My sister is fine now, getting strength back, etc. That’s important to know before you read the rest. Also, PM me if you want more info. I’m sure my sister would also be happy to talk to you and your husband.
About a year ago my sister was diagnosed with melanoma (stage 3 I think). They did surgery initially to remove the tumor, and she has had a couple of additional plastic surgeries to fix the graft area, etc. (the tumor was on her face, and they took a section about as big as two closed fists from her face; from her arm, they took an artery and skin to graft on her face; and from her leg, skin to graft on her arm when the cadaver skin didn’t take).
Before the surgery, while she was considering treatment, she visited about three or four doctors (oncologists) at UCLA, two at USC, and a third who has his own clinic (we’ll call the last guy the quack). The UCLA and USC docs, all of who are considered pretty tops in melanoma, agreed surgery plus interferon. The quack suggested traditional chemo to shrink the tumor, then surgery and interferon. After doing all her research, she picked a UCLA doc to oversee the interferon, and then found a plastic surgeon to do the surgery.
She did interferon 5x/week for a month and began her 11 month 3x/week interferon, but could only sustain it for three months before she had to quit. I’ll talk about the side effects in a minute, but if you press the doctors on this issue, they will agree that (a) all the studies on interferon look either at the 1 month intensive plus 11 months half dose, or at the 1 month intensive alone; (b) only one study looks at the 11 months half dose interferon as a stand alone; © that study (I think it’s New Zealand) has some flaws (small sample size, for one), but shows that there isn’t any benefit from the additional 11 months. Which is to say that the first month of treatment is what gives you the most protective benefit.
Side effects from interferon that she had: exhaustion, loss of strength, extreme fatigue, diarrhea, nausea, migraines, lack of appetite, metallic taste, depression, hair loss. There may be more I’ve forgotten.
A typical day with interferon treatment: up at 8, have breakfast. Do some chores, leave for the clinic at 10. Treatment takes about 45-60 minutes, unless she needed hydration or asked for Ativan. She found the infusion so unpleasant that they started giving her a bit of ativan to help her rest. So, done around 1130 or 12. If she had some strength, we’d stop by a store on the way home or go out to lunch. If not, home for lunch. She had about an hour and a half after treatment ended before the diarrhea kicked in, and the nausea started before that. Go home, in bed by about 2, sleep till about 7, have dinner and drink water, bed at 8:30 or 9.
The first week or week and a half of treatment, she was doing a bit better than that. But by week 2, she couldn’t walk up a flight of stairs without stopping, completely out of breath, halfway up.
She quit interferon after three months, around Christmas, and now, six months later, she is getting almost all her strength back. Before all this, she was very active and healthy, typically working out an hour or two a day. She says she still can’t run more than a mile, but she’s getting it back.
The docs will tell you that you can work during interferon treatment; I’ll say maybe. I’ll also say that you should get the handicapped placard for the car ASAP, and consider getting a wheelchair after a couple weeks. She was depressed cooped up in the house, but couldn’t manage the walk from the parking lot to a store. So with the wheelchair, I could take her and her daughter to the mall, and she had an afternoon out without completely killing her energy.
ETA: find a cancer support group that welcomes caregivers. It will be a place for you to break down with people who totally get you. My regret was that I only went when I drove her, so I kept my mouth shut so as to be positive for her.
