Not a lot happening at the moment, although there's plenty of busy-ness. I'm getting tested to see if I qualify for a Phase 2 Drug Trial, which means blood tests and scans and lots of paperwork.
Phase 1 Trials generally test mostly for how toxic the drug is, with effectiveness being secondary. They are generally very small trials. Phase 2 Trials check for both toxicity and effectiveness, with a moderate number of study patients - in the case of the trial we are considering, this is about 160 metastatic breast cancer patients. When drugs/treatments fail, it is usually in the Phase 2 Trials, primarily because the treatment proves to be either ineffective or too toxic for large numbers of patients to tolerate. Phase 3 and 4 trials are usually longer, larger cohort studies, fine-tuning issues such as most effective dosage and dose frequency, toxicity management, long-term and rare side effects, etc.
With a new drug, early Phase 2 Trials are more or less a crap shoot. You don't really know all the side effects (the prior trials were probably too small to indicate the less common - and usually more severe - side effects, and of course there is no data on long term effects). You usually don't really know the effectiveness of the drug on your specific type of cancer.
There are benefits, but they often don't fall upon the patient (unless it turns out to be a spectacular success - Tamoxifen, for instance, was stopped in the middle of the Phase 3 trials because it was so effective that they wanted to make it available to all breast cancer patients with hormone-sensitive tumors). The study pays for testing and drugs - which could be useful to patients with no health care insurance, but in my case the benefit is to my insurance company, rather than to me. The pharmaceutical company benefits, because they get to test and hopefully eventually market a very profitable drug (chemo drugs bring in HUGE amounts of money to the industry). Doctors get to learn about new drugs, and find out whether they are effective before they are even generally available. But the patients...
Well, a miracle could happen, and the drug could be an amazingly effective treatment. We haven't found one yet, but you never know. But the odds aren't in your favor. The likelihood is that the drug will either be completely ineffective, or it will be minimally effective, or - at best - it will have about a 30% (the 'gold standard' chemos have about a 30% 'success' rate) chance of either shrinking, stabilizing, or slowing down your tumors for a little while. In most cases, a 'little while' is literally a matter of a few days to a few weeks. If it's a few weeks, they call out the media and stop the presses and declare it The Next Big Thing. And again, they are generally looking for 'progression free' weeks, rather than longer lifespan.
And in the meantime, the patient is the one taking all the really big risks. Because it's the patient who goes in with no idea of what horrible things the drug might do to them, and nobody can tell them. Which is why so many drugs don't get past Phase 2 - people die or have new cancers or heart attacks or blood clots, and maybe it's for a drug that helps some people, or maybe it's all for nothing.
But if nobody joins a Phase 2 Trial, then they will NEVER find the REAL cure. Somebody has to do them. The question is: in this case, should somebody be me?
I'm not sure yet. I'm thinking about it. In the meantime, I'm going in tomorrow to drink a lot of contrast dye and get injected with even more, so that I can be extremely thoroughly CT'd and bone scanned. The CT scan is because they don't care about my bone mets - they aren't 'properly measurable'. Though why they then want a bone scan, I can't imagine. What they are insisting on is that I have soft tissue tumors that are big enough to measure through a period of shrinkage (in the best of all possible worlds). Which may not be the case. So first we find out if I'm eligible.
Then I decide. The devil we sort of know (Gemzar), or the devil we don't?
7/28/11
7/25/11
Well, That Sucks...
Unfortunately, my cancer seems to be more clever than I am. At least, it seems to be very quick to work around whatever we throw at it.
Bad news from the scan: the tumors are roaring ahead again, full speed ahead.
On to another chemo drug. Unknown side effects (at least for me), unknown efficacy.
Really, people, this ride stopped being fun a long, long time ago. Where's the emergency switch? I want to get off...**
**No, I don't mean life. I mean cancer. I still have plenty of books to read, yarn to spin and people to love...
Bad news from the scan: the tumors are roaring ahead again, full speed ahead.
