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Jan 19, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

@gaylejean – My husband has not had it yet. Our Allentown LVH Cancer Institute is just preparing rooms to begin giving it. On his visit to his Oncologist last week he told him they expect to have it up and ready for April 2019. I like to be prepared ahead of time to what to look for. Not one for surprises anymore; the past 3 years have been full of shocks and surprises and I've had enough now.

Jan 19, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

@gaylejean Yes, I also get all cancer types. I don't think they have a way to separate the different cancers. At least it shows on the incoming mail what the subject is so I delete the ones that come in not dealing with NETS. I don't mind because I get informed about the NETS .

Jan 18, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

Thank you for sharing this. I watched it and so did my husband (the patient) It is always best to see what is around the corner and then it is less frightening.

Jan 17, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

Yes, I have been informed about PRRT, our Cancer Center in Allentown, PA is currently working on getting rooms ready for this treatment. Due to the extensive illness he had with 100 days in hospital ; mostly ICU, then rehab in the same building although separate from the hospital itself, he has renal failure at 28% currently. I don't know if he will be a candidate for the PRRT. I also wonder why it was administered in Europe for many years before the AMA approved it for the US, and they have stopped administering it in Europe now? Our Oncologist is not a specialist in NET but is connected with Salone Kettering in NYC and has a special interest in Carcinoid so we feel we are in good hands. We went to a Dr. Metz for a second opinion in Philadelphia and left there feeling like a lab rat. The doctor barely looked at my husband, had his head in the computer all the time we were there asking him questions, like he was ready to use his information for his next publication.

Jan 17, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

Thank you, I did search the list of Cancers but did not find any listed on this subject.

Jan 17, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

2016 my husband lost his colon and part of his small intestine following an colonoscopy. He now has an ileostomy which makes treating the cancer more difficult as he can not have any abdominal surgery anymore. He was on life support at least 2 months and spent a month in rehab learning how to walk, and regain some muscle. I never thought he would walk again, but he is. It is a slow cancer but it spread to his liver and he now has 7 tumors on his liver. There is no treatment to fight the cancer, only sandostatin to control the symptoms. Anyone know anything on the horizon to rid of us this terrible terror of pending unknown trouble.

Mar 14, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Thank you very much for you reply. I should tell you this is Paul, Sharons husband. Sharon found this site and wrote for me as I am the one who is ill and she is the caregiver. I have found some great points in reading your post. This truly a journey that I never expected to experience. thank you once again. I would suggest that forget the fear and do not let it control your life. it is obvious that you are a believer as we are and would say to put it in gods hand and breathe.. When I was at my worst and the doctors wanted to remove lifesupport Sharon told god she needed help and put me in his hands.

Feb 22, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Very likely, yes I have thought about that an awful lot. I do have a 44 year old daughter who was born with redness on her hands and feet and I wonder if that is something I passed on to her because of Nam. I understand the VA is currently evaluating and possibly adding some more medical issures related to Agent Orange-however, carcinoid is not one they have put on that list. I was directly exposed to the point of saturation at least twice during my tour and left with no way to wash or even take what little clothes I had on – off. It was hot there !