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?

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

@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?

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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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@ronregency

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

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@ronregency, Hi Ron

Thanks for sharing here on Connect and especially with @titansmistress. As you are comfortable doing so, would you share a bit about your history with this disorder: For example: How long ago was your surgery? How you are doing post-surgery? Have you had some of the same symptoms?

All of us with NETs appreciate the sharing of others with this rare disorder. I look forward to getting to know you better.

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@hopeful33250

@ronregency, Hi Ron

Thanks for sharing here on Connect and especially with @titansmistress. As you are comfortable doing so, would you share a bit about your history with this disorder: For example: How long ago was your surgery? How you are doing post-surgery? Have you had some of the same symptoms?

All of us with NETs appreciate the sharing of others with this rare disorder. I look forward to getting to know you better.

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I was officially diagnosed one week ago with a core needle biopsy. I had a colon resection for a large polyp in Oct 2018. Post surgery I had sepsis and pneumonia. During my recovery from that, I had lower right abdominal pain and had a CT. Nothing showed up in the LR abd, but there was a 3cm mass in the midline mesentery. My surgeon ordered a PET but it was denied by insurance. Meanwhile I had symptoms of IBS. Five months later, and after four attempts to get the PET, my surgeon called the medical director at the insurance company and the PET was approved. The mass lit up, leading to the core biopsy. No I wait to see the oncologist next week…

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Hello @emmiel14 and welcome to Mayo Connect,

I am pleased that your doctor was able to get approval for the PET, that helped arrive at a diagnosis. It sounds as if you have been dealing with a lot of health problems since October 2018.

Will your oncologist be making the decision on the type of treatment you will have? Does surgery seem to be the first course of action at this point?

I'm looking forward to hearing from you after your appointment next week. Will you provide an update?

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@hopeful33250

Hello @emmiel14 and welcome to Mayo Connect,

I am pleased that your doctor was able to get approval for the PET, that helped arrive at a diagnosis. It sounds as if you have been dealing with a lot of health problems since October 2018.

Will your oncologist be making the decision on the type of treatment you will have? Does surgery seem to be the first course of action at this point?

I'm looking forward to hearing from you after your appointment next week. Will you provide an update?

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My general surgeon, who got the PET approved, said it "has to come out." I am being referred to an oncologist and surgeon through the U of AZ. My problem is that I am very prone to C-diff and seem to have all of these odd side effects after procedures. I am more afraid of the surgery than the cancer. I will know more after the 27th June and keep you informed.

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@emmiel14

My general surgeon, who got the PET approved, said it "has to come out." I am being referred to an oncologist and surgeon through the U of AZ. My problem is that I am very prone to C-diff and seem to have all of these odd side effects after procedures. I am more afraid of the surgery than the cancer. I will know more after the 27th June and keep you informed.

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@emmiel14

With your history of C-Diff, I can understand your concerns about surgery. I would be sure to let the surgeon know of this problem and inquire as to what steps can be taken to avoid the problem with this surgery. (But, I'm sure you were already planning on doing this.)

I look forward to your posting after the 27th and hearing how your appointment with the surgeon went.

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@hopeful33250

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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Hello @hopeful33250. My left vocal cord was paralizad after the big surgery (they told me this happens many time when they intube you for anesthesia), now it is not only paralized but has collapsed. Just had fat Inyected and they hace recommend to do what you have done in the near future. Did you have good results ? How was the surgery ? Any side effects except not able to talk for a week or so ? One of my problems is that a have so much flems and saliva that trying to eat is complicated. I end up spitting almost everything I eat but I keep doing with my therapist so my muscles get practice.
My horner’s Syndrome is also from the surgery. For that I have orofacial therapy every day and my eye is much better. Apparently this makes the side affected I your face dry and that can affect the cornea. Will still have my appointment with the specialist in August. This was also because if the surgery.

I have lost lots of weight but now I am in my limit, can’t loose more. I am changing nutritionist next week. I was on Isosource 1,5 with fiber for 5 months and it was hell for me. Continues nausea and vomits. I month ago I switched to a blend diet at home and it is much much better. I feel better and with much more energy. My diet has everything plus supplements. I do recommend that strongly, eat food not supplements.
Hope this helps 🙂

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