Anyone have paraganglioma?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Welcome to Connect, @jls77, aka Tabatha, and thanks for raising a very important and vexing question for discussion now! Do I have paraganglioma? Maybe (on this basis):
Paragangliomas are a class of tumors that occur in different places in the body. If one occurs in the adrenal gland on the kidney, it is known as a pheochromocytoma. I have a tumor in one of my adrenal glands, and the first suspicion of my nephrologist was a pheochromocytoma, so she engaged an endocrinologist to help with laboratory tests needed for a diagnosis. After thorough testing, they found no evidence 1) that the tumor is malignant or 2) that the tumor was producing excess adrenalin (epinephrine) or other catecholamines that would account for my high blood pressure. So for now, my medical team is content to simply keep the tumor and my blood tests under regular observation. But my hypertension remains!
However, it is important to realize that any paraganglioma located anywhere in the body might be a rogue gland pumping catecholamines into the system and either causing — or appearing to cause — serious illnesses. For more information, check out this reference from the National Cancer Institute: https://www.cancer.gov/types/pheochromocytoma/patient/pheochromocytoma-treatment-pdq.
Mayo Clinic is (for my money) the best place in the world to take your concern. In fact, one of our best known Connect members is Dawn Gacabiazi, @dawn_giacabazi, who will be at the Mayo Clinic in Rochester in the very near future for treatment of what she thinks might be a pheochromocytoma. When Dawn is able to join us in this discussion, I know we can learn a lot from her.
Tabatha, I noticed that your question was prompted by a diagnosis of your husband’s condition. You also appear to be hoping that Mayo Clinic might give a second opinion and, if necessary, new treatments for him. Would you feel comfortable telling us more about his symptoms and his prior experience with the medical team that has diagnosed paraganglioma and treated him? For example, where is the tumor located and how long has it been under observation and treatment? What kind of “chemo/poison treatments” has he received, and why do you think they should be halted?
Also let us know what we can do that would be most helpful to you and your husband. We’ll be awaiting any message you wish to send us.
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When my husband Joe was diagnosed it was already metastasized throughout his body. That first year they did a treatment called MIBG, it’s liquid radiation that’s injected and travels to attack all the tumors. He was good until Oct. 2016 and the cancer became active again. It took forever, literally months for them to come up with something to do which in the mean time landed him in the hospital 2x’s in 2 month spand. The tumors in his liver were the ones that grew a little that were stretching the lining of the liver causing unbearable pain. They started him on a drug called sutent. Took that for a few months, then they changed to intervenors chemo. I honestly forget the names of them. It was suppose to be 3 different drugs 2 days, every three weeks. Well that mad him so sick he never did the second day, cut back 30% of all the drugs and after the second treatment they stopped one of the drugs. He go t 5 treatments, and here we are. He doesn’t want anymore poison treatments. We want to know what other treatments they offer before flying down there. A dr.’s name that deals with this disease would be great. I would like to send down his records for review before flying down. Does anyone know if they do that?
Sending records in advance sounds like a good plan. I’m not sure how that could be done, but our Director of Connect, @colleenyoung, might be able to assist in this process.
If I understand correctly, your husband is not yet a patient at Mayo Clinic, correct? To find out more about care options available at Mayo Clinic specific to your husband, the first step is to contact Mayo Clinic either online or by phone. Please use the contact information on this form to get things started http://mayocl.in/1mtmR63. Our oncology experts can review your husband’s medical history and test results etc., and provide an evaluation prior to traveling.
The Cancer Center at Mayo Clinic is one of the largest, most comprehensive cancer diagnosis and treatment programs in the world. Mayo Clinic cancer specialists collaborate with experts in all other departments to provide coordinated and integrated, multidisciplinary care to people with cancer. See the departments and specialties who treat paraganglioma, a rare type of neuroendocrine tumor, here https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/doctors-departments/ddc-20354134
I hope this helps provide direction and more information for making an informed decision. Don’t hesitate to ask questions.
Martin, sorry if it a bit pass-due question. Is your high blood pressure episodic or is it always high?
I have had my blood pressure as high as 245 over 187. Next day it goes down to normal. No set interval, sometimes little higher than normal, sometimes a lot. I have been diagnosed with Carotid Paraganglioma, non-functioning. My concerns is that 24 hrs using or other tests were done when gland was not pumping extra hormones. I do not know what triggers them.
Thank you in advance. Sorry for the late question.
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