11/29/2017 at 11:43 am #2235
Hello fellow Carcinoids!
This is my story.
The main reason I joined this NET group, was to see if anyone else, in my same condition, also suffers from 24/7 chronic nausea. Medications could cause it, and after stopping my BP and diabetes medications, I still had it. So, I’m guessing by process of elimination, that the main culprit(s) are my active Carcinoid tumors, and ALSO my monthly 20MG Octreotide-Sandostatin intramuscular shot, I’ve been on since 2006.
Each 20mg monthly injection retails between $10,800.00, and $12,000.00, and with BlueSheild, with each injection, my co-pay is still a whopping $ 800.00, per monthly injection, for the rest of my LIFE! At some point, I will have to discontinue these life-saving injections, before i go absoulutely BROKE, or NUTS!!
It’s been 12 years now, since 2005, this condition entered my life, and correctly diagnosed. After a long bout with my problems with digesting food, swallowing fluids, major pelvic spasms, and cramping, and constipation, and the drs. back then telling me all that time, that I had IBS, which eerily mimics some of the same symptoms in the digestive tract, like other conditions such as,
IBS, IBD, Crohn’s, and Celiac, to name a few, and was so hard to catch, mainly because this is so rare, and a colonoscopy before this, my GI totally missed the obstruction,by not going around the ascending colon, near my Cecil and appendix.
Well, I’m the only one who knows my everyday aches and pains, and had a strong feeling, something was causing my pain, every time I would eat, or drink, I would get this pain in my lower right ascending colon.
One day, a smart, inquisitive Attending DR. asked me if I had a CT, I said no. They scheduled one a.s.a.p. Ten (10) core CT guided biopsies, and the first pathology report came back as, “Non-Hodgkins Lymphoma.”
A week later, the radiologist, called me back for another round of samples, he was curios, but this outcome yielded a much different diagnosis, this time, I was told by my general surgeon, and oncologist, that this was a very rare,
“NET Neuroendocrine Carcinoid Tumor,” now metastatic, with three laparoscopic DaVinci robotic surgeries.
*First Surgery ~
October 23, 2006.
(General Hemi-Colectomy) Removal of 18″ of carcinoid involved lymph nodes, in ascending colon.
*Second Surgery ~
December 11, 2007.
(Excision of twin tumors, between my rectum, and seminal vesicles. DaVinci Robot Laparoscopic)
“Rectum?, I nearly killed them! (Sorry, I couldn’t resist, because laughter is the best
*Third Surgery ~
January 12, 2009. (Radical Prostatectomy) For what was to be, (preferably to me) a nerve-sparing procedure, they unfortunately found not only more carcinoid than expected, but also found Prostate Cancer in both gland’s blood vessels. 😞
November 2015. Gallbladder.
My G.I.suggested removing, because I had a few gallstones, and hopefully that would help alleviate my severe, and every day, and night of chronic nausea.
Just my luck!!! Got dealt a bad hand. Nothing I have done in my life, or from anyone else, ever caused me to have this type of condition. There are all kinds of Cancer, some worse than others, but whatever the prognosis is, it still sucks, and there’s nothing good about it, there is no cure, only monitoring, and if there is any light at the end of this tunnel, then it’s knowing that this is a very slow advancing tumor cancer. The best course of action is to catch it early, before it metastasizes in advanced stages.
…Sooo, for the new upcoming 2018 year ahead, I’m hoping, praying, and wishing, for….NO MORE surgeries, NO MORE elevated tumor markers, and NO MORE NEW metastasis, because life’s too short and hard enough, without all this constant worry about my mortality, and where this carcinoid may take me in my future!
But again, all of our days are numbered, right?….
SO TAKE REALLY GOOD CARE OF YOURSELVES!!
Remember, YOU are your BEST Health Advocate!
Thank You, for taking the time to read this.
- This topic was modified 1 month, 3 weeks ago by Jimtumor05. Reason: Spelling
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