› Forums › General Melanoma Community › Keeping Track of Side Effects
- This topic has 6 replies, 2 voices, and was last updated 9 years, 6 months ago by
kylez.
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- October 6, 2014 at 12:12 pm
Recap: My last treatment (Nivo/IPI) was withheld based on scans which indicated some growing unknown in my lungs…I have melanoma there (and pretty much everywhere else), but it has been stable for about a year and a half. There were a number of possibilities — with the most likely being a cumulative reaction to the drugs (but the rearing head of melanoma not ruled out)
Resolve
Seems after an interim scan the docs are confident I have been reacting to the NIvo. This seems to have been bolstered by the inflammation of my joints which was becoming extreme by the time I stumbled into the office for the verdict/checkup. The reaction in the lungs seems to have hit its high water mark already and the joint inflammation is being dealt first with Aleve and if necessary steroids. ( whether I get my final treatment, scheduled in six weeks is up in the air).
If there is something to be learned by the community here, it may be that pneumonitis and joint inflammation are beginning to be seen as "classic" symptoms of Nivo taken over time. I was told of a number of instances, including someone who had never reacted to the drugs until the last treatment, and then had a fairly extreme reaction requiring hospitalization. There's a lot of experience in the facility where I am treated so this is good to know about …. I've heard again and again that the Nivo is Ipi's benign cousin…. but it's a powerful drug nonetheless.
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- October 6, 2014 at 3:42 pm
Thanks for the info G-Samsa.
About 8 months ago I had a phone consult with a Dr. Reneker from San Francisco. He's a pretty interesting guy a very bright. During the conversation he recommended a supplement called NAC due to Anti-PD1's possible reaction in the lungs. I confess I haven't used it and by no means am endorsing it but you may want to do your own due diligence and see if it sounds worthwhile. Here's a link to one of many products for the supplement.
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- October 6, 2014 at 3:42 pm
Thanks for the info G-Samsa.
About 8 months ago I had a phone consult with a Dr. Reneker from San Francisco. He's a pretty interesting guy a very bright. During the conversation he recommended a supplement called NAC due to Anti-PD1's possible reaction in the lungs. I confess I haven't used it and by no means am endorsing it but you may want to do your own due diligence and see if it sounds worthwhile. Here's a link to one of many products for the supplement.
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- October 6, 2014 at 3:42 pm
Thanks for the info G-Samsa.
About 8 months ago I had a phone consult with a Dr. Reneker from San Francisco. He's a pretty interesting guy a very bright. During the conversation he recommended a supplement called NAC due to Anti-PD1's possible reaction in the lungs. I confess I haven't used it and by no means am endorsing it but you may want to do your own due diligence and see if it sounds worthwhile. Here's a link to one of many products for the supplement.
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- October 6, 2014 at 7:12 pm
For awhile I was having real issues walking, in both knees and one hip. sometimes i would wake up at night and my knee would be "stuck" with swelling. and other weirdnesses. jogging 100 feet to catch a bus would result in major walking issues the rest of the day, in addition to pain just with regular walking. in the scheme of things not a big deal but affected me for several months — i'd say 95% cleared up now.
lately i've been getting a hay fever attack after each nivo infusion — last 4 times — although that is calming down now too.
are you going to be able to resume nivo again? since your docs have decided you're responding, i sure hope so!!!
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- October 6, 2014 at 7:12 pm
For awhile I was having real issues walking, in both knees and one hip. sometimes i would wake up at night and my knee would be "stuck" with swelling. and other weirdnesses. jogging 100 feet to catch a bus would result in major walking issues the rest of the day, in addition to pain just with regular walking. in the scheme of things not a big deal but affected me for several months — i'd say 95% cleared up now.
lately i've been getting a hay fever attack after each nivo infusion — last 4 times — although that is calming down now too.
are you going to be able to resume nivo again? since your docs have decided you're responding, i sure hope so!!!
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- October 6, 2014 at 7:12 pm
For awhile I was having real issues walking, in both knees and one hip. sometimes i would wake up at night and my knee would be "stuck" with swelling. and other weirdnesses. jogging 100 feet to catch a bus would result in major walking issues the rest of the day, in addition to pain just with regular walking. in the scheme of things not a big deal but affected me for several months — i'd say 95% cleared up now.
lately i've been getting a hay fever attack after each nivo infusion — last 4 times — although that is calming down now too.
are you going to be able to resume nivo again? since your docs have decided you're responding, i sure hope so!!!
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