I've been gone for a while.
First, I went on what was intended to be a vacation to South Dakota with a dear young friend from the UK. The first day went very well, but the rest of the week turned a bit darker, as my friend became very ill, indeed. In fact, she spent the entire time getting a good inside look at the American health care system, spending an entire week in hospital. Poor Sam!! Luckily she did eventually recover enough to escape her doctors' clutches, and is now safely home and recuperating.
In the meantime, it turns out that between the tiring expedition and my not-so-great reaction to the Gemzar and the extra steroids it has forced on me, my system has pretty much had it, and has gone on strike. Fatigue, digestive issues, muscle cramps, joint and bone pain, and much, much more - these things have kept me mostly housebound and computer-unfriendly for a while now.
The good news is that Dr. Bouncy took more tests yesterday to see if we can figure out what is going on... and we are going to try a different chemo treatment, to see if perhaps it might give me a better quality of life.
And in the meantime, I have a day here and there that isn't too awful - and on those days, I try to do something fun. I had tea with Sam and Gretchen last week, and had a trial 'walk' with my folks yesterday, using the new wheelchair. It's been more than a year since I really got out and about outside, and it was glorious.
Anyway, that's what's been going on. I'll report more next week, when I start the new treatment and know more about what's going on. Until then, get out and enjoy what is left of the lovely autumn weather and foliage - it really is a Good Thing!!
10/9/11
Awareness Worth Having
My friend Donna is posting some really great information about breast cancer in honor of Breast Cancer Awareness Month. All the marketing of Pink glitz and glam, all the Pink pies and ribbons and shirts and motorcycles and cars, all the ballyhoo... it can distract us from some of the more important facts that we really need to get across about breast cancer. It can lead us to underestimate the seriousness about the disease - it can lead us to even believe that breast cancer is curable.
Unfortunately, breast cancer is not curable. Not even the most 'mild' case is curable. The best we have achieved, with all our research and our advances in treatment, is remission. Remission means that the cancer in your body is not currently detectable by our current technology... but it does not mean the cancer is gone. Breast cancer tends to recur, and more often than not when it recurs, it does so in its deadly form.
And there is nothing pinkly pretty about metastatic breast cancer.
So let's get ourselves truly educated about breast cancer. Let's be aware about its realities.
Donna's posts are a good place to start. Here are links to her most recent Awareness Points:
Breast Cancer Subtypes
10 Truths About Breast Cancer
Breast Cancer Remission
Estrogen As a Risk Factor
* My thanks to Donna, whose blog is a constant source of inspiration and information, and whose person is a blessing, indeed!
Unfortunately, breast cancer is not curable. Not even the most 'mild' case is curable. The best we have achieved, with all our research and our advances in treatment, is remission. Remission means that the cancer in your body is not currently detectable by our current technology... but it does not mean the cancer is gone. Breast cancer tends to recur, and more often than not when it recurs, it does so in its deadly form.
And there is nothing pinkly pretty about metastatic breast cancer.
So let's get ourselves truly educated about breast cancer. Let's be aware about its realities.
Donna's posts are a good place to start. Here are links to her most recent Awareness Points:
Breast Cancer Subtypes
10 Truths About Breast Cancer
Breast Cancer Remission
Estrogen As a Risk Factor
* My thanks to Donna, whose blog is a constant source of inspiration and information, and whose person is a blessing, indeed!
10/3/11
Breast Cancer Awareness Month Announcement
Yes, it's that time of year when people suspect us of wearing pink for a purpose. Don't worry, I'm not going to get into the politics of all that right now.
Right now, in honor of Breast Cancer Awareness Month, I'm going to remind you all about Breast Cancer Recovery, a fabulous organization staffed by a group of women to whom I am very proud to be even vaguely connected. Link on over to their website, and if you have (or have had) breast cancer, do yourself a favor and sign up for one of their incredible spirit-reviving retreats. And if you don't have BC, link over and donate a little something, and know that you have made the world a better place.
And if you happen to live anywhere near Wisconsin, consider checking out the folks below who are doing some nice things to support Breast Cancer Recovery during the month of October:
Right now, in honor of Breast Cancer Awareness Month, I'm going to remind you all about Breast Cancer Recovery, a fabulous organization staffed by a group of women to whom I am very proud to be even vaguely connected. Link on over to their website, and if you have (or have had) breast cancer, do yourself a favor and sign up for one of their incredible spirit-reviving retreats. And if you don't have BC, link over and donate a little something, and know that you have made the world a better place.
