› Forums › General Melanoma Community › Symptoms after first Ipi/Nivo
- This topic has 8 replies, 5 voices, and was last updated 5 years, 4 months ago by
VinceMart.
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- December 11, 2018 at 9:57 pm
Hi all,
I’m just starting to get hit with side effects after my first dose of Ipi/Nivo and am hoping some of you can weigh in on whether or not you experienced anything similar. I also have a note into my oncologist but I haven’t heard back yet. I did seven monthly doses of Nivo and handled them very well, with minimal side effects so these new ones (although expected) are throwing me for a loop.
For the past few days I’ve been experiencing a low-grade fever (never over 100) and been cycling through chills when it hits and then several hours of intense sweating when it breaks. It’s been a little tough to manage. Has anyone else experienced this? Was there anything you found helped to manage these intense cycles?
Today, after having middle of the night chills pretty bad, I woke up with a pounding front of head headache, which now also includes a neck ache where my head hurts more when I move my neck. Anyone else experience this? Any thoughts on what it might be caused from? I’m trying to think that it’s only side effects but of course my brain is jumping all over the place with assumptions.
I also feel like I’ve been dealing with being endlessly thirsty and also having dry eyes. Not a big deal but I hadn’t read about this as a side effect. Maybe it’s cauaed by the sweating?
Any insight you all who have been in the Ipi/ Nivo battle can provide would be helpful.
Hugs to you all.
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- December 11, 2018 at 10:58 pm
Hi Amanda, I started ipi nivo last Monday, I did have sweats and low fever also but not since starting 8 Mg of decadon. I am taking that for the excruciating back pain I am having which they attribute to the multiple spine Mets I have. I do drink a lot of water, I mean a lot. Try Gatorade and a lot of water to help. Keep in touch, hope you get some relief soon
vince
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- December 12, 2018 at 1:23 am
Hey Vince, just wanted to chime in with an idea. My husband also has excrutiating back pain from spine mets (in fact it is sadly paralyzing him in one leg) but the pain has been substantially relieved with 1) an epidural injection of local steroids, and 2) methadone tablets (32mg every 8 hours).
If your pain isn't well-managed maybe you can ask about that! My husband had tried fentanyl patches and lidocaine via IV and that hadn't worked. The methadone and the steroid injection seem to be working pretty well, though.
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- December 17, 2018 at 10:28 pm
Thanks, I have been on steroids and am starting acupuncture tomorrow and meeting with pallative care after Christmas. I so just want to be able to give the Ipi/Nivo a shot, so I need to get through this pain to get to infusion #2 the day after Christmas. I have followed your posts and wish your husband all the best. I know it has been a rough time, but am keeping you both in my thoughts and prayers.
Vince
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- December 12, 2018 at 5:40 pm
Hi Vince! Im so sorry to hear of your excruciating pain but I’m glad you have something that helps! I don’t think i’ll Be moved into a steroid for what I’m dealing with, which is fine with me, but I’m happy to know there is someone else who was dealing with something similar. I’ll definitely keep in touch. It’s sounds like we’re on a pretty similar schedule, my first infusion of the combo was last Wednesday. I’ll be thinking of you these next couple of weeks and praying that we both get the results we so desperately want!
Take care!
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- December 13, 2018 at 10:55 pm
My husband had a horrible headache after his first or second ipi infusion, that was two years ago. We, too, went through all the worst possible scenarios, but what was really happening was he had developed severe hypophysitis, caused by ipi of course. He only found out before his fourth infusion, so he had to take cortisol supplements and he still does, probably for life. My advice is to visit an endocrinologist to make sure that your hormones are ok. Take care, I wish you the best
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- December 12, 2018 at 5:38 pm
While on the combo I ran fever for 6 weeks and it was the most horrible chills and sweating ever. I finally got it under control by taking motrin every 2 hours. If I went 2 1/2 hours I had to go through the chill sweat cycle. In august in south Texas I would sit in my truck during lunch at work with a heavy coat on with the heater running for an hour and still freezing. I would sit in my hot tub shivering. Self medicating worked for me. After 6 weeks it tapered off.
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- December 13, 2018 at 7:33 pm
Doing great. August was 1 year NED and nivo number 52(plus 5 ipi at the start). We decided to stop treatment and getting scans every 8 weeks for now. Scans on 11/29 were clean. Still experincing all the side effects, they have not tapered off. I would say if you are having side effects then your immune system is reacting. My second week the rash appeared on my arms and I was so happy.and was very lucky because I still have the rash on my arms and chest but it never burned or itched. Every couple of months or so I will have 1 spot that will itch and I will put the cream they prescribed me on it and it stops. The only thing with taking motrin every 2 hours is every couple of days you have to not take it and see if the fever returns and then if it does go through the cycle again and get back on the motrin. When my fever stopped it was over several days, might go a day or so without and it would come back, start motrin again for a day or so and repeat. I'm sure you will be different but even with 6 or 7 side effects at a time I always told myself my immune system was killing something and some had to be melanoma. I had 7 mets in my lungs and all were gone in 14 months. My primary was on my head but none in my brain even though I'm sure some melanoma cells went there but they looked around and said"oh hell no, we ain't staying up here. To much crazy stuff going on". I guess I'm saying I never let the side effects get me down, small price to pay to be alive.
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