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June 3, 2013 at 4:43 am #21329msue5Participant
I received my 1st dose of Yervoy on 4/22 and 2nd dose was on hold due to neuropathy and was on Prednisone. I started having inflammation in 1 node on rt neck that was already apparent on Pet but not even measurable. It is huge now(golf ball size). Then some more popped up and today 1 popped up overnight and is extremely painful. I’m getting 2nd infusion Tues and was wondering how long the inflammation period was and should it be so painful. I can not turn my head without having serious pain. I used ice which helped some but even Advil and pain medicine are not touching the pain. I’m trying to keep turning my head so I don’t get a stiff neck on top of it. I am just curious how long before this inflammation starts to go down? I will see Onc on Tues at infusion clinic but just wondered how others reaction was.
Mary SueJune 3, 2013 at 2:37 pm #61018erinmay22Participant
Hi Mary Sue –
I was wondering how you were feeling! I have heard some folks have lymph nodes pop up and swell while on ipi treatments.
Have you talked with your doctor about it yet? I think you’d probably want to let them know. Are you getting treatment tomorrow? I’d call them with a head’s up on it. I know some folks would have it swell for awhile but I never really experienced that.
Best of luck!
ErinJune 3, 2013 at 11:12 pm #61019msue5Participant
I am going tomorrow for 2nd Yervoy so the Dr can see it. I know its one of the side effects and was just wondering if it will increase with 2nd dose or start shrinking. It has been painless up till Sat bite when one of the already enlarged nodes became bigger and very painful. Also found a few new ones one right above rt clavicle. There is swelling above my clavicle and entire rt side of neck is swollen but this one particular node seems to be the only painful one. I’m noticing when its painful I tense my neck up and probably am causing more pain and stiffness. Just hoping dose 2 won’t increase swelling and would like to know peoples experience with inflammation and dose 2 of Yervoy. Don’t know how long I can put up with this pain. Its even giving me a minor earache and slight rt sided headache. I haven’t had an ocular migraine in 2 days and suddenly my hair stopped thinning. It had to have been the Z still in my system and I had been off that for 6 wks at least. I actually like my hair now! I used to get it thinned out and now its great! Just looking for the silver lining in this. So if anyone can shed light on the swelling I would love to hear from you. How are things going Erin on the PD-1 trial?. I was dissappointed it might be 2 yrs for approval since no immunotherapy Trials for me due to Lupus. My next plan will be Braf/MEK but I hope to buy some more time with Yervoy or maybe I’ll be a true responder.
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