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Anyone with lung neuroendocrine tumor experienced significant weight?
Neuroendocrine Tumors (NETs) | Last Active: Jun 8 11:18am | Replies (19)Comment receiving replies
@tomrennie Thank you for sharing. I'm sorry you had to go through all that and happy to hear you are doing better and have regained your weight. I wonder did you have nausea from the chemo? The smell and even thinking of food and eating makes me nauseous. I agree with you, neuroendicrine cells are also found in the gallbladder, although my oncologist says a gallbladder is a very unlikely place for a NET. My gallbladder polyp did not light up on the PET scan. I just had a follow up MRI which showed no changes, so oncologist said I don't need to do anything and should focus on my lung NET first. The nausea is unbarable, I have it all day, regardless if I eat or not. I only get relief when I sleep. I do cry a lot, as I also have terrible fatigue, weakness, and joint and muscle pain. I'm unable to work or function at home. The only thing that sometimes works for my nausea is dramamine. I can not tolerate zofran. The protein shakes do help when I can not swallow any food at all.
I hope I can see a NET specialist soon and get some answers. I also have hyperparathyroidsm which is an endocrine condition and could be causing my symptoms. No doctor has been able to put all my issues together. In the meantime, I continue to lose weight. Although my BMI is still within healthy range (I was overweight a year ago), the continued nausea and weight loss, and feeling unwell is very worrisome.
Replies to "@tomrennie Thank you for sharing. I'm sorry you had to go through all that and happy..."
@pantfan I attended a Mayo NETs support group zoom call yesterday. The speaker was a Mayo palliative care doctor. I really didn't know the difference between hospice and palliative care, so I was curious to hear what he had to say. He simplified my confusion between hospice and palliative care. He said hospice is for comfort during end of life. Palliative care is for comfort during serious illness and treatment. I thought of you, when he said that. Have you sought any palliative care?
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@pantfan I still get some nausea from the chemo, but it is a different kind of nausea. I don't know how else to describe it. Chemo nausea is annoying. I did take Zofran during my initial chemo cocktail of capecitabine and temozolomide. They, especially the temozolomide, made me nauseous and vomit. Now, I just take capecitabine. The nausea is tolerable. But the nausea that causes a lack of appetite is crippling. You described it well. It is extremely rare for gallbladder NETs, but like I previously typed, I have met someone here that had them spread to their gallbladder. It happens. I don't know anything about hyperparathyroidism, so I will take your word for it. But, I do know what it is like to feel like you. It is horrible. I know NETs caused me to feel that way. I sure hope that the NETs specialist can put the pieces of your puzzle together, so you can have a complete picture of what you are dealing with. Physically, mentally, and emotionally, you need a positive light at the end of the tunnel that isn't an oncoming train. It seems that train has already hit you a few times. I still cry. You have to let that anger, frustration, utter helplessness, and all of the other emotions that come with how you feel, out. I believe crying soothes the soul. I do want to encourage you to have your questions prepared prior to each doctor's appointment, if you aren't doing that already. Is that something that you currently do?