful33250

I'm glad that an appointment was made. If you have any questions or concerns in the meantime, please post them.
Will you post again and let me know how he is doing?

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Yes thank you

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