Mac

I have stage 3c Melanoma in my upper arm. I have been doing Opdivo infusion every 2 weeks since last October. I hate to complain, because compared to chemo it has been a breeze. But the breathing trouble started after maybe 3 treatments and has gotten worse, wth a couple of bad attacks, ever since. The fatigue is getting to me more and more, too. It doesn’t help that I live in 90-95 degrees temperature for some of June, most of July and some of August. I had been diagnosed with COPD more than ten years ago. I did use to smoke, but I quit 10 years ago and I really never had any shortness of breath or breathing trouble before. I have walked (out on a country road) for about 15 km at least 5 days a week, and many years I’ve done a workout on my stationery bike at least that much. This is getting harder and harder since Opdivo. I’ve had a few week long attacks where I can barely function and had to agree to go to a pulmonologist (I was hoping to deal with one thing at a time, haha). They had me on oxygen during treatment a couple of times. They said that with COPD , it gets worse over time and you have what is called “exacerbation”, a week attack of breathing difficulty. This seems to be being “exacerbated” by the Opdivo so there is no way to tell if it will get much better after treatment. or how much it will have added to lung damage that was caused by smoking. Last week they ordered oxygen for me at home. I will be glad to have it here because I am so afraid of having as bad a time as I did this winter and spring. I should have gone to the hospital then, but this will keep me from having to go, hopefully. They’ve given me an oximeter, but I won’t do oxygen when it gets low, only when it gets scary. I also have sudden, seemingly random epsodes where I wake up at night gasping. I know I smoked, I’m 67 , and a bit of shortness of breath is to be expected. But on your scale of 1-10 this went from 1 to hovering around 8 on your scale and times of my blood oxygen being 84……….ug. I feel so lucky in so many ways to be doing immuno instead of chemo, but this is tough. My doc has really helped me work around this and I only have 3 more months to go, so the end (of this) is near.

I go today for my 4th Opdivo infusion.  I think I would have missed some work since I started this, but I would still be working.  I am 66 and retired but I watch my grand daughters, 3 and 5 at their house.  They live 2 hours away so I spend a couple of nights a week there. I have missed exactly half of that time since diagnosis.  One of the hardest things for me is not being able to predict my schedule very well.  I've had a good 2 weeks since last infusion , but woke up this morning with a fever that is climbing. I see people at the Cancer Center getting chemo, not infusion, and I know how lucky I am.

I hoped to hear from him here and I'm glad it sounds positive

I hoped to hear from him here and I'm glad it sounds positive

Alone

I hope it goes easy for you, Mike. Your posts have made me feel less akone.

It sounds like you and I had a similar introduction to melanoma and similar initial reaction.  I had an ulcerated primary on my left arm. Insurance had kept me away from doc's and I hid it for a good while.  When they first said melanoma I thought I better get ready for the end.  It was a very few years ago that melanoma was a killer.  Now that I have been throw months of scans and surgeries and now Opdivo, I have calmed down.  There are times that I think about the bad possibilities and panic a bit.  BUT I'be had 5 months of very nice docs nurses, techs, advisors get me throw all of it. I have almost no pain, more like that discomfort and unpleasantness.  I have been reading this board for months, and just posted today.  Because, as much as I need reassurance, I have only an occurrence of all in cancer.  I've read on this board comments from folks d it a much tougher experience.