Saturday, April 21, 2007
I should probably also mention...
My CT scan results came back showing improvement. Since there was still some concern about why my liver counts were off, I had to wait until the blood test results were back on Tuesday before going to the infusion area.
It took hours.
It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.
Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.
Anyway, the numbers came down so I went to go be infused as normal.
I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.
It took hours.
It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.
Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.
Anyway, the numbers came down so I went to go be infused as normal.
I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.
Labels: Abraxane, blood tests, braces, chemo, CT scan, Decadron, dermatologist, Dr. Hayes, infusion, Lita, liver
Friday, March 30, 2007
Impending Scans and a Departure
Blood test results show one tumor marker down (yay!), one blipped up somewhat (boo!) and my liver function tests show some results that are of enough concern to warrant a new battery of scans, including a bone scan and the ever-popular Barium Barrage, or "CT with contrast" (%$#@!).
I contacted Lita to find out about getting a "power port" but changed my mind when speaking to the scheduling people, who indicated that a power port has to go in the chest and cannot be placed in the arm.
For now I am going to have to live with the agonizing jabby-jab-jab of IV placement for the contrast dye.
Also, I absolutely must resume the Neupogen shots, which are for the purpose of boosting white blood cell counts and feeling like one is being stung by a bee without having to go outside or risk exposure to pollen. And a significant portion of my remaining twelve hairs have decided to shuffle off the mortal coil that is my head.
I contacted Lita to find out about getting a "power port" but changed my mind when speaking to the scheduling people, who indicated that a power port has to go in the chest and cannot be placed in the arm.
For now I am going to have to live with the agonizing jabby-jab-jab of IV placement for the contrast dye.
Also, I absolutely must resume the Neupogen shots, which are for the purpose of boosting white blood cell counts and feeling like one is being stung by a bee without having to go outside or risk exposure to pollen. And a significant portion of my remaining twelve hairs have decided to shuffle off the mortal coil that is my head.
Labels: baldness, barium, blood tests, bone scan, CT scan, hair, IV, Lita, Neupogen, port, tumor marker
Tuesday, January 16, 2007
Ok, Break's Over: now where did I put that mandible?
It was nice while it lasted.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
Labels: Abraxane, Avastin, barium, blood tests, bone scan, Brian, chemo, CT scan, Dr. Hayes, hospital, Lita, liver, metastasis, Neupogen, tumor marker, Zometa
Thursday, January 04, 2007
So Long, Reappearing Eyebrows
Brian got worried while processing nursing and oncology journals at work, and contacted Lita, who left a message for me to call her back.
My blood tests may warrant new scans after all.
I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.
Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.
I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.
I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.
I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.
My blood tests may warrant new scans after all.
I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.
Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.
I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.
I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.
I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.
Labels: Abraxane, baldness, barium, blood tests, bone scan, Brian, CT scan, eyebrows, hair, Lita, nausea
Saturday, December 23, 2006
Marker Update
Lita called the other day with my test results: my tumor markers appear to be almost identical to last time. I have a couple of liver test results that are wonky, but overall things are great. This means for at least one more month, I will be able to remain chemo-free.
\o/
\o/
Labels: blood tests, chemo, Lita, liver, tumor marker
Friday, July 14, 2006
The Difference Between Bowling and Mini-Golf
Aside from the fact that the ball size is totally different and that I completely suck at bowling (the last time I bowled I received a score of 19, due only to the scorekeeper's accidentally counting three pins twice), whereas I have been known to once in a while eke out a victory in my annual Martha's Vineyard mini-golf game, the scoring is exactly the opposite.
In bowling, you want your score to be as high as possible with as many strikes as you can get. With mini-golf, you want your score to be low as it can be.
I have printouts from the hospital showing results of various blood tests--which they have to do before determining whether I'm healthy enough to receive this week's dose of chemotherapy--and the array of things monitored is dizzying. There are white blood cell counts, various chemical counts, red blood cell counts, tumor antigen counts, things related to liver function, and I have one sheet listing I-don't-even-know-what.
The two major numbers that I've been paying attention to are the white blood cell count and the tumor antigen count. You want to have a high enough white blood cell count to be able to fight off infection, otherwise they will not administer the chemotherapy because it is just too risky. If you can't bowl, they won't let you in the league. So Brian has been administering subcutaneous Neupogen shots at home (which is hysterically funny for anyone who knows how much I just love needles) the four days after my chemo treatment. So far it's been working. The tumor marker count is like your minigolf score: the lower, the better. On my sheet, it started out around 55 in November and reached a high of over 200 before starting to go down.
Anyway, Lita called the other day and told Brian we are to celebrate because the numbers are all going in the direction they should be (also, the test results show that my liver function is almost back to normal, but that doesn't fit into my stupid analogy). I don't know how the numbers compare right now to what is on the printouts, because Brian couldn't find the sheets and didn't write down what Lita told him.
I am cautiously optimistic about the tumor counts. I'm not sure it will ever be possible to make it under par, but lowering my score at all is a good thing.
In bowling, you want your score to be as high as possible with as many strikes as you can get. With mini-golf, you want your score to be low as it can be.
I have printouts from the hospital showing results of various blood tests--which they have to do before determining whether I'm healthy enough to receive this week's dose of chemotherapy--and the array of things monitored is dizzying. There are white blood cell counts, various chemical counts, red blood cell counts, tumor antigen counts, things related to liver function, and I have one sheet listing I-don't-even-know-what.
The two major numbers that I've been paying attention to are the white blood cell count and the tumor antigen count. You want to have a high enough white blood cell count to be able to fight off infection, otherwise they will not administer the chemotherapy because it is just too risky. If you can't bowl, they won't let you in the league. So Brian has been administering subcutaneous Neupogen shots at home (which is hysterically funny for anyone who knows how much I just love needles) the four days after my chemo treatment. So far it's been working. The tumor marker count is like your minigolf score: the lower, the better. On my sheet, it started out around 55 in November and reached a high of over 200 before starting to go down.
Anyway, Lita called the other day and told Brian we are to celebrate because the numbers are all going in the direction they should be (also, the test results show that my liver function is almost back to normal, but that doesn't fit into my stupid analogy). I don't know how the numbers compare right now to what is on the printouts, because Brian couldn't find the sheets and didn't write down what Lita told him.
I am cautiously optimistic about the tumor counts. I'm not sure it will ever be possible to make it under par, but lowering my score at all is a good thing.
Labels: blood tests, Brian, chemo, Lita, liver, Neupogen, tumor antigen, tumor marker, white blood cell
