After that last scan turned up that the cancer had spread, Dr. Amatruda and I discussed what to try next. I wasn't exligible for the "Experimental: Sorafenib + Torrisel vs Sorafenib + Tipifurnib". So next we went shootin' for the Avastin.
I ran into problems with the Avastin: it has been approved for use with some cancers, but not yet (or at least not as far as insurance is concerned) for melanoma. So I applied with the company that makes it for some kind of subsidy or something. Whatever the case, I got the okay to use a drug of this type in with the other chemo drugs (Taxol, other?). In question, however, is whether or not the insurance will cover the infusion. If they do or don't, the infusion charge is a couple hundred bucks. (I tell ya, even if it's my own head, I'm starting to consider costs versus probability of a benefit here.)
So anyway, it took quite a while for the clinic people to go back-and-forth with the insurance company to get to that point. And when it was time to choose, I said let's give it a shot. I got that call from them Wednesday, and we set up the appointment for this morning.
So I had my 5-hour drip and it went much like it had in spring: the Benadryl made me sleep through most of it, until the saline caught up to me near the end and I needed to take a leak. In the past I hadn't had trouble with nausea, so I opted to "skip" the prescription meds. As I found out later in the evening, and not long ago, this wasn't a good guess.
All those years of drinking to excess at least taught me to at least recognize when the stomach has won and it's time to quit fighting it -- and in doing so I don't end up feeling completely terrible afterwards. Around 7pm I went downstairs to tell Angie that I'd changed my mind on getting the prescription anti-nausea meds (which we had called in anyway as a "just in case" measure; if I didn't feel the need, I just wouldn't pick them up). I no sooner finished asking her to go to Walgreen's than demonstrated the need for these meds.
Since the college days I've had issues with post nasal drip. It happens to be worse in the cold months, so it has been a bother lately. What happens with me (sorry about being graphic, but such is my life these days) is that it ends up gagging me. It gets to the point where what it does is similar to causing me to vomit, but to me it is not quite the same. Well, this plus the chemo is not a good combination for me.
So the latter half of the day hasn't been all that fun. I'll have chemo next Friday and the Friday following (days 1, 8, 15 according to their naming scheme). It won't be the same cocktail each time, so the one the day after Thanksgiving will be shorter. After the 3 I suppose I'll have a scan and then discuss the results with Dr. Tom again. We'll either find out that it works and keeps the tumors from growing, or we'll find out other new bad news, I suppose.
Angie seems to view me as being in more pain or discomfort than I think I have. So before I started this she had asked why I was starting this if I really wasn't back to "normal". It's a tough question for me to answer because we view things from almost completely opposite perspectives. She wants to think that I'll be around for 5-10 years and focuses on that, and that in between I should have some periods of the old normal. My view is to set goals of making it to Thanksgiving, Christmas, my birthday; I need to see myself hitting goals regularly, and how I feel day-by-day is what it is.
Anyways, my answer about why I'm trying this, and why now, is because I want to try to keep it from growing. And even if I don't feel like I did two years ago before any of this started, to me I've been feeling good enough. I'm not going to know how it turns out until I try. I might be making some wrong choices. But to me I'm trying to put a hold on the cancer and keep my health, imperfect as it may be, as "good" as it is now. I guess I'm thinking that things could end up a lot worse. I guess we'll see.
I ran into problems with the Avastin: it has been approved for use with some cancers, but not yet (or at least not as far as insurance is concerned) for melanoma. So I applied with the company that makes it for some kind of subsidy or something. Whatever the case, I got the okay to use a drug of this type in with the other chemo drugs (Taxol, other?). In question, however, is whether or not the insurance will cover the infusion. If they do or don't, the infusion charge is a couple hundred bucks. (I tell ya, even if it's my own head, I'm starting to consider costs versus probability of a benefit here.)
So anyway, it took quite a while for the clinic people to go back-and-forth with the insurance company to get to that point. And when it was time to choose, I said let's give it a shot. I got that call from them Wednesday, and we set up the appointment for this morning.
So I had my 5-hour drip and it went much like it had in spring: the Benadryl made me sleep through most of it, until the saline caught up to me near the end and I needed to take a leak. In the past I hadn't had trouble with nausea, so I opted to "skip" the prescription meds. As I found out later in the evening, and not long ago, this wasn't a good guess.
All those years of drinking to excess at least taught me to at least recognize when the stomach has won and it's time to quit fighting it -- and in doing so I don't end up feeling completely terrible afterwards. Around 7pm I went downstairs to tell Angie that I'd changed my mind on getting the prescription anti-nausea meds (which we had called in anyway as a "just in case" measure; if I didn't feel the need, I just wouldn't pick them up). I no sooner finished asking her to go to Walgreen's than demonstrated the need for these meds.
Since the college days I've had issues with post nasal drip. It happens to be worse in the cold months, so it has been a bother lately. What happens with me (sorry about being graphic, but such is my life these days) is that it ends up gagging me. It gets to the point where what it does is similar to causing me to vomit, but to me it is not quite the same. Well, this plus the chemo is not a good combination for me.
So the latter half of the day hasn't been all that fun. I'll have chemo next Friday and the Friday following (days 1, 8, 15 according to their naming scheme). It won't be the same cocktail each time, so the one the day after Thanksgiving will be shorter. After the 3 I suppose I'll have a scan and then discuss the results with Dr. Tom again. We'll either find out that it works and keeps the tumors from growing, or we'll find out other new bad news, I suppose.
Angie seems to view me as being in more pain or discomfort than I think I have. So before I started this she had asked why I was starting this if I really wasn't back to "normal". It's a tough question for me to answer because we view things from almost completely opposite perspectives. She wants to think that I'll be around for 5-10 years and focuses on that, and that in between I should have some periods of the old normal. My view is to set goals of making it to Thanksgiving, Christmas, my birthday; I need to see myself hitting goals regularly, and how I feel day-by-day is what it is.
Anyways, my answer about why I'm trying this, and why now, is because I want to try to keep it from growing. And even if I don't feel like I did two years ago before any of this started, to me I've been feeling good enough. I'm not going to know how it turns out until I try. I might be making some wrong choices. But to me I'm trying to put a hold on the cancer and keep my health, imperfect as it may be, as "good" as it is now. I guess I'm thinking that things could end up a lot worse. I guess we'll see.
1 comment:
Your ability to put your thoughts down for everyone is incredible. I admire your courage and your will to just keep at it when there are times when I am sure that you have had about enough. Keep making those small goals, another day might just make the difference. My thoughts are always with you and I keep sending all my angels your way. xoxoxox gretchen
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