Complicated NET Surgery Needed

Posted by hammerhead225 @hammerhead225, Jun 8 7:44am

They believe they found the original NET in my lower ileum. The plan or removing that part of the small intestine, appendix, and part of colon depending on involvement. Then rerouting the small intestine into the large. They call it a ileocecal resection. Then will travel north to the liver and attempt to resect multiple NETs in my liver. They will also remove my gall bladder. A bit overwhelming to say the least. I will start Octreotide injection this week and have 3 before surgery in August. Just curious if anyone here has had a similar surgery to remove tumor burden before starting other chemical therapy?

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

hammerhead225 | @hammerhead225 | 9 hours ago

In reply to @hopeful33250 "Hello @dadcue You posted about starting Lanreotide injections. Have you scheduled your first injection yet?" + (show)

@hopeful33250 I see you were directing your question to @dadcue, but I figured I'd add my 2 cents. My 1st injection was June 11th. Since then my symptoms of severe flushing and pain in the liver area have subsided greatly. I'm waiting to get the results of a recent blood test to check chromogranin levels to see how effective the initial Lanreotide injection has been.

Mike | @dadcue | 9 hours ago

In reply to @hopeful33250 "Hello @dadcue You posted about starting Lanreotide injections. Have you scheduled your first injection yet?" + (show)

@hopeful33250

I had my first injection a month ago and my second injection is tomorrow on July 9th.

No problems with the first injection ... I can't say for sure that anything changed but I hope Lanreotide does what it is supposed to do. I'm also hoping I don't have a need for surgery. I see the surgeon again in December.

Teresa, Volunteer Mentor | @hopeful33250 | 8 hours ago

In reply to @hammerhead225 "@hopeful33250 I see you were directing your question to @dadcue, but I figured I'd add my..." + (show)

@hammerhead225 I appreciate your update on your first injection. I'm sure you're pleased to notice a lessening of symptoms. Will you be receiving your second injection soon?

Were there any side effects from the injection? Will you keep updating me on the results?

Teresa, Volunteer Mentor | @hopeful33250 | 8 hours ago

In reply to @dadcue "@hopeful33250 I had my first injection a month ago and my second injection is tomorrow on..." + (show)

@dadcue
I am glad to hear that you did not have any problems with the first injection. I also hope there are good results. How are you feeling otherwise?

Mike | @dadcue | 8 hours ago

In reply to @hammerhead225 "@hopeful33250 I see you were directing your question to @dadcue, but I figured I'd add my..." + (show)

@hammerhead225 and @hopeful33250
My CgA, serotonin, insulin, pancreastatin and gastrin levels are all elevated but I can't say I feel that bad. None of these levels are super high but I'm told they aren't good. I haven't felt great for a long time so maybe I won't feel any different. The last 5 years were much improved compared to the previous 20 years. This NET is just the next thing I need to deal with.

I'm more afraid of what they might find if I do surgery. My Dotatate Scan was intense in a couple of places but diffused low level intensity everywhere else. The low level intensity areas were described as areas of inflammation. I was surprised I have inflammtion because I'm on a biologic that stops my inflammation. The surgeon wants to stop the biologic that suppresses my immune system before doing surgery. I don't think that is even remotely possible.

hammerhead225 | @hammerhead225 | 5 hours ago

In reply to @hopeful33250 "@hammerhead225 I appreciate your update on your first injection. I'm sure you're pleased to notice a..." + (show)

@hopeful33250 Absolutely! I get my 2nd dose 7/9. Then off to Flrida for a beach vacation before the cutting begins. Really no side effects to speak of. Lettle pain at the injection site for a few hours. I'll try to be more attentive to this message board. I guess I'm in a bit of denial.

Mike | @dadcue | 4 hours ago

In reply to @hammerhead225 "@hopeful33250 Absolutely! I get my 2nd dose 7/9. Then off to Flrida for a beach vacation..." + (show)

@hammerhead225

Let me know how the cutting goes. I can't begin to wrap my head around that so I can't see surgery happening anytime soon. I see the surgeon again in December. A trip to Florida in January for some warm weather will be my excuse for not doing surgery. Florida is first ... then Southern California followed by Hawaii so all of that delays surgery until 2028 at the earliest. I don't feel bad so I don't want surgery anytime soon .

My second Lanreotide injection will be 7/9 also. The NET specialist said 6 months of Lanreotide would be enough time to see if there is some improvement. Otherwise, the NET specialist said it was only a matter of time before I have a bowel obstruction. Then surgery would be needed if I wanted surgery or not.

I'm planning on some improvement after 6 months of Lanreotide. I might be having some denial too.

Teresa, Volunteer Mentor | @hopeful33250 | 4 hours ago

In reply to @dadcue "@hammerhead225 and @hopeful33250 My CgA, serotonin, insulin, pancreastatin and gastrin levels are all elevated but I..." + (show)

@dadcue
I find your discussion on biologic interesting. How long have you been on the biologic? Is it used to treat a specific type of inflammation, or is it for inflammation in general?

Teresa, Volunteer Mentor | @hopeful33250 | 4 hours ago

In reply to @hammerhead225 "@hopeful33250 Absolutely! I get my 2nd dose 7/9. Then off to Flrida for a beach vacation..." + (show)

@hammerhead225
What type of surgery will you be having? Have you already met with a surgeon?

Mike | @dadcue | 3 hours ago

In reply to @hopeful33250 "@dadcue I find your discussion on biologic interesting. How long have you been on the biologic?..." + (show)

@hopeful33250

It is an IL-6 receptor blocker called Actemra (tocilizumab) which I currently take for several autoimmune conditions. I have a long history of autoimmune disorders and Actemra works well for me.

I was started on Actemra in 2019. There was evidence of my NET in 2020 and they suspect a NET was present long before that. My NET is slow growing.

Is it possible that Actemra is making my NET symptoms better than I should be feeling??
https://pmc.ncbi.nlm.nih.gov/articles/PMC12207837/
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I had carcinoid symptoms in 2019 when I tried to taper off Prednisone. Those symptoms were linked to adrenal insufficiency from long term Prednisone use.