And if you happen to live anywhere near Wisconsin, consider checking out the folks below who are doing some nice things to support Breast Cancer Recovery during the month of October:
Breast Bra Competition 08/31 - 10/15/2011:
Plum Crazy presents their 3rd Annual Breast Bra Competition! Bring in your decorated bra with a $10.00 donation and you can win big!! All proceeds will benefit Breast Cancer Recovery. C'mon, let's decorate the ceiling with bras!!! Are you a survivor? Please join us for a private judging night! Call us at 608-839-5697 if you are interested! Plum Crazy is located in Cottage Grove, WI visit our website at www.shopplumcrazy.com for more store information.
Madison College offers pink hair extensions 10/1- 10/31/2011:
During the month of October, Madison College Salon (formerly MATC) has pink extensions! Proceeds from this will benefit Breast Cancer Recovery.
Salon Services:
The Madison College Salon is located at 211 N. Carroll Street, just two blocks off of State Street in downtown Madison. Please click here to view our salon services performed by students and supervised by licensed instructors.
Call today to schedule your appointment and ask about our monthly specials. 608-258-2404
Salon Services:
The Madison College Salon is located at 211 N. Carroll Street, just two blocks off of State Street in downtown Madison. Please click here to view our salon services performed by students and supervised by licensed instructors.
Call today to schedule your appointment and ask about our monthly specials. 608-258-2404
Associated Bank Fundraiser 10/1- 10/31/2011:
During the month of October Associated Bank will be raising awareness about Breast Cancer Recovery by selling 1 dollar donate now cards to their costumers at the Fish Hatchery Road and Chapel Valley branch in Madison, WI.
Drink for Pink at Pasquel's 10/1 - 10/31/2011:
10% of all Pink Margarita and Mejor Pink Luxury Tequila sales will be donated to Breast Cancer Recovery. This promotion will take place at both Pasquel's Restaurants located at 1851 Monroe St and 670 North Midvale Boulevard in Madison, WI.
Verlo Mattress Factory Fundraiser 10/1 - 10/31/2011:
As part of its observance of Breast Cancer Awareness Month in October, Verlo Mattress Factory Stores is highlighting the work of Breast Cancer Recovery, a Madison-based non-profit, and some of the women the agency serves. For every bed sold in the month of October certain Verlo Mattress franchises will donate to Breast Cancer Recovery. Please contact your local Verlo Factory to see if they are participating.
Nicole's Creation Fundraiser 10/01 - 12/31/2011:
$1 of every breacelet and lanyard sold will be donated to Breast Cancer Recovery. Click here to view and order these beautiful creations!
Community Change Double Days 10/09/2011 - 10/15/2011:
Order from Community Change during the week of October 9 and double the proceeds will benefit Breast Cancer Recovery. Please visit http://www.thecommunitychange.com for more information.
Wisconsinmade.com fundraiser 10/11 - 10/31/2011:
Wisconsinmade.com, an online food and gift store, is donating 10 percent of Internet sales from October 11- 31 to support Breast Cancer Recovery and Wisconsin Breast Cancer Coalition. Please visit wiconsinmade.com to participate.
Bras For a Cause 10/13/2011:
The Women's Council of Realtors puts on a fun filled event, Bras for a Cause at the Edgewater Hotel. This is an evening filled with fun as local men show off their bras in a runway show. Proceeds will benefit Breast Cancer Recovery. Please click here for more information.
9/18/11
Something To Read
Friend Donna has posted about a particular bit of research that may be promising for treating us metastatic breast cancer folk. As with many other potential treatments for truly deadly and horrendous diseases, this one involves stem cell research. Please read about it - there may not be anything solid we can do to further the cause at the moment, but it's good to be aware and ready to move (in the right direction) when the time comes.
9/7/11
A Bit Of This, A Bit Of That
So a few brief updates:
First of all, my Chemo Buddy Jill just 'graduated' today. From here until at least next spring, she won't have to have any treatments or scans or anything, barring unexpected happenstance (which darn well better not occur, or I will have very stern words for the Powers That Be).
I have mixed feelings - on one hand, I will miss her wonderful spirit and entertaining company, and that of her husband, as well. I also have to admit to a tinge of jealousy.
On the other hand, I'm just thrilled for her, and have very high hopes that she will do excellently. And it's always heartening to get good news when dealing with this monster. I wish Jill health and happiness for many years to come!
Celebrate!!
First of all, my Chemo Buddy Jill just 'graduated' today. From here until at least next spring, she won't have to have any treatments or scans or anything, barring unexpected happenstance (which darn well better not occur, or I will have very stern words for the Powers That Be).
