Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Posted by nigelvw @nigelvw, Dec 4, 2017

Is anyone here being treated at Mayo in Jacksonville FL?

Liked by titansmistress

Neuroendocrine tumor – the cancer that Steve Jobs and Aretha Franklin died from.

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@tfrancis

What is NETS

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Hello Francis:

I appreciate your asking about NETs. As @tomewilson said, NETs is a form of cancer. It is rare, however, and many people have never heard of it before. For many of us, we first learned about it when we were diagnosed. Here is some information from the Mayo Clinic website that explains it further. Just click on the link and you can read more about it.

https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/care-at-mayo-clinic/mac-20354135

Would you care to share why you are interested in NETs? Have you or a family member been diagnosed with this disorder?

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@hopeful33250

Hello @nigelvw and welcome to Mayo Connect. I don’t recall any of our Members being treated at the Florida location. The wife of @tomewilson is being treated at the Minnesota Mayo Clinic. Perhaps he can fill you in on their experiences there.

Have you or a family member recently been diagnosed with a NET or are you going for a second opinion/consultation?

Whatever your situation, we wish you well. I have had 3 surgeries for NETs since 2003. It is always difficult to wrap your head around the whole process from discovery to treatment. Please share with us, as you are comfortable doing so, something about your NET history.

We are here at Mayo Connect to support and encourage you in this process.

Teresa

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Hey Teresa, it seems you are active on here…I was wondering if you knew, does Mayo Jacksonville offer PRRT?

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@tfrancis

What is NETS

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neuroendocrine tumors

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@hopeful33250

I'm so glad that you posted again, @titansmistress. It sounds like you have had quite an experience of surgery and post-op problems. I'm glad that you are well enough to Connect with us again. Please feel free to share some of your experiences as you are comfortable doing so. I'm looking forward to getting to know you better.

How are you feeling now? What type of surgery did you have? Has there been any monthly injection treatments since your surgery?

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I had the PNET-pancreatic tail/spleen removed Jan 2018 then a very large post-op fluid collection removed July 2018. I'm struggling mentally & physically with persistent symptoms. Abdominal and back pain, freq. urination, freq. thirst, dehydration, loss of appetite, whole body aches w/burning, night sweats, fatigue, weakness, ringing in my ears. Sometimes nausea, headache, insomnia, indigestion, sore throat, sinuses run or stuffed up. I feel like I'm stuck in a bad nightmare. I do everything I can to eat well, stay hydrated, stay on a sleep schedule etc…but it doesn't matter what I do the problem symptoms persist to the point that I'm very depressed. I even took Elavil for months. It helped my mood but I experienced side effects and I discontinued. I'm so frustrated with my health & doctors.

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@titansmistress

I had the PNET-pancreatic tail/spleen removed Jan 2018 then a very large post-op fluid collection removed July 2018. I'm struggling mentally & physically with persistent symptoms. Abdominal and back pain, freq. urination, freq. thirst, dehydration, loss of appetite, whole body aches w/burning, night sweats, fatigue, weakness, ringing in my ears. Sometimes nausea, headache, insomnia, indigestion, sore throat, sinuses run or stuffed up. I feel like I'm stuck in a bad nightmare. I do everything I can to eat well, stay hydrated, stay on a sleep schedule etc…but it doesn't matter what I do the problem symptoms persist to the point that I'm very depressed. I even took Elavil for months. It helped my mood but I experienced side effects and I discontinued. I'm so frustrated with my health & doctors.

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@titansmistress

I'm so sorry to hear of the post-surgery problems you have had. I can imagine that you would feel depressed with so many physical difficulties going on. Since you discontinued the Elavil, have you tried another anti-depressant that might help with your depression?

I'm wondering how the results of your follow up blood work are going. Have you had those levels checked lately?
Does your NET doctor offer you any suggestions for dealing with the symptoms you have?

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@hopeful33250

@titansmistress

I'm so sorry to hear of the post-surgery problems you have had. I can imagine that you would feel depressed with so many physical difficulties going on. Since you discontinued the Elavil, have you tried another anti-depressant that might help with your depression?

I'm wondering how the results of your follow up blood work are going. Have you had those levels checked lately?
Does your NET doctor offer you any suggestions for dealing with the symptoms you have?

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I last saw Dr. Kasi my net specialist in Feb. just before he left Mayo and Dr. Stone I believe is the new net specialist. I've been seeing a doctor in hematology/oncology that's a internal medicine doctor. She's referred me to dermatology, spine medicine, pain clinic, pain rehabilitation/psychology, gynecology. She just referred me to another psychology Dr. for an evaluation hoping they will help discover a anti depressant better suited based on blood work. I don't have cancer but my body screams otherwise. My Pnet was a low grade pancreatic neuroendocrine tumor-well differentiated w/ 1 node out of 12 positive. I still have the same symptoms when I came to Mayo.

