Giant Cell Tumor Network
Drug Trial
Folks have been asking how I've been doing and I've been bad by not posting earlier. My "To Do" list gets away from me as this winter wanes. I want to thank everyone for the seemingly inexhaustible prayers, thoughts, cards, calls, and other demonstrations of your support in these uncertain times.
Living in St. Louis, I've make several trips to the Twin Cities now with Mom, Dad, and husband in tow. My weekly trips are at an end. I have been undergoing treatment in an experimental drug trial. This just means that I get a double IM shot (intermuscular--like insulin--no biggie at all) in the abdomen each week during the loading phase of the experiment. The loading phase just sets my body up with scads of this antibody that blocks RANKL, a chemical thought to be required in order for GCT to grow. After the loading phase, I get to go to Minneapolis only once per month to keep the same level of said experimental drug sustained in my system.
This drug has had a 90% positive response in patients studied during the first run. I am part of this second run around and have been id'ed as a "perfect candidate", presumably because my GCTs are crazy out of control compared to what is considered "normal" for this rare tumor type.
There are so far no real adverse effects from the drug (OMG THANK GOD) and none are expected given past performance on other patients. A positive radiographic response will be tested for in February after 3 months of treatment. Essentially, a negative response is an increase in size and/or number of nodules--period. Anything else is considered a positive response and I may continue in the trial.
I'm hoping for something sooner as unfortunately my symptoms are gradually worsening. Yay for gradual. Nay for worsening. About half of what I'm dealing with is tumor related, half is medicinal side effects to deal with the tumors (pain, inflamation, bla, bla, bla, bla) and another half just for good measure dealing with the outside world in the form of insurance, paperwork, job security, medical benefits, the global nuclear crisis, Obama's contraversial election, and just about everything else it seems like some days!
Speaking of Obama, I just have to say -- SCHWING! -- That's all. Just a bit of op ed in this bombastic cancer crunch blog.
Schwing, baby...yeah...!
Anyway, for those of you who want gorier details, I'll do my best here, but the mindscape is a bit clogged with pain killers, so bare with me.
I was delayed entry into the trial because the freshest biopsy sample on file was 5 days outside the range of acceptable levels. Basically, after 3 more weeks of pushing around, I gotta fine needle aspiration biopsy to confirm that, yes, it is still GCT. Actually, this wasn't such a bad thing to confirm since my GCTs are growing at a more rapid pace, or at least they were.
Currently I believe the lung nodules are about at most 4 cm large and holding. The spinal mass is still too difficult to be precise with because of metalic installments that garble MRIs and other CTs. But I KNOW that one is grumpy because I have lost leg powers (numbness, tingling, weakness in calves, etc) from Grumpy Tumor pressuring the spinal column where the legs' nerve roots live. Eventually, Grumpy Tumor will huff and puff and blow that column in if left alone. I'll be pretty much wheelchaired if that happens. Decompression surgery would be an option after Grumpy Tumor gets starved away to oblivion by the experimental drug, but my surgeons say it is a last ditch effort to do so since the region has already been decompressed during the very first tumor removal operation a year and a half ago. (Wow, has it only been that long?)
"Time Is On My Side", y'know that song that plays constantly throught the movie Fallen? That's my theme right now. This set of GCT is growing pretty fast, but not as fast as normal cancer cells, and certainly not as fast as I intend to kick their little reject deformed DNA asses.
So my main focus now is to just take things hour by hour, as you can see by the time stamp on this lovely bit of blogging. The Masonic Cancer Clinic in Minneapolis as part of the University of Minnesota, St. Paul, is fairly fantastic. They are not quite as organized and well oiled as Barnes Jewish Hospital here in St. Louis, but they are definitely excellent. Each visit (which only lasts 2 - 4 hours) I and a caretaker are accommodated at the Hope Lodge which is a service provided by and in conjunction with the American Cancer Society. I suggest Googling it. It is absolutely free for folks like and for folks who are in need of much longer stays than even a week.
I'm also taking advantage of an ACS volunteer program called Angel Flight where a kind soul flies me and said companion to and from treatment cities in their own prop plane. They take it as a charitable contribution tax write-off (a fairly significant one if fuel prices are out of whack). There is also Corporate Angel Flight which is the same deal but with a private company willing to volunteer services on an organzation jet or what have you. United Airlines will also provide a free commercial round trip flight on an annual basis.
All of these wonderful programs make a 7 - 9 one-way drive much more pallateable at a 2.5 - 3 hour winger. Especially when your looking for drivers willing to make such trips, and double especially when your legs are not cooperating to make life easy.
So when this is hopefully all cleared up and I can at least return to work, I'm buying the ACS a drink or two for all of the outstanding compassion I and others are being shown. Here, here, ACS.
As far as getting in on this trial, you need to contact your oncologist first. Mention the DENOSUMAB (spelling?) trial drug being developed by AMGEN. There are other sites besides Minnesota that are conducting trials for this drug--Los Angeles I believe I heard my physician say is currently open for business. Expect silliness in the screening process. I was "nickeled and dimed" at every turn about when I would get started and how it was to be reimbursed, etc, etc, etc. I would say just keep on them, but my family and I were on them like H2 on O and it may or may not have made water any faster, who knows?
