Hukill

Very early on the ipi/nivo combo I developed vitiligo and 4 years later still slowly spreading. These were some reports about patients who developed vitiligo were I think 3 times less likely for melanoma to return. So I have never been upset with being spotted.

May I ask what treatment you had?

Mike, it has been a few months since I have been on here but often think of you and how you are doing. You are one tough man.

Yay!!!!!!

I had 5 combos, miscommunication between dr and pharmacist, should have had 4, then 52 nivos. I was almost done when they switched to a double dose every 4 weeks. I had 7 tumors in my lungs, no progression and was NED at 13 months. I had no new side effects after the combo but most I had during the combo I still have today almost 4 years later but small price to pay for life. The worse side effect for me is the fatigue mixed with insomnia, dead tired but can’t sleep and have been given all the prescription sleep meds. It knocked my thyroid out also and tried different doses of meds to try to kick in my metabolism but it didn’t help. In the last year I have had 2 melanomas removed from other areas but were not deep enough to warrant going back on nivo. I still get scans every 3 months.It sounds like you are responding very well. These are the side effects I still have, fatigue, insomnia, rash(but it never itched, just will not go away), thyroid meds, vitiligo which is still slowing spreading, while on the combo I went 7 weeks with no saliva and about 1 – 2 times a week my mouth just goes dry for several hours and joint pain. I am 60 and some of this may be to just being old but I am still able to work full time.

First let me say that I never understand why someone with metastic melanoma would worry about side effects from a drug when compared to not taking the drug. In 2016 I had 7 tumors in my lungs and was offered opdivo/yervoy as really my only choice. I never worried about side effects as I just wanted it to work, side effects was a small price to pay for living. The side effects started the second week after my first combo, was so happy to see the rash appear as I knew my immune system was reacting in some form. Over the next 26 months I had 5 yervoy and 52 opdivo treatments which resulted in 7 different side effects. Some were worse than others but I was able to still work full time, had responsibilities to take care of. I have been NED since August 2017. I still deal with 5 side effects everyday and 1 that comes and goes several times a week. For me the side effects eased up after stopping the yervoy. I also think those with a higher dose of yervoy seem to have more severe side effects but we all react differently. I never had to miss a treatment or stop due to side effects.

My last treatment was August 2018 and I still have 4 side effects.

I had 5 combos and 52 opdivo. I always got my treatments on Friday so as by Monday I would be ok for work especially after the combos. It may kick your butt or not effect you much at all. I would ensure to have plenty of food and things for the kids so you don’t have to go to the store in case it hits hard. I think I missed the Monday after my first but worked the rest of the week. While on the combo I think I missed 1 day of work each week. A 2 & 3 year old I’m sure are a handful. Hopefully you have someone who can stop by if you need them.

My last nivo was August of 2018 and have had ct scans every 3 months. It was my choice to stop nivo after 1 year of NED. My sister works at a cancer treatment center and they keep their patients on nivo after NED until their body can;t handle it anymore. Of course it is a private center so they are out to make money. My treatment has been through the VA so they are trying to save money. My last scans were 2 weeks ago and my dr said this would be a life long thing.

I think 2 years is normal but you will find stories on here where some only received 2 combos before their immune system wrecked havoc on other parts of their bodies and those 2 combos were enough to do the job. I am not a dr but if her immune system is still causing problems elsewhere I would think it would still be attacking the melanoma also. I stayed on nivo a year after I was NED for a total of 26 months and 5 combo and 52 nivo. I did have 7 different side effects but none severe enough to stop treatment or get steroids.

Forgot, been NED since 08/2017.

I continued for 12 months after NED and then stopped. After several months had my port removed so I didn’t have to go get it flushed. My Dr says data is starting to show really do difference in continuing or stopping treatment after NED. Of course this was the VA who tries to save money. My sister works for a cancer treatment center and she says they keep their patients on treatment until they can’t handle it anymore. Of course they are a business out to make money. So, I had 5 combos and 52 opdivos over 26 months. I was NED at 14 months but did 1 year of maintenance.

I had about 7 side effects at the same time until after the combo then some went away. When I got the side effects I was extremely happy I looked at it like this. If my immune system is wrecking havoc on other parts of my body imagine what it is doing to the melanoma. I know they suck and I still worked a full time job but side effects is a small price to pay for living. After the combos some will go away.

Only thing that almost delayed a treatment for me was low potassium which I have been on prescription potassium now for almost 3 years also.

It knock my thyroid out also, never any discussion about missing a treatment. Was put on medication for it, 3 years later still on them.