I have mixed feelings - on one hand, I will miss her wonderful spirit and entertaining company, and that of her husband, as well. I also have to admit to a tinge of jealousy.
On the other hand, I'm just thrilled for her, and have very high hopes that she will do excellently. And it's always heartening to get good news when dealing with this monster. I wish Jill health and happiness for many years to come!
-------------------------------
Scylla and Charybdis
On the disconcerting side, my chemo nurse pointed out that my red cell count (at least the immature ones) were sufficient, and that my continued shortness of breath and extreme fatigue/weakness was probably a sign of heart damage. This is not uncommon with many of the chemos, including the ones I have had, and the risks are compounded by the pre-med steroids (see below).
Lucky me. The disconcerting thing is that in a way, dropping dead of a heart attack would be relatively merciful, compared to the death that my particular form of cancer would give me. It seems pitiful and cruel that I might be put in the position of actually wishing to have a heart attack. And of course, it also is pitiful and cruel that the chemo that theoretically is giving me more time with functioning hips/spine is at the same time taking away my ability to take advantage of those things - I am so fatigued and weak that most days I can't walk across a room without getting out of breath and having to sit down and/or take a nap. Forget doing anything useful around the house, or doing things with friends and family - I rarely have the strength any more, even when the chemo side effects are less awful. I am turning into a useless lump, which is not much fun for me and unkind to those who care for me.
Not to mention that I would hate to have my death listed on the 'heart disease' statistics, rather than the cancer death stats. This is not unusual, and allows a couple statistical boondoggles that I detest. By listing chemo-damage deaths to be listed as caused by heart disease rather than cancer or chemo-caused deaths, it makes the oncology stats look much more promising than they actually are. It also allows the pharmaceutical companies to simultaneously not take responsibility for chemo-caused deaths AND gives them even more excuse to push more and more people into taking statins and other highly profitable 'chronic disease' drugs by artificially inflating the 'heart disease' statistics.
----------------------------
Not Dead Yet...
This last week has been a mixed bag, side-effect-wise. Dr. Bouncy raised my steroid prescription with my chemo pre-meds, and added another dose at the end of the week. This means that the risks (including, ahem, heart damage) and side effects from the steroids are increased, which is not good. But on the other hand, my fever stayed within reasonable bounds (99-101), and I got a few extra days of a bit less exhausted and a bit less bone/joint pain.
Which means a few more days of relative functionality - weak and puffy and fluish, but able to sit up and watch TV and write a few emails, which is an improvement on spending the entire week in bed, trying not to cry. I even got two evenings of dining with friends and family this holiday weekend, although I spent a good part of one of them napping (sorry, mom - hopefully tromping us soundly in Bridge helped to make up for the rudeness of the early neglect...).
The chemo effects are accumulative, so things will be harder this week and harder again next week, but I am hopeful that I'll get at least a couple not-too-terrible days out of it. At this point I am grateful for small favors.
------------------------------
Notice
Blogger friend Donna has an announcement about a new Phase II trial for metastatic breast cancer patients. It's worth going over there to check it out if you think you might be interested in volunteering. That said: I do believe in trials, especially ones that are checking out drugs that are relatively new to breast cancer treatment, but please also check out my comment on Donna's post - I do think this one needs a bit of research and weighing in the balance before a decision should be made.
------------------------------
Thanks!
My poor sister fell last week and tore up a lot of ligaments and muscles on her entire right side, leaving her in a good deal of pain and pretty much unable to do anything. There has also been a death in the family this week. This means that my mom has been very busy taking sis to hospital and doctors offices, as well as doing a lot of nursing her at home, and now she has a visitation to somehow wedge into her already overwhelming schedule.
Dad stepped up to the plate today; he drove me to chemo, was not at all cranky when it turned out that they delayed my treatment for several hours (post-holiday overbooking led to several timing errors and issues), and ran out to make me a very nice lunch when it turned out I was going to need it during my dragged-out infusion. It was a real blessing; I was feeling really woozy from the high-dose Benadryl, among other things, and getting that food really helped get me 'grounded' and much less shaky, thank goodness.
My son has promised to take me to treatment on Friday, as he did last week, in order to spare my mom the trouble during what has been a very stressful week for her.
Thanks to Dad and to Bren. I appreciate your help and company very much, indeed.
And thanks to Mom for volunteering for the job most weeks. I don't know what I'd do without you, but I know it wouldn't look good. You are the best!
8/31/11
Yeah, Well...
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.
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.
8/23/11
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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