On to another chemo drug. Unknown side effects (at least for me), unknown efficacy.
Really, people, this ride stopped being fun a long, long time ago. Where's the emergency switch? I want to get off...**
**No, I don't mean life. I mean cancer. I still have plenty of books to read, yarn to spin and people to love...
7/23/11
Weekend Jitters
Scan this morning, so as usual I'm flittering between fingernail-chewing (figuratively speaking) and trying desperately to distract myself. My misery will be relatively short-lived, as I'll be seeing Dr. Bouncy and getting a look at the scan results, if not the report, early on Monday morning. Then we'll decide what the next treatment plan is.
I've been having some indications that all is not well, so I'm not feeling hopeful. Starting a new treatment is rife with potential problems and risks, especially when you don't know if it will even do you any good.
The good news is that it looks like I'm going to be able to get the CTC test done, and done within a week or so of the scan, which means we'll have some idea of a 'baseline' to work with IF the test is able to detect tumor cells in my blood.
What is a CTC test? Well, it's a special blood test that is recently available for certain cancers - breast cancer is one of them - that detects and counts the number of tumor cells circulating in your blood. It requires specialized tubes for collection, and has to be sent to qualified labs and processed very quickly (within 48 hours).
IF there are detectable tumor cells in your sample, the number per volume can fairly accurately predict your prognosis - at least, it can tell you whether a particular treatment is working or not, based on the tumor cell count on your last test.
The benefits:
Unlike scans, the CTC test does not irradiate you and make your cancer more likely to grow.
You can take the CTC test a month after starting a new treatment, and get some idea of whether that treatment is working. Scans are usually limited to every 3-6 months, which can be a very long time to let a cancer grow if a treatment is not working.
CTC tests cost at 1/5th or less the cost of scans.
CTC tests don't take up as much time for the patient as a scan, and don't cause the claustrophobia or discomfort that laying still in that confining tube can bring.
Unlike scans, CTC tests are as accurate and easy for diabetics as they are for non-diabetics.
CTC tests do not require the annoying dietary restrictions for 28 hours beforehand that scans demand.
Preliminary testing seems to indicate that when circulating tumor cells are detectable, the CTC test is more accurate in predicting likely survival time (on current treatment, at least) than scans. I'm not completely sure about this, but I believe this is because the number of cells per volume indicates speed of metastatic spread. And that, of course, tends to be a fairly big predictor of survival.
The disadvantages:
CTC tests do not always detect circulating tumor cells in the samples of particular people, even if they have advanced/metastatic cancer. The circulating tumor cells that are sending metastases into distant areas of their bodies might be traveling via the spinal fluid, for instance, or the bone marrow.
CTC tests do not tell you where the tumors are, how large they are, whether they are growing, how aggressively they are growing, or if they are doing serious damage. At best, they simply tell you if your tumors are more active, or less active, in sending out metastasizing cells.
The reason I am anxious to take this test is that the other blood tests that are indicative for breast cancer have not been effective for me - no matter how advanced my cancer gets, the results for the standard tests stay the same. So I've been dependent on scans to tell me about whether or not a treatment is successful, and in at least one case that meant that my cancer was allowed to grow unchecked for several months, leading to a gain of nearly 20 extra tumors. One more progression like that (or frankly, considerably less than that) will be the end of me.
So knowing quickly whether a treatment is working could literally be a matter of life and death for me.
Wish me luck. I need it.
I've been having some indications that all is not well, so I'm not feeling hopeful. Starting a new treatment is rife with potential problems and risks, especially when you don't know if it will even do you any good.
The good news is that it looks like I'm going to be able to get the CTC test done, and done within a week or so of the scan, which means we'll have some idea of a 'baseline' to work with IF the test is able to detect tumor cells in my blood.
