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September 23, 2013 at 8:46 pm #21591msue5Participant
Its been a while since I updated and I have a few questions. I started Yervoy 4/22 and finished 7/31. I had 2 delays for some neuro symptoms treated with Prednisone. I barely made the 16 wks allotted 4 doses of Yervoy. My reaction to Yervoy was over the top (maybe my Lupus?). All the nodes in both rt and lt neck swelled so much it was affecting my swallowing. A CT of the neck showed enlarged conglomerations on both sides of neck some as large as 9cm. It was known that I had a slightly enlarged node at rt cervical 2b. That and regrowth of thoracic nodes was also known. I also had an enlarged groin node and slightly enlarged rt axillary node.I had this PET done mid Feb 6 wk post Cyberknife to thoracic nodes. It took a long time for all the Dr’s to finally decide that I shoud try Yervoy due to my lupus. My neck really started swelling after 2nd infusion and just kept getting bigger and it was decided I had to have Radiation because CT showed swelling next to Carotid artery and vena cava. I was unable to swallow well and choked on liquids multiple times a day.Radiation for 20 treatments reduced them a lot and my symptoms went away. But my axillary node and groin node also decreased and they were not radiated. Now 6 wks post Yervoy and 4 wks post Radiation my I had a PET done early due to vital stuctures being involved. PET showed head and neck clear, thoracic nodes normal but 5 nodes in the rt pelvic iliac chain are slightly enlarged. Those could have been there prior to Yervoy and are actually smaller now. Now my rt neck is starting to swell with some pain so now I’m nervous the radiation and Yervoy not working anymore. Questions are did anybody’s reaction to Yervoy wax and wane,was my neck swelling all due to microscopic disease reacting to Yervoy and maybe radiation took away swelling and it will return to the huge painful masses from Yervoy. My Dr has been in constant touch with BMS. They call him every week to talk about my progress and want to see my PET results. He is going to inquire about 12 wk maintenece infusions. So anybody who has had Yervoy with results like mine I would love to hear from you. Sorry so long but its complicated. Hope everyone is doing as well as can be and trying to do things that bring you happiness. Since Yervoy over 2 trips and have 2 more coming up. Celebrating our 36th anniversary by going to Kiawah Island in S.C.
Mary SueSeptember 25, 2013 at 11:15 pm #62574Catherine PooleKeymaster
Mary Sue, I’m sorry I have no answers to your questions. I did want to wish you a fun trip and to keep on having a great time! Maybe someone else has had your experience.
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