The meeting with Dr. Bouncy was not particularly encouraging.
In fact, he admitted that we are running out of good options, and actually told me that he would understand if and when I decided I wanted to stop treatment and switch to hospice care. His list of remaining options sounded fairly awful, and from his expression while listing them, I suspect they hold little hope and much worse side effects.
He asked for a hug, and got a little teary-eyed.
Needless to say, this was all very different from his usual optimistic 'never say die' attitude. Not a good sign.
For the moment, he doesn't feel that a scan this soon would be a good idea. He lowered the dosage on the Gemzar and raised the dosage on the steroids, hoping to balance lowering of side effects against lowering of potential effectiveness. We will see how it goes.
In the meantime, he says that he will see if he can get me Capecitabine from the pharmaceutical company on a 'compassionate use' basis, since our insurance will not cover the prescription and the private cost would be nearly half of our already inadequate income. It's the last of the 'less awful, potentially more effective' chemo options, so please cross your fingers or pray or send good thoughts (whichever seems best to you) in my direction, in hopes that he will be successful.
8/31/11
8/23/11
Still Here... Sort Of
I know I haven't written lately.
That is because I haven't had anything to say. I haven't had anything to say because I haven't been able to do much, other than lay in bed and be miserable.
The Gemzar is not agreeing with me. This last week I spent nearly entirely in bed with a high fever (up to the mid 103's). There's no evidence of infection, which is the concern with high fevers and chemo. And fever is not unusual with Gemzar, in particular. It's just that usually people get 'flu symptoms' for one or two days. I get them for five or six, and I get them hard.
The question is - is my suffering now doing me enough good that it will buy me functional time later? Or am I just suffering and losing time?
And we don't know the answer to that. I don't know when we will. But I'll let you know as soon as I know.
Until then, I'm hanging in there as best I can. But it's really fatiguing to do anything (like get across the room, or eat, or breathe), so I may not report in as often as I'd like in the meantime.
That said, this is my 'week off', so I'm hoping that later in the week I might feel a little more myself.
A girl can hope, right?
That is because I haven't had anything to say. I haven't had anything to say because I haven't been able to do much, other than lay in bed and be miserable.
The Gemzar is not agreeing with me. This last week I spent nearly entirely in bed with a high fever (up to the mid 103's). There's no evidence of infection, which is the concern with high fevers and chemo. And fever is not unusual with Gemzar, in particular. It's just that usually people get 'flu symptoms' for one or two days. I get them for five or six, and I get them hard.
The question is - is my suffering now doing me enough good that it will buy me functional time later? Or am I just suffering and losing time?
And we don't know the answer to that. I don't know when we will. But I'll let you know as soon as I know.
Until then, I'm hanging in there as best I can. But it's really fatiguing to do anything (like get across the room, or eat, or breathe), so I may not report in as often as I'd like in the meantime.
That said, this is my 'week off', so I'm hoping that later in the week I might feel a little more myself.
A girl can hope, right?
8/7/11
Not My Favorite Chemo
So, one dose in with the Gemzar, and already 5 hours down in the ER. Nasty side effects and a very high fever for two days - after MORE x-rays and a battery of tests, still not sure why. Sent home with a liter of saline in my veins and a prescription for broad-spectrum antibiotics in my pocket.
No, we are NOT having fun yet.
And we're not so sure that I'm going to be able to stick this chemo drug out. Theoretically (and according to the two oncologists I've spoken to on the subject), Gemzar is supposed to be 'relatively mild' as chemo chemicals go... but it hasn't worked out that way for me so far. And a dear friend had a nightmarish experience with it. So. I guess I'll try it for another week (along with the antibiotics, this should be fun), and see where it goes.
But I can't say I'm happy about it.
No, we are NOT having fun yet.
And we're not so sure that I'm going to be able to stick this chemo drug out. Theoretically (and according to the two oncologists I've spoken to on the subject), Gemzar is supposed to be 'relatively mild' as chemo chemicals go... but it hasn't worked out that way for me so far. And a dear friend had a nightmarish experience with it. So. I guess I'll try it for another week (along with the antibiotics, this should be fun), and see where it goes.
But I can't say I'm happy about it.
8/5/11
Conspiracy Theory
A friend recently posted that the conspiracy theories swirling around the pharmaceutical industry and its relationship to the FDA and etc don't make sense because they and their families get cancer too, so of course they'd want to find cures...
But that argument doesn't hold up under scrutiny. I'll get back to the specifics of that particular argument in a bit, but first let's discuss the reasons that Big Pharma and the FDA might have for obstructing the testing and approval of promising new treatments for cancer.
Pharmaceutical companies have lots of political clout; observe, for instance, political campaign contributions to both sides of the aisle from pharmaceutical, insurance, and tobacco companies over the last 30 years, and think about what value they were/are expecting from the money spent. They have HUGE incentives to get in the way of research on anything but their own extremely profitable drugs (common chemo treatments cost up to $50,000 per month at one treatment per week, some cost more).
Notice who benefits from the system set up currently in terms of getting treatments approved - the requirements for publishing, patenting, the bureaucratic hoops to be jumped, the insane amount of money required for even the smallest 'acceptable' human trials (which will not be anywhere near sufficient to get your treatment approved).
Check out who is on the board of the FDA, who pays them money for their services, where their investments are held, what their own patents and patents pending are. Check out the FDA rules about how and when drugs are approved. Check out the trials going on for the last few years, see how many are on new treatments vs. various combinations of the same old stuff that doesn't really work. Notice who is funding the trials.
Think about what these things mean for the big pharmaceutical companies, in terms of keeping the profits going on the drugs they already have patented. Think of what their stockholders expect. Look at what is happening to Eli Lilly at the moment because of their patents running out, and think what would happen to other pharmaceutical companies if their extremely profitable chemo and 'mental health' drugs were rendered pointless by better treatment.
