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Posts (76)

Wed, Jun 12 8:05am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Your story is enlightening as to results after each medical event. I pray you remain well. My MP story led me to Mayo Clinic where an exploratory revealed Stage III B Carcinoid (neuroendocrine) small bowel cancer which was surgically removed. After many years dealing with local doctors unfamiliar with MP, the doctors at Mayo Clinic in Rochester, MN knew what to look for. In my case, MP was a symptom of an underlying disease. I urge anyone with painful chronic MP to pursue a Mayo Clinic consult.

Thu, May 23 2:05pm · When to Stop Seeking out Surgical Drs... in Neuroendocrine Tumors (NETs)

These posts are very much appreciated. As a Carcinoid NEC Stage 3, MENS 1 survivor for 3 yrs so far, I take notice of such helpful information and share it with other Carcinoid patients I know.
Thank you all.

Thu, May 2 9:19pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Write a one page letter to Dr Pardi or Dr Alexander at Mayo Clinic Gastro Dept in Rochester, MN. Explain your symptoms and pain level, and state what tests you have had and what doctors you have seen and results or non results. Ask for an appointment. You will be contacted with an appointment followed by a schedule for bloodwork, scans, consults. Expect to spend 10 days. They are very thorough. I consented to an exploratory and was diagnosed with Carcinoid Cancer. My MP was a symptom of that underlying rare cancer which local surgeons and specialists were never experienced to know what to look for. Book a flight on Delta Mayo. Stay at hotel right across from Mayo bldg. Mayo will send you a list of places to stay. Good luck.

Thu, May 2 9:07pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Yes, when my MP was active I had horrible back pain directly related to MP.

Thu, Apr 25 6:11pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hope I am helpful with my story. I have posted before but probably newbies have not seen it. After
many years of symptoms and area gastro and surgeons failing to know what my symptoms could really mean I consulted Mayo Clinic. Even after a CT scan at ER in my Home area, doctors failed to make the connection that an enlarged lymph node in the mesentery which indicated need for biopsy might be something more serious. And all the doctors telling me it was impossible to get to that location to do a biopsy. But it was possible at Mayo Clinic. Turns out my case was Stage IIIB, MENS1, neuroendocrine Carcinoid Cancer. Only found through an exploratory. Three feet of small bowel, 12 tumors and 13 lymph nodes removed. Follow-up every six months bloodwork and yearly scan now at Dana Farber. Had Octreoscan, also Gallium-68 scan now available in America since 2016 previously only in Germany and I believe Switzerland (please google to fact check me). So far cancer free since July 2016. I, too, had nausea, 25 pound weight loss, painful abdominal and back pain, diarrhea. Finally pursued best care ever at Mayo Clinic. They saved my life.

Tue, Apr 2 11:35pm · When to Stop Seeking out Surgical Drs... in Neuroendocrine Tumors (NETs)

My brother is on Keytruda even though he was not a good candidate for it but doctors are amazed at how well it is working and doctors are finding it works on more types of cancers than previously known. Financially, see if your health insurer has a Cancer Services Program to reimburse expenses not normally covered.

Sun, Mar 31 10:40pm · Trying to recover from a c.diff infection in Digestive Health

My best advice is avoid popcorn, seeds, nuts, skins, corn. Child probiotics.

Sat, Mar 30 4:41am · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer

Feeling ok and do my best to.keep busy and motivated to get projects done while I do feel ok. Hang in there and don’t stop your check-ups.