What is a CTC test? Well, it's a special blood test that is recently available for certain cancers - breast cancer is one of them - that detects and counts the number of tumor cells circulating in your blood. It requires specialized tubes for collection, and has to be sent to qualified labs and processed very quickly (within 48 hours).
IF there are detectable tumor cells in your sample, the number per volume can fairly accurately predict your prognosis - at least, it can tell you whether a particular treatment is working or not, based on the tumor cell count on your last test.
The benefits:
Unlike scans, the CTC test does not irradiate you and make your cancer more likely to grow.
You can take the CTC test a month after starting a new treatment, and get some idea of whether that treatment is working. Scans are usually limited to every 3-6 months, which can be a very long time to let a cancer grow if a treatment is not working.
CTC tests cost at 1/5th or less the cost of scans.
CTC tests don't take up as much time for the patient as a scan, and don't cause the claustrophobia or discomfort that laying still in that confining tube can bring.
Unlike scans, CTC tests are as accurate and easy for diabetics as they are for non-diabetics.
CTC tests do not require the annoying dietary restrictions for 28 hours beforehand that scans demand.
Preliminary testing seems to indicate that when circulating tumor cells are detectable, the CTC test is more accurate in predicting likely survival time (on current treatment, at least) than scans. I'm not completely sure about this, but I believe this is because the number of cells per volume indicates speed of metastatic spread. And that, of course, tends to be a fairly big predictor of survival.
The disadvantages:
CTC tests do not always detect circulating tumor cells in the samples of particular people, even if they have advanced/metastatic cancer. The circulating tumor cells that are sending metastases into distant areas of their bodies might be traveling via the spinal fluid, for instance, or the bone marrow.
CTC tests do not tell you where the tumors are, how large they are, whether they are growing, how aggressively they are growing, or if they are doing serious damage. At best, they simply tell you if your tumors are more active, or less active, in sending out metastasizing cells.
The reason I am anxious to take this test is that the other blood tests that are indicative for breast cancer have not been effective for me - no matter how advanced my cancer gets, the results for the standard tests stay the same. So I've been dependent on scans to tell me about whether or not a treatment is successful, and in at least one case that meant that my cancer was allowed to grow unchecked for several months, leading to a gain of nearly 20 extra tumors. One more progression like that (or frankly, considerably less than that) will be the end of me.
So knowing quickly whether a treatment is working could literally be a matter of life and death for me.
Wish me luck. I need it.
7/22/11
Long Time No Write
As blogging friend Nancy points out, I guess I haven't written in a little bit. This is because things have been happening too fast. Not all bad, not all good, but lots of stuff that keeps me busy and off the computer.
For one thing, a very old friend came across the country to visit, and that took up several days. We drove down the River Road, we went to the Science Museum to see the King Tut exhibit, we caught up on a year's worth of news and many decades of reminiscences. And we ate and we ate and we ate. Some restaurants were disappointing - my friend is a Foodie, and was hugely looking forward to eating to the nationally renowned Piccolo, whose food turned out to be largely bland and uninteresting.
On the other hand, we had the
Best.
Meal.
Ever.
We went to La Belle Vie in Minneapolis and indulged in the 8-course Chef's Tasting Menu (plus the Amuse Bouche beforehand and the Petit Fours afterwards), and the guys added to that the matching wine flights (I tasted each wine but did not indulge). Each plate was a treasure unto itself, the company was more than convivial, and a great time was had by all.
On either side of the visit was your usual family activities, and then an unfortunate necessity - we had to put our poor old kitty down. Her body had been breaking down for quite a while, but the degeneration had accelerated over the last couple months, and was achieving critical mass by last week. She was a charming, beautiful, quirky, curmudgeonly personality who added much to our enjoyment of the past 16 years. She will be greatly missed.
She is also a very good argument for adopting adult animals from your local animal shelter. If you don't have a need for a pet, please go to your local animal shelter and make a donation. Even small amounts will keep a number of animals alive long enough to find loving homes.
