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October 25, 2012 at 1:09 am #20707msue5Participant
Yesterday I had a mediastinoscopy after my Vats Surgery failed to visualize the enlarged node that showed up on 2 Pet Scans. It turned out to be a matted cluster of several enlarged nodes attached to my aorta. The surgeon had to cut the nodes apart to get them out and there may have been some left on my aorta. My husband was the one to get the update and I’m not sure he heard much after the surgeon said this was worse than I expected. He told him he had no doubt that it was melanoma mets although I’m not sure how he came to that conclusion. Discussions prior to surgery with my reg Onc and Onc at Melanoma Center came to the conclusion that I would start Ipi if there was any question about residual melanoma. We have to wait for pathology obviously. I have lupus ( no organ involvement). My Rheumatologist and both Oncs say I would obviously have to treat melanoma over lupus. Catherine I was wondering if your Scientific Board has any info on how Ipi will affect my Lupus. I went off all my immunosuppresants when I reached Stage 3. I currently have about 4 flareups a year that involve extremely painful joints in my hands and feet and major fatigue. They last about a month to 6 weeks. I am braf neg and will never get in a trial due to my Lupus. Have they ever done any trials with autoimmune patients?October 25, 2012 at 12:19 pm #57112Catherine PooleKeymaster Sorry to hear about all you are going through. I did contact our scientific folks and there isn’t really any information on lupus and Yervoy (IPI) since patients with Lupus were excluded from the clinical trials with Yervoy. It is an issue to discuss with the doctor and maybe a second opinon? Have you thought about another opinion maybe at Hopkins? I believe you are in D.C.? This is pretty complicated and needs some melanoma experts to weigh in. Sorry I can’t be more definitive.October 26, 2012 at 5:42 am #57113abdormaParticipant Hi Mary Sue,
I have followed your story on this forum and have admired your courage and resolve in fighting melanoma while dealing with lupus. I am sorry for all the challenges you have faced. I am writing simply to wish you well in your very complicated treatment choices.
My husband started with Stage III melanoma but he had two mets last January (a tumor in lung and lymph node near pulmonary artery. Like your husband, I had a surgeon tell me he was sure that the lymph node he removed was melanoma even though there was no pathology report. I asked him how he could tell it was melanoma and he said healthy lymph nodes are pink and soft and pliable when probed. He said diseased lymph nodes were grey in color and hard as a rock. Sure enough when the pathologist report came in, the lymph node was full of melanoma.
Wishing you nothing but the best and hoping you will be able to take advantage of Yervoy. Keep up your fabulous spirit!
AnnOctober 26, 2012 at 7:07 pm #57114krissy424Participant
So sorry to read your melanoma has taken a complicated turn.
Stay strong! You can beat this!
KrisOctober 29, 2012 at 12:03 am #57115Shirley ZParticipant
I’m so very sorry to hear this. Your strength through all of this is just unbelieveable. You are such a giving person and it just seems so unfair that you have been dealt yet another blow.
My prayers are with you as always for strength and healing.
Shirley ZOctober 29, 2012 at 5:09 pm #57116msue5Participant
Thanks everyone for thinking of me. The oncologist ccalled the hospital this am and said the pathology was still not signed off on and therefore can’t get results. So frustrating waiting. I might still get an answer today but who knows with the hurricane. We are really seeing an increase in winds and rain in the last hour. We are about 40 miles from D.C. and expect things to get much worse as the day goes on. Stay safe everyone who is in the path of Sandy!
Mary SueOctober 29, 2012 at 5:47 pm #57117LinnyParticipant
Oh my goodness. You’ve been through so much with all these surgeries and now this.
I wonder why they would not have signed off on the pathology yet. Unless the “signer” has yet to make it into work because of the weather?
Since you are in the DC area, you have a number of good hospitals you can head to for second and third opinions. Someone in one of those facilities has to have an answer for you.
You are a model of strength, Mary Sue. I complete agree with Shirley’s comment.
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