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January 12, 2013 at 11:06 am #20929
So, because I am on a maintenance dose of Yervoy…I could not get a flu shot…oh yeah…you can guess the rest. I have been down with the flu since Thursday and have not been this sick since I was a child. Just wanted to throw that out there to people who are currently receiving treatment…the flu is almost impossible to avoid..but I think in the future, during an epidemic..I may take stricter measures to avoid the general public. I never want to feel this badly again
MarthaJanuary 12, 2013 at 12:46 pm #58540lak1Participant
Martha can I ask what maintenance therapy consists of what dose mg/kg and how often. How long has this gone on for are you disease free? How bad were your toxicities?
LesleyJanuary 12, 2013 at 1:15 pm #58541Catherine PooleKeymaster
Hope you feel better soon Martha! I have met more folks who HAD the flu shot but still got the flu this year, so they chose the wrong strain to innoculate for. Also, there is a stomach flu going around that is different from the real flu. But there is a large number of folks down with it. Be sure to rest a lot as it can turn into pneumonia. I hope it passes soon and you should probably check in with your doctor.January 12, 2013 at 2:27 pm #58542 Lesley,
My last dose of ipi was July of 2011 with five rounds of high dose radiation. I have not had any new lesions since and I have had diminishment in existing lesions.I have never been NED, but pretty stable for the past four years. My melanoma have all been sub-q’s. From July 2011 until now…I have had what’s called ipi flares…a lesion will get red, swollen and painful and within a week’s time, the lesion will disappear. So we knew I was still responding. When my oncologist suggested another round this past fall (which was delayed due to Hurricane Sandy, NYU was decimated and some areas are still closed) I was skeptical…but after much discussion we moved forward with another five doses of radiation and the usual 4 doses 3mg/1kg and after the first round I did end up with pseudo hepatitis. I have been on dexamethasone for the past month and when I returned last Wednesday for round two all liver functions were back to normal. So it may take a little extra time to get all four doses in (which would be my preference) and then I will be scanned sometime early spring. Works for me as I am a nontradtional college student…which translates into I am older student
, but I was pursuing my education when I was diagnosed back in ’09 so I am very focused on walking across that stage on May 30th and finally getting my two year degree.
MarthaJanuary 12, 2013 at 2:34 pm #58543
I am feeling better, my team at NYU were very quick to respond with Tamiflu and some “kick butt” cough syrup. I agree about the possibility of pneumonia…when I cough, I feel like my trachea is about to explode (not good considering I have been working a lot playing out). I actually thought I might have pertussis because of the wheezing. Wa…wa…wa…
I guess the logic of no flu shot with ipi is because of the possibility of overstimulating the immune system…but next year I will really be more careful about public exposure whenever possible. My husband and I were in the ER last Friday night because of a family member…guess that’s not the best place to be during flu season.
I am on the upswing though..a couple more days and I should be as good as new
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