For one thing, a very old friend came across the country to visit, and that took up several days. We drove down the River Road, we went to the Science Museum to see the King Tut exhibit, we caught up on a year's worth of news and many decades of reminiscences. And we ate and we ate and we ate. Some restaurants were disappointing - my friend is a Foodie, and was hugely looking forward to eating to the nationally renowned Piccolo, whose food turned out to be largely bland and uninteresting.
On the other hand, we had the
Best.
Meal.
Ever.
We went to La Belle Vie in Minneapolis and indulged in the 8-course Chef's Tasting Menu (plus the Amuse Bouche beforehand and the Petit Fours afterwards), and the guys added to that the matching wine flights (I tasted each wine but did not indulge). Each plate was a treasure unto itself, the company was more than convivial, and a great time was had by all.
On either side of the visit was your usual family activities, and then an unfortunate necessity - we had to put our poor old kitty down. Her body had been breaking down for quite a while, but the degeneration had accelerated over the last couple months, and was achieving critical mass by last week. She was a charming, beautiful, quirky, curmudgeonly personality who added much to our enjoyment of the past 16 years. She will be greatly missed.
She is also a very good argument for adopting adult animals from your local animal shelter. If you don't have a need for a pet, please go to your local animal shelter and make a donation. Even small amounts will keep a number of animals alive long enough to find loving homes.
7/15/11
More Pink Business
As long-time blogger friend and newly diagnosed BC Sister Nancy points out, my KomenWatch link was no longer working. So I fixed it, I hope... and added a couple more links in my BC Info section. Thanks for reminding me, Nancy. I'll try to add some more useful sites to that list for you in the next few days.
It's worth visiting the KomenWatch site; they've posted a few new articles recently, the latest on Komen's marketing of two new products and how that sort of marketing impacts the theoretical bottom line of a supposedly non-profit agency. Link from that article or this to Geoff Livingston's comments on 'Cause Competitiveness' and how it affects the bottom line of non-profits - assuming that the bottom line of a cause-related organization is to find a solution to a particular problem, and thus to eventually put itself out of business. He raises points well worth pondering.
It's worth visiting the KomenWatch site; they've posted a few new articles recently, the latest on Komen's marketing of two new products and how that sort of marketing impacts the theoretical bottom line of a supposedly non-profit agency. Link from that article or this to Geoff Livingston's comments on 'Cause Competitiveness' and how it affects the bottom line of non-profits - assuming that the bottom line of a cause-related organization is to find a solution to a particular problem, and thus to eventually put itself out of business. He raises points well worth pondering.
7/13/11
I Love My Friends
Some of my wonderful women friends are getting bad news this week. They are looking at some of the same hard choices that I have either had to make in the past, or that I am making now.
Some of them are making these choices for the first time; I remember how scary that was when I was looking into that great unknown. I also remember how angry I was as I found out more about the choices I wasn't being offered (or allowed to make).
Some of them are making these choices again, the latest exercise in a long line of choosing between one evil and another. The quality of the scared and angry is a bit different with wear and tear, but it's still there. The choices aren't easier - although we know a bit more, through research and experience, we're still facing some great unknowns.
It sucks, no matter how you look at it.
Unfortunately, although I can offer information, and more importantly my sympathy and support, I cannot offer answers or fixes. As far as I can find, there aren't any of those out there.
But I can offer love. I'm thinking of you every day, my sisters; I cannot hold you in my arms, but I hold you in my heart - as I know you hold me in yours. In that connection, at least, we are strong.
Some of them are making these choices for the first time; I remember how scary that was when I was looking into that great unknown. I also remember how angry I was as I found out more about the choices I wasn't being offered (or allowed to make).
Some of them are making these choices again, the latest exercise in a long line of choosing between one evil and another. The quality of the scared and angry is a bit different with wear and tear, but it's still there. The choices aren't easier - although we know a bit more, through research and experience, we're still facing some great unknowns.
