at least one insurance company cover off label usage
Since yahoo doesn't allow links, I am going to copy and paste one. Chris and Dena both are fighting Renal cancer. You can search their names and read the articles.
Dena Battle • 7 days ago
For those who asked, we are getting the drug off-label and our insurance is covering it. But we did have to deal with an initial denial and appeal process. So, it is possible, we just want folks to know that it's not a guarantee and that you may have out of pocket costs.
Anyway, fire CEO and CFO.
Great find Stocklooking...
One of the most recent blog entries is very encouraging and for the people who don't do the search Stocklooking suggested, here is the entry:
On the morning of one of the more dreary days of early last week I walked into the den and saw my teakettle sitting cold on the armchair table. I looked for the hot steam drifting upwards from the spout and could find no evidence of warmth emanating into the morning’s cold air. Through the window I could see that the sky was the color of aged steel. There were still some lingering light patches of snow on the ground. I turned on a lamp to chase out the gloom and realized then that neither did I smell eggs. Or biscuits baking in the oven. Not even cinnamon rolls. Something was amiss. Wrong, terribly wrong. What foul side effects of Cabo had descended upon me? Mental confusion? Hallucinations? Where the hell was my newspaper? Panic.
So I did what any mature man would do in such a time of crisis and called my mom.
Tealess, warmthless, I sat in my cold chair, the colder receiver of the phone against my ear, wrapped in a blanket and listened – patiently, I like to think – for a minute or two while my mother talked about her morning round of tennis in Savannah. She had just returned home yesterday, after a few months of staying with us and helping with the house and kids – and me – while I was going through some difficult months with the cancer. She had been back in her southern clime for less than a day, and instead of mourning the distance that separated her from her child she had spent the morning with friends out in the blazing sunlight whacking a little fuzzy yellow ball across a net. The temperature was in the seventies, she informed me. This was too much. Did she have no feelings at all?
“Mom,” I interrupted her, “I had to fix my own breakfast this morning.”
My mother had come up in the late fall when my health was deteriorating. If there is not already a saint for caregivers, I think I’
My mother had come up in the late fall when my health was deteriorating. If there is not already a saint for caregivers, I think I’ll put her name in. Whenever there has been somebody sick among our family or friends, she has gone to them. From the moment I was diagnosed, she’s been at my side. She was at Duke for every IL-2 treatment, stayed in the guest house at the NIH during the IL-15 trial, and has been at our house weeks at a time. The weeks turned more permanent as my health deteriorated with winter’s onset. And after our stay in the hospital in January, when things looked particularly bleak, my dad came up to join her here in Alexandria.
Only three weeks after taking a sabbatical from his job and shutting down the house in Savannah, however, my poor dad was heading back home. He had expected to be here for longer as my health either deteriorated further or, more hopefully, began to gradually revive. Unexpected by anybody, though, my health underwent a startling reversal only a week after starting Cometriq (Cabo). Considering this, I think he was okay with the inconvenience.
A month ago, we weren’t sure whether I would live or die. Tied to IV and oxygen lines in a dreary hospital room, I listened as Dr. Hammers proposed an emergency chemotherapy round to possibly buy me a couple of weeks as a “bridge” until the Cabo surfaced on the market. Even the Cabo – considering my luck with previous treatment regimens – seemed a long shot. Today I’m moving freely about the house on my own, facing new challenges of returning to a more normal routine. A month ago simply walking up the stairs was enough exertion to force me to sit down and catch my breath – often requiring oxygen. Today I’m running up and down the stairs all day long. I hadn’t driven in months. In fact, Dena has stolen my car and left me with the minivan. Yeah, as if facing mortality weren’t enough … but a minvan? Yesterday, I got dressed and drove down to the local coffee shop. Admittedly, still in the minivan … but we’re making progress. Today I went out to a long lunch with a friend. I do not need oxygen now, at any time. I can sleep through the night, and I have energy through the day. When I breathe deeply, I don’t feel my lungs crush in on me. I can hold conversations without breaking down in coughing jags. I don’t vomit every morning. I’m not losing weight; indeed, I’m gaining weight, having put on nearly ten pounds since the first of January. I’m not going to pretend that my health is strong yet, not yet –but it’s getting stronger each week and is, I believe, on a steadily upward trajectory.
In other words, my parents were able to go back to Savannah because I’m strong enough to manage without additional help. A month ago, nobody expected this. The turnaround has been astonishing. A miracle, in the true sense of the word. Your prayers have been working.(Keep them coming.)
Cabo is supposed to be a pretty toxic drug, but I have managed the side effects well. Fatigue was especially strong for a while but it has lessened as my body has adapted to the drug. Nausea hits pretty hard in the mornings after I first awake, but Zofran and Compazine usually work well enough and it fades by late morning. I get some skullrattling headaches on occasion, and there’s some hand-foot syndrome challenges similar to what I had with Sutent and Inlyta. All in all, though, the side effects have not been too bad.
I won’t undergo another CT scan for another month, so I can’t know for sure whether the mets in my lungs are continuing to shrink. But my body can feel a clinical difference. This isn’t subjective; there’s no disputing the physical change between now and early January. The real questions are: First, to what degree is the drug having an effect – are the tumors continuing to shrink, and by how much? Second, how long will the drug work?
For the first time in a long while I’m anxious about getting a CT scan. I’ve received disappointing scan results for so long that at some point I quit worrying about them. Now, I worry again. Will the next scan confirm what I’m feeling physically? Will it showed continued results? I haven’t worried in a long time, and it feels good to have even the simple opportunity to worry. It means there’s hope – which, a month or so ago, was faint. Today, it is everywhere. It is a reminder: Never give up, never lose faith.
I can’t know whether this reprieve will last, but, given this new life, I plan to embrace it while it does. Even if it means having to make my own breakfast again. Hello, cold cereal.