how many nivo/ipi treatments have you had and how do you feel

Posted By
Hukill
1/3/2018 10:38am
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Replies: 3

I have had 5 combo doses and 27 nivo maintanance doses and would like to know how you feel if you have had around the same number. I have severe fatigue, salavi gland issues that come and go after each dose, joint soreness, still have the rash but no itching or burning, still on thyriod meds and have to take prescription potassium supplements and vitiligo that continues to slowly spread. My last 2 scans have been NED and my dr wants to continue treatment for 9 more months.which will make treatment total 2 years and 3 months.

You have 5 combo treatments? It's good you got to have that many. I thought usually 4 were scheduled, i only received 3 until liver panel was too high.  Then on Prednisone since August and finally off of it now that liver panel is in normal range.  Just had my first Opdivio yesterday.  From what I am reading the rashes might come back?  You have been on Opdivo for two years?  Is it every other week?  How strong? I am being started on 1mg to see how my body tolerates it.  I was on 1mg with the combo (with Yervoy .) 

Sharon

The fifth combo was a mistake between my oncologist and pharmacist with the oncologist being wrong. Started treatment in 06/2016 and started maintanance in 12/2017. 20 months total with 13 months just opdivo. My treatments are every 2 weeks. All my side effects started while on the combo and I still have all but 1 while on opdivo.

I did 4 combo and have been on Opdivo for 23 infusions. I too experience some itching, joint soreness and vitiligo. Also lost my thyroid and pituitary a year ago.  Sounds like we are on the same journey. My last two scans are almost clean and I’m continuing with infusions for at least another year.  The drug is working and I feel better than ever even with some of the minor side effects.  I feel so fortunate that Opdivo is working for me and helping me to be a survivor.  One thing that has helped with the muscle joint pain is medical cannabis cream (a medicated massage cream).  Good luck.  

Linda