It sucks, no matter how you look at it.
Unfortunately, although I can offer information, and more importantly my sympathy and support, I cannot offer answers or fixes. As far as I can find, there aren't any of those out there.
But I can offer love. I'm thinking of you every day, my sisters; I cannot hold you in my arms, but I hold you in my heart - as I know you hold me in yours. In that connection, at least, we are strong.
7/9/11
What Could Be A Significant Breakthrough
Dana Farber has a new cancer treatment in the works, and it looks like it could be a doozy. I doubt the studies will come soon enough to help me, but there is hope that the treatment could be around for my younger family members and their friends, if the time comes that they might need it.
This treatment involves what are called PARP inhibitors, which previously seemed to be effective only for a rather limited number of people with breast and ovarian cancer - those who lacked functioning BRCA1 and BRCA2 proteins. These BRCA proteins help to repair DNA damage to cells, but seem to be particularly effective in repairing DNA damage to cancer cells, which means that the cancer cells are able to quickly find ways to protect themselves from damage, and to continue growing. Which is why treatments tend to stop working after a period of time.
PARP inhibitors prevent less serious DNA damage to cancer cells, which in combination with lack of functioning BRCA proteins, leaves those cells more susceptible to being killed off by treatments such as radiation and chemo.
Another protein, CDK1, regulates cell growth and is overactive in many types of cancers. Dana Farber's recent studies indicate that CDK1 is a necessary activator for BRCA1, and that a CDK1 inhibitor can be used to disable what would otherwise be working BRCA1 proteins, making the PARP inhibitor functional for a larger number of cancers.
Not only does it look as though this combo of PARP and CDK1 inhibitors might be very effective for at least some people, but it also seems to be non-toxic, as it only affects cancer cells, and largely leaves normal cells alone. Welcome news for those of us on toxic treatments; we hardly need to add more poison to what we are already taking on.
This seems like a very exciting development to me. If you are interested in getting a more in-depth (and probably more clear) understanding of this potential treatment, you can find a good article about it - and links to even more pertinent information - here.
This treatment involves what are called PARP inhibitors, which previously seemed to be effective only for a rather limited number of people with breast and ovarian cancer - those who lacked functioning BRCA1 and BRCA2 proteins. These BRCA proteins help to repair DNA damage to cells, but seem to be particularly effective in repairing DNA damage to cancer cells, which means that the cancer cells are able to quickly find ways to protect themselves from damage, and to continue growing. Which is why treatments tend to stop working after a period of time.
PARP inhibitors prevent less serious DNA damage to cancer cells, which in combination with lack of functioning BRCA proteins, leaves those cells more susceptible to being killed off by treatments such as radiation and chemo.
Another protein, CDK1, regulates cell growth and is overactive in many types of cancers. Dana Farber's recent studies indicate that CDK1 is a necessary activator for BRCA1, and that a CDK1 inhibitor can be used to disable what would otherwise be working BRCA1 proteins, making the PARP inhibitor functional for a larger number of cancers.
Not only does it look as though this combo of PARP and CDK1 inhibitors might be very effective for at least some people, but it also seems to be non-toxic, as it only affects cancer cells, and largely leaves normal cells alone. Welcome news for those of us on toxic treatments; we hardly need to add more poison to what we are already taking on.
This seems like a very exciting development to me. If you are interested in getting a more in-depth (and probably more clear) understanding of this potential treatment, you can find a good article about it - and links to even more pertinent information - here.
7/3/11
On Hold...
We're having some fairly complicated personal stuff going on at the moment, so I'm taking a bit of time off from all but the most essential survival-oriented functions - which means it might be a few days, or even a week or two, before I post here. Don't give up on me, please. I'll get back to you eventually. In the meantime, please visit some of the lovely blogs and bloggers you will find on the right side of this page. They have plenty to say, and you may find that you make a new friend or two in the process!
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