I'll try to keep up on responses for this blog and to read more of what's going on with everyone else here, but admittedly I will struggle right now with these kinds of mundane tasks until things start to get a little more tolerable physically (and mentally). Until then, folks!
Living in St. Louis, I've make several trips to the Twin Cities now with Mom, Dad, and husband in tow. My weekly trips are at an end. I have been undergoing treatment in an experimental drug trial. This just means that I get a double IM shot (intermuscular--like insulin--no biggie at all) in the abdomen each week during the loading phase of the experiment. The loading phase just sets my body up with scads of this antibody that blocks RANKL, a chemical thought to be required in order for GCT to grow. After the loading phase, I get to go to Minneapolis only once per month to keep the same level of said experimental drug sustained in my system.
This drug has had a 90% positive response in patients studied during the first run. I am part of this second run around and have been id'ed as a "perfect candidate", presumably because my GCTs are crazy out of control compared to what is considered "normal" for this rare tumor type.
There are so far no real adverse effects from the drug (OMG THANK GOD) and none are expected given past performance on other patients. A positive radiographic response will be tested for in February after 3 months of treatment. Essentially, a negative response is an increase in size and/or number of nodules--period. Anything else is considered a positive response and I may continue in the trial.
I'm hoping for something sooner as unfortunately my symptoms are gradually worsening. Yay for gradual. Nay for worsening. About half of what I'm dealing with is tumor related, half is medicinal side effects to deal with the tumors (pain, inflamation, bla, bla, bla, bla) and another half just for good measure dealing with the outside world in the form of insurance, paperwork, job security, medical benefits, the global nuclear crisis, Obama's contraversial election, and just about everything else it seems like some days!
Speaking of Obama, I just have to say -- SCHWING! -- That's all. Just a bit of op ed in this bombastic cancer crunch blog.
Schwing, baby...yeah...!
Anyway, for those of you who want gorier details, I'll do my best here, but the mindscape is a bit clogged with pain killers, so bare with me.
I was delayed entry into the trial because the freshest biopsy sample on file was 5 days outside the range of acceptable levels. Basically, after 3 more weeks of pushing around, I gotta fine needle aspiration biopsy to confirm that, yes, it is still GCT. Actually, this wasn't such a bad thing to confirm since my GCTs are growing at a more rapid pace, or at least they were.
Currently I believe the lung nodules are about at most 4 cm large and holding. The spinal mass is still too difficult to be precise with because of metalic installments that garble MRIs and other CTs. But I KNOW that one is grumpy because I have lost leg powers (numbness, tingling, weakness in calves, etc) from Grumpy Tumor pressuring the spinal column where the legs' nerve roots live. Eventually, Grumpy Tumor will huff and puff and blow that column in if left alone. I'll be pretty much wheelchaired if that happens. Decompression surgery would be an option after Grumpy Tumor gets starved away to oblivion by the experimental drug, but my surgeons say it is a last ditch effort to do so since the region has already been decompressed during the very first tumor removal operation a year and a half ago. (Wow, has it only been that long?)
"Time Is On My Side", y'know that song that plays constantly throught the movie Fallen? That's my theme right now. This set of GCT is growing pretty fast, but not as fast as normal cancer cells, and certainly not as fast as I intend to kick their little reject deformed DNA asses.
So my main focus now is to just take things hour by hour, as you can see by the time stamp on this lovely bit of blogging. The Masonic Cancer Clinic in Minneapolis as part of the University of Minnesota, St. Paul, is fairly fantastic. They are not quite as organized and well oiled as Barnes Jewish Hospital here in St. Louis, but they are definitely excellent. Each visit (which only lasts 2 - 4 hours) I and a caretaker are accommodated at the Hope Lodge which is a service provided by and in conjunction with the American Cancer Society. I suggest Googling it. It is absolutely free for folks like and for folks who are in need of much longer stays than even a week.
I'm also taking advantage of an ACS volunteer program called Angel Flight where a kind soul flies me and said companion to and from treatment cities in their own prop plane. They take it as a charitable contribution tax write-off (a fairly significant one if fuel prices are out of whack). There is also Corporate Angel Flight which is the same deal but with a private company willing to volunteer services on an organzation jet or what have you. United Airlines will also provide a free commercial round trip flight on an annual basis.
All of these wonderful programs make a 7 - 9 one-way drive much more pallateable at a 2.5 - 3 hour winger. Especially when your looking for drivers willing to make such trips, and double especially when your legs are not cooperating to make life easy.
So when this is hopefully all cleared up and I can at least return to work, I'm buying the ACS a drink or two for all of the outstanding compassion I and others are being shown. Here, here, ACS.
As far as getting in on this trial, you need to contact your oncologist first. Mention the DENOSUMAB (spelling?) trial drug being developed by AMGEN. There are other sites besides Minnesota that are conducting trials for this drug--Los Angeles I believe I heard my physician say is currently open for business. Expect silliness in the screening process. I was "nickeled and dimed" at every turn about when I would get started and how it was to be reimbursed, etc, etc, etc. I would say just keep on them, but my family and I were on them like H2 on O and it may or may not have made water any faster, who knows?
I'll try to keep up on responses for this blog and to read more of what's going on with everyone else here, but admittedly I will struggle right now with these kinds of mundane tasks until things start to get a little more tolerable physically (and mentally). Until then, folks!
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