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@jls77

Does anyone have paraganglioma tumors?

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Me. I had one in the base of my skull and was removed last December in Mayo Clinic in Jax by Dr Philip Pirgousis

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Hello @patriciagsr

I appreciate your sharing of your experience. On Mayo Connect we all learn from each other. If you are comfortable sharing a bit more about this, could you share: What symptoms did you had prior to surgery? How are you doing since your surgery in December?

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@titansmistress

I last saw Dr. Kasi my net specialist in Feb. just before he left Mayo and Dr. Stone I believe is the new net specialist. I've been seeing a doctor in hematology/oncology that's a internal medicine doctor. She's referred me to dermatology, spine medicine, pain clinic, pain rehabilitation/psychology, gynecology. She just referred me to another psychology Dr. for an evaluation hoping they will help discover a anti depressant better suited based on blood work. I don't have cancer but my body screams otherwise. My Pnet was a low grade pancreatic neuroendocrine tumor-well differentiated w/ 1 node out of 12 positive. I still have the same symptoms when I came to Mayo.

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@titansmistress

I hope that a better anti-depressant is found to help you. Do you have an appointment scheduled yet?

Liked by titansmistress

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@hopeful33250

Hello @patriciagsr

I appreciate your sharing of your experience. On Mayo Connect we all learn from each other. If you are comfortable sharing a bit more about this, could you share: What symptoms did you had prior to surgery? How are you doing since your surgery in December?

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Hello, my symptoms were dizziness, tiredness and some headaches. I live in Peru so my GP ordered an MRI and CT Scan and when he realised it was a paraganglioma he directed me to Mayo since, as we all know, it is a very rare tumor. Has my surgery on Dec 2018 and still struggling with the side effects. One paralysed and collapsed vocal chord (so far got 2 fat and restylane inyection) and my voice is much better. I could swallow so I had a gtube placed for my whole nutrition, liquids and medicines. Still with the tube but being able to swallow things like Gerber baby food but not enough to sustain me. I also got Horner’s Syndrome. I am recovering, very slowly but on the right track. I do all my follow ups in Mayo so I travel there every 3 months. Sometimes a little fed up with all these but keeping up. Dr Pirgousis eas the surgeon and now Dr Casler sees me, Dr Amy Rutt for my voice. I August I will start with an eye doctor and dermatologist (both due to Horner’s Syndrome). They check my swallowing with a barium fluoroscopy. They have told me some symptoms may be permanent or not. Time will tell. Now I do 2 hours daily of swallowing and orofacial therapy. Voice therapy 3 times a week plus acupunture (this is something I added by myself with good results). Everything counts 🙂

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@patriciagsr

Hello, my symptoms were dizziness, tiredness and some headaches. I live in Peru so my GP ordered an MRI and CT Scan and when he realised it was a paraganglioma he directed me to Mayo since, as we all know, it is a very rare tumor. Has my surgery on Dec 2018 and still struggling with the side effects. One paralysed and collapsed vocal chord (so far got 2 fat and restylane inyection) and my voice is much better. I could swallow so I had a gtube placed for my whole nutrition, liquids and medicines. Still with the tube but being able to swallow things like Gerber baby food but not enough to sustain me. I also got Horner’s Syndrome. I am recovering, very slowly but on the right track. I do all my follow ups in Mayo so I travel there every 3 months. Sometimes a little fed up with all these but keeping up. Dr Pirgousis eas the surgeon and now Dr Casler sees me, Dr Amy Rutt for my voice. I August I will start with an eye doctor and dermatologist (both due to Horner’s Syndrome). They check my swallowing with a barium fluoroscopy. They have told me some symptoms may be permanent or not. Time will tell. Now I do 2 hours daily of swallowing and orofacial therapy. Voice therapy 3 times a week plus acupunture (this is something I added by myself with good results). Everything counts 🙂

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I appreciate your sharing more of your health history, @patriciagsr. You certainly do have complex health problems. I'm glad to hear that you are able to go to Mayo periodically for treatment. Your doctor was wise to refer you there. It sounds like given your circumstances you are doing a lot to advocate and help yourself. I do admire that.

I am glad to hear that you are involved with speech therapy. If I may ask, how did the paralyzed vocal cord become a problem? Was it a result of the surgery or another problem? I also have a paralyzed vocal cord as well as atrophy in both cords. I had surgery to put a silastic implant in the paralyzed cord. Has this been suggested to you?

Could you share a bit more about Horner's Syndrome? When was this diagnosed and does it have to do with the surgery as well?

I'm guessing that because of your nutrition issues you may have lost a lot of weight, is that correct? How is your energy level?

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@hopeful33250

@titansmistress

I hope that a better anti-depressant is found to help you. Do you have an appointment scheduled yet?

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Yes, in August.

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How large was your NET (size in mm?). I have same issue 13x14mm

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So sorry for your extended problems. Ron

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