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April 13, 2013 at 1:31 pm #21187Laurielala55Participant
My husband has been in the PD-1 trial at Sloan since October. He just had another CAT yesterday and there aren’t any new areas (Hurrah!) and the lesions in his liver and spleen are smaller/decreasing. He does have lesions on his spine in various locations. Those in his cervical spine are smaller and one area of concern in his thoracic spine is causing him considerable pain. The team at Sloan is working on a way to address that lesion without radiation as radiation will eliminate him from the study. We surely don’t want that to happen if at all possible.The drug is continuing to work! So, I just wanted to report the good news. I rely on this forum to get me through and I am always excited to hear good news from others…..my wish is to give hope to others by passing on this positive news!
Hope it’s sunny and warm wherever you are…..cant’ say that for the good old northeast today!April 13, 2013 at 3:14 pm #60058Catherine PooleKeymaster
Thank you so much for sharing! Sounds very good indeed. I’m in the Northeast and it is sunny and lovely! Hope things continue on a good path for you and your husband.April 14, 2013 at 1:09 am #60059Shirley ZParticipant Hi,
Happy to hear the good news about your husband. I hope they are able to find a solution to ease the pain in his spine. Wishing you continued success with the trial.
Shirley ZApril 14, 2013 at 11:37 pm #60060erinmay22Participant
Hey – so glad to hear the good news about your husband. I am currently doing the Merk pd1 trial at Sloan Kettering also.
I just had my 12 week scan on Friday – getting results tomorrow. I am very nervous!! What type of side effects has your husband had? Which doctors are you seeing there?
ErinApril 15, 2013 at 3:21 am #60061Laurielala55Participant
So far the side effects have been minimal. He had a rash after the third infusion that lasted about three days. Fortunately it did not itch and didn’t require any treatment. Last month he had a case of iritis in both eyes that responded to treatment. They are sure it was related to the drug which prompted a call to Merck. He has complained of fatigue on and off. He has had two procedures on his back. One unrelated to the melanoma and the other to stabilize the compression fractures that were caused by lesions which were smaller and therefore able to be fixed. If he didn’t have back pain he would feel pretty good! The doctors at Sloan are discussing how to address the area that is causing his pain. Radiation will eliminate him from the trial even though it would be a small targeted area. He sees Drs.Wolchock, Lesokin and Seigel. My favorite is the young Dr. Postow (Wolchock’s fellow).Cute with a capital C! Best of luck with the scan results…..sending positive vibes your way!April 16, 2013 at 8:21 pm #60062erinmay22Participant
Hi Laurie –
Glad to hear side effects have been minimal. I seem to get some itching and always seem to be red. Not sure that makes much sense
Just flushed skin… but no real rash that starts. Looked like earlier today I was starting to break out but that went away.
I did notice I’m always dehydrated (or at least I feel like I can never drink enough!). I also noticed an increase in ocular migraines since starting pd1. Maybe it’s stress, dehydration, ipi/pd1? who knows. Good news was that brain was all clear so that is a relief.
I asked to see Dr W but since I started on Mondays for treatment I can’t see him. He only see’s patients on Thursdays. Dr Seagal was who I met with originally to get in the trial. I think I see him end of May finally again (met with him Jan 8th). I’ve seen Dr Rizvi the most and once saw Dr Konner. I do not know this Dr Postow
Hopefully they can figure out what to do to help your husband with the pain! I didn’t realize that radiation would eliminate him from the trial… never a dull moment!
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