Teresa,
I have not had a re-occurrence although the doctors remain concerned about that. Because I am also at a higher risk for pancreatic cancer, so I have an annual CT scan in hopes that we would catch either problem soon enough to deal with it proactively. I take 3 x 500 mg tabs of turmeric. I also take an anti-oxidant with vitamins A, C, and E. It also contains zinc, selenium, copper, and manganese. The list of minerals is extensive, so I will just say it is made by Solgar. I don't promote any brand of supplement, but you can find a list of those that doctors are comfortable with by googling the question. I prefer those manufactured in the US even though they are not dealt with by the FDA, the manufacturing process of a food substance is regulated in the states.
Back to the NET; by the time we got to removing mine, it had essentially caused the organ to begin eating itself (not scientific terms, but similar issue) and so I had a distal pancreatectomy and splenectomy to remove the tumor and it was benign.
Any more specific questions and I will give it my best shot.
Teresa,
I have not had a re-occurrence although the doctors remain concerned about that. Because I am also at a higher risk for pancreatic cancer, so I have an annual CT scan in hopes that we would catch either problem soon enough to deal with it proactively. I take 3 x 500 mg tabs of turmeric. I also take an anti-oxidant with vitamins A, C, and E. It also contains zinc, selenium, copper, and manganese. The list of minerals is extensive, so I will just say it is made by Solgar. I don't promote any brand of supplement, but you can find a list of those that doctors are comfortable with by googling the question. I prefer those manufactured in the US even though they are not dealt with by the FDA, the manufacturing process of a food substance is regulated in the states.
Back to the NET; by the time we got to removing mine, it had essentially caused the organ to begin eating itself (not scientific terms, but similar issue) and so I had a distal pancreatectomy and splenectomy to remove the tumor and it was benign.
Any more specific questions and I will give it my best shot.
@gman007 Thanks, Gary. I appreciate the information. Have you ever had the 68Gallium scan? In the NET discussion group, there is a post about it. Teresa
@tnabs2008, Welcome to Connect. my husband had a real painful episode of pancreatitis in October. It was painful for him and frightening for both of us.
How is your husband doing?
Rosemary
@tnabs2008, Welcome to Connect. my husband had a real painful episode of pancreatitis in October. It was painful for him and frightening for both of us.
How is your husband doing?
Rosemary
After posting my response, I did go and do some research and it sounds like a much more effective locator of NET's than a simple CT scan. My tumor that required the removal of much of my pancreas was not seen on a recent scan and was found by doctors who were going in endoscpically for a celiac plexus block and found the tumor once inside. I would appreciate the more precise findings of the 68gallium scan
After posting my response, I did go and do some research and it sounds like a much more effective locator of NET's than a simple CT scan. My tumor that required the removal of much of my pancreas was not seen on a recent scan and was found by doctors who were going in endoscpically for a celiac plexus block and found the tumor once inside. I would appreciate the more precise findings of the 68gallium scan
@gman007 I understand - my NETs were also found endoscopically. Perhaps you should talk with your doctor/oncologist regarding the 68Gallium scan. There is one center in my state that has this diagnostic tool and as you can see from my post above, Mayo Clinic in Minnesota also has it available for NET patients. Teresa
There are three in NC and I live in upstate SC, so I could get to a center without too much trouble and will mention that to my GI in October. Thanks for the heads up.
There are three in NC and I live in upstate SC, so I could get to a center without too much trouble and will mention that to my GI in October. Thanks for the heads up.
Teresa,
I have not had a re-occurrence although the doctors remain concerned about that. Because I am also at a higher risk for pancreatic cancer, so I have an annual CT scan in hopes that we would catch either problem soon enough to deal with it proactively. I take 3 x 500 mg tabs of turmeric. I also take an anti-oxidant with vitamins A, C, and E. It also contains zinc, selenium, copper, and manganese. The list of minerals is extensive, so I will just say it is made by Solgar. I don't promote any brand of supplement, but you can find a list of those that doctors are comfortable with by googling the question. I prefer those manufactured in the US even though they are not dealt with by the FDA, the manufacturing process of a food substance is regulated in the states.
Back to the NET; by the time we got to removing mine, it had essentially caused the organ to begin eating itself (not scientific terms, but similar issue) and so I had a distal pancreatectomy and splenectomy to remove the tumor and it was benign.
Any more specific questions and I will give it my best shot.
Blessings, Gary
i
@gman007 Thanks, Gary. I appreciate the information. Have you ever had the 68Gallium scan? In the NET discussion group, there is a post about it. Teresa
Is this just a CT Scan done with contrast dye or something altogether different? If I have had one, it was not called that.
Gary
@gman007 No, this is more sophisticated than a CT scan or an MRI and is used to find NETs. Here is the link to take you to the explanation: https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
As NETs are difficult to find with traditional CT or MRI technology - this scan will find even very small NET cells. Teresa
Thanks Gary for your feed back. I am going to talk to the drs about the antioxidants.
Tina
@tnabs2008, Is your husband making any progress? What are his doctors saying?
Sending continued thoughts and prayers to the both of you,
Roemary
After posting my response, I did go and do some research and it sounds like a much more effective locator of NET's than a simple CT scan. My tumor that required the removal of much of my pancreas was not seen on a recent scan and was found by doctors who were going in endoscpically for a celiac plexus block and found the tumor once inside. I would appreciate the more precise findings of the 68gallium scan
@gman007 I understand - my NETs were also found endoscopically. Perhaps you should talk with your doctor/oncologist regarding the 68Gallium scan. There is one center in my state that has this diagnostic tool and as you can see from my post above, Mayo Clinic in Minnesota also has it available for NET patients. Teresa
There are three in NC and I live in upstate SC, so I could get to a center without too much trouble and will mention that to my GI in October. Thanks for the heads up.
@gman007 Sounds like a good plan! Let us know how it works out for you. Teresa