Unfortunately, the 'they get cancer too' argument doesn't hold up, unless you also think that somehow the families of tobacco bigwigs (as well as the farmers and pickers and factory workers) were either immune from cancer or that they all TRULY believed that cigarettes don't cause cancer (in spite of the mountain of evidence waved in their collective faces).
In the end, the officers at pharmaceutical and tobacco companies have to weigh their options - do they give up their livelihoods right now, or do they take a little gamble on a potential risk down the road?
Also remember: like those of the tobacco industry, families of the officers of big pharmaceutical companies can well afford to go to Europe for the latest treatments, and they do so.
You and I don't have that luxury.
I'm not saying we should spend our hours sitting around in a stew of fury - that wouldn't be healthy for us, and we have troubles enough. But it's not good to close our eyes and pretend that everything is okay when it's not, either. The system is flawed, and it's not working for people with the deadliest forms of cancer. The survival rate (including median survival times) for breast cancer is exactly the same as it was in the 1930's. Do we find that acceptable, when we actually think about it?
We changed the system for children's cancers, and it has led to some significant advances in survival and treatment. We should be doing the same for adult cancers. But that won't happen until we stand up, yell loudly and put our votes where our mouths are. That happened when our insurance companies tried to decimate our treatment options for catastrophic/chronic illnesses back in the 1980's; we can do it for cancer, if we have the will.
But that argument doesn't hold up under scrutiny. I'll get back to the specifics of that particular argument in a bit, but first let's discuss the reasons that Big Pharma and the FDA might have for obstructing the testing and approval of promising new treatments for cancer.
Pharmaceutical companies have lots of political clout; observe, for instance, political campaign contributions to both sides of the aisle from pharmaceutical, insurance, and tobacco companies over the last 30 years, and think about what value they were/are expecting from the money spent. They have HUGE incentives to get in the way of research on anything but their own extremely profitable drugs (common chemo treatments cost up to $50,000 per month at one treatment per week, some cost more).
Notice who benefits from the system set up currently in terms of getting treatments approved - the requirements for publishing, patenting, the bureaucratic hoops to be jumped, the insane amount of money required for even the smallest 'acceptable' human trials (which will not be anywhere near sufficient to get your treatment approved).
Check out who is on the board of the FDA, who pays them money for their services, where their investments are held, what their own patents and patents pending are. Check out the FDA rules about how and when drugs are approved. Check out the trials going on for the last few years, see how many are on new treatments vs. various combinations of the same old stuff that doesn't really work. Notice who is funding the trials.
Think about what these things mean for the big pharmaceutical companies, in terms of keeping the profits going on the drugs they already have patented. Think of what their stockholders expect. Look at what is happening to Eli Lilly at the moment because of their patents running out, and think what would happen to other pharmaceutical companies if their extremely profitable chemo and 'mental health' drugs were rendered pointless by better treatment.
Unfortunately, the 'they get cancer too' argument doesn't hold up, unless you also think that somehow the families of tobacco bigwigs (as well as the farmers and pickers and factory workers) were either immune from cancer or that they all TRULY believed that cigarettes don't cause cancer (in spite of the mountain of evidence waved in their collective faces).
In the end, the officers at pharmaceutical and tobacco companies have to weigh their options - do they give up their livelihoods right now, or do they take a little gamble on a potential risk down the road?
Also remember: like those of the tobacco industry, families of the officers of big pharmaceutical companies can well afford to go to Europe for the latest treatments, and they do so.
You and I don't have that luxury.
I'm not saying we should spend our hours sitting around in a stew of fury - that wouldn't be healthy for us, and we have troubles enough. But it's not good to close our eyes and pretend that everything is okay when it's not, either. The system is flawed, and it's not working for people with the deadliest forms of cancer. The survival rate (including median survival times) for breast cancer is exactly the same as it was in the 1930's. Do we find that acceptable, when we actually think about it?
We changed the system for children's cancers, and it has led to some significant advances in survival and treatment. We should be doing the same for adult cancers. But that won't happen until we stand up, yell loudly and put our votes where our mouths are. That happened when our insurance companies tried to decimate our treatment options for catastrophic/chronic illnesses back in the 1980's; we can do it for cancer, if we have the will.
8/2/11
No News Is Bad News...
So the news isn't good. The Circulating Tumor Cell only found one cell in the sample. One is about what you'd expect to find in a healthy person, if the test was going to be effective for your particular cancer. So no CTC test for me after this - and no help in finding a working treatment quickly enough to be truly useful.
I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back). The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis. Probably a good thing that I have no uterus or ovaries to be crowded...
Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans. The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs. And my insurance is dragging its feet about getting back to us on that issue. In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.
More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial. Dr. B didn't feel that I could afford to wait any longer.
So I'm on the chemo today that I SHOULD have been on last week (Gemzar). I gained tumor size, was heavily irradiated - and didn't gain a thing. Because I have now been on three chemo treatments, I no longer qualify for the trial. So that is that.
And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment). So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.
Smart. Very smart. The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt. So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world. Don't we? Don't we??
I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back). The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis. Probably a good thing that I have no uterus or ovaries to be crowded...
Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans. The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs. And my insurance is dragging its feet about getting back to us on that issue. In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.
More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial. Dr. B didn't feel that I could afford to wait any longer.
So I'm on the chemo today that I SHOULD have been on last week (Gemzar). I gained tumor size, was heavily irradiated - and didn't gain a thing. Because I have now been on three chemo treatments, I no longer qualify for the trial. So that is that.
And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment). So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.
Smart. Very smart. The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt. So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world. Don't we? Don't we??
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