Is anyone here being treated at Mayo in Jacksonville FL?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.
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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I appreciate your posting again. My surgery was a bit different from the one proposed for you in that the implant was not from my own body lipids but from a substance that was created for the implant. However, the surgery did work well (and still does). I was given a lot of prednisone after the surgery to keep down the swelling, inflammation, etc. and the neck area was wrapped with gauze. I talked with far less fatigue which wonderful!
I agree that a healthy diet is more important than supplements, even though supplements can be helpful at times.
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.
Yesterday I saw an oncologist here in Tucson. His thought was that the primary tumor is in the small intestines but it did not show up in the PET. This matches the path report as "…consistent with primary small intestinal carcinoid tumor." He said "I can just leave it (the 3cm mesentery mass) there since it is very slow growing." I have an appointment with Dr. Chee Chee Stucky on Jul 1. Eager to see what she says….
I'm so glad for the update! The wait and see approach seems to be done a lot these days for NETs as they are very slow growing. Given your history of C-Diff I'm sure that you were pleased as well.
I did a little research on Dr. Stucky and she appears to be very well-trained. Here is a link to her bio, https://www.mayoclinic.org/biographies/stucky-chee-chee-h-m-d/bio-20163956
Will you post again after your appointment on July 1? I'll be looking forward to hearing how your appointment goes. Wishing you well!
My appt is July 11 with Dr. Stucky. I saw my general surgeon this morning and she said if I had the surgery, Dr.Stucky may feel the small intestines for a possible nodule. What happens next is a mystery. …
@emmiel14 My first two surgeries were invasive and I recall that the surgeon palpated the intestines to check for other tumors so that is probably the typical protocol. Thanks for correcting me on July 11. I'll look forward to hearing from you then.
To All Members of the NET discussion group:
For those of you living and/or visiting in Florida on July 16, I wanted to let you know about a symposium for cancer patients and their families. Here is a link with more information about, "Family First." It is available to all cancer patients and their families to learn more about the impact of a cancer diagnosis and to let you know that you are not alone. To register, or get more information, just click on the link below.
Ive been a Pnet patient at Mayo in Jacksonville since December 2017.
There’s a support group in Jacksonville, FL. I am not sure if you have been told about it or not yet. We meet on the first Thursday of the month at 5:30pm and there is a call in number if you cannot make it in person.
I was thinking about you and wondering how you are doing. I hope you are feeling well. Any new developments in the treatment of the tumor or the C-Diff?
Thank you for reaching out. Wow. So much has happened. Dr. Stuckey did my surgery Aug 12, removing 12" of small intestine, which contained 13 grain of sand-sized NETs. Two of 22 lymph nodes were positive for mets. I had no pain at all after the surgery! No sepsis, no c-diff. Went home Aug 17. Doing okay at first, then loss of appetite and fatigue.
On Aug 28 I had doubled over severe lower abd pain and went to a Tucson ER. They air-lifted me to Mayo Phoenix, admitted for severe colitis and two abscesses. Placed on bowel rest with infused nutrients for 5 days. Two drains, on of which was removed before I came home Sept 4. I return to May this Tues for another CT, removal of drain. labs and visit with Dr. Stuckey.
It has been a very long haul! Some days are better than others & I find myself getting somewhat impatient to feel better. Everyone says my body has been through a LOT, so I believe them.
@emmiel14 Hi Emmie
I do appreciate your update. You have been through a lot since August and you do need to give yourself time to recover from the Aug. 12 surgery and Aug. 28 problems. Will you have to have any follow up treatment for the NETs (like monthly shots, etc.)?
How are you doing with eating and nutrition? Are you able to eat most foods comfortably?
I am on a low fiber diet with Metamucil 2x/day. I'm still staying away from hard to digest foods, salads, nuts, whole wheat, tomato sauces, greasy foods, etc. I'm down 22 lbs. I don't see my oncologist until Sep 23, so will see what he recommends. I have absolutely NO clue what he will suggest, possibly a follow-up CT in a few months?
I'm tired and weak. Don't feel like doing the usual things. I really want to but my body just doesn't respond the same. I'm hoping this is a normal response, but it is getting old! I've always kept busy with lots of energy so this is really foreign to me!
I am 77 ……energy comes in waves….some times more spoons, other times its an effort to do anything….also on no fat or low fat …very low fibre if any , lost about 10 lbs but now stable….also diabetic with prostate cancer that has metastasized….recent shot of Lupron is causing depression to get worse….sometimes problem with gas and bloating but antacid liquid helps with that…..every day is different ….caffeine helps me but sometimes it triggers diarrhea…….I stay around my house a lot so I am near a toilet and I just put a new one in on a day with more spoons ….check " smart patients .com " and follow people with NET issues……..all in all its adjusting to a new way of living and some days its laying in bed with my border collie / australian shepard watching Turner Classic movies and praying…….its not so bad and each day I thank God and pray for others too . Peace be with you.
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