So far, this has been a tough week in the medical news department. On Monday, we learned that my bilirubin has doubled. That's not good, because it suggests that the chemo is not shrinking the tumor enough to impact the place where the tumor is pressing against my bile duct bypass. At some point, having bile build up is uncomfortable, and then dangerous. This is the condition that brought me to the hospital last May.
Then, today, we learned that my CA 19-9 numbers have doubled, to around 4,000. That's also very bad news, and a further indicator that the chemo is not working. So, I'm scheduled to talk by phone to the oncologist, Dr. J, on Friday, to go for a CT scan on Monday, and then to meet with him on Friday, May 4, when we'll re-evaluate the treatment plan.
On top of all of this, the latest infusion of Gemzar has sent my hair falling out at a more rapid rate. Folks don't often lose all of their hair with this drug, but at this rate, I'm soon going to have very sparse locks. So, on Friday morning, we go to the wig place so that I have a wig as an option if I continue to lose my hair in birdsnests-full clumps each morning in the shower.
All in all, my spirits are pretty low with all of this news. The bad news has been offset by some glorious spring weather, and the sight of spring flowers finally beginning to appear. Still, this is my life that's gradually being measured by this test and that, and I don't like the news. At all. Please keep your prayers and good wishes coming. I certainly need them this week.
Showing posts with label CA 19-9. Show all posts
Showing posts with label CA 19-9. Show all posts
Wednesday, April 25, 2007
Friday, March 30, 2007
Medical Developments this Week
Where to begin? It's been quite a week in the medical department, and I haven't posted because I wanted to have something more concrete to say.
It started Tuesday, when Patty called Dr J, the oncologist's, office to see about my latest CA 19-9 numbers; they always take a few days more than the other bloodwork. So, here's the bad news; my numbers had tripled! From around 768 on March 6, my numbers had climbed to 2,099. Ouch! So, we were worried, and the doctor was concerned about getting a fuller picture. He and I hadn't met face to face since February, and he wanted me to come into the office this week. I made an appointment for this morning, and his nurse, Sue, also let us know that they would cancel the port appointment until we had a plan for moving ahead.
We met with Dr J this morning, and I told him I'd done okay since the infusion last week. My biggest complaints are still lack of appetite, nausea, fatigue, and this week, constipation. The implant - spot - in my side has been sore, and feels bigger and harder, which is really, really worrisome. If that tumor is growing, what's happening inside? As we talked about my side effects, and our vacation, Dr. J commented that I'm very positive about everything . . . He also said that he's concerned that the current chemo regimen is not working. (I share that concern.)
He presented us with a few options. The first was to try a pill that's a biologic agent, called sorafanib. Some folks get good results, but it can take a few weeks to kick in. The second was to shift chemo drugs to a combination of gemcitabine (Gemzar) and cisplatin. They are both delivered by infusion, so no pills. There have been more studies of these two drugs with
gallbladder cancer, and some folks have had good response to them. The third option was a less aggressive chemo drug, taxotere.
Because I've been concerned about the tumor growing, I wanted to go for the most aggressive treatment, which is the two-drug chemo combination. So, we're going to do an infusion next Wednesday (both drugs), and then again the following week (just cisplatin), then a week off. Somewhere in there, I'll have the port put in, since the Gemzar is difficult for veins to tolerate. I just have to wait to get a new appointment. Have I mentioned that I am powerfully tired of doctor and hospital visits?
My head is spinning a bit tonight with the intensity and all of the changes in plan over the last few days, but the new treatment feels right. I don't want to give either of the tumors any more time to grow than they've already had! Thanks for your continued prayers, good wishes, and, from some of you close by, soup deliveries! It means so much to feel that ongoing support and love as we continue this cancer ride.
It started Tuesday, when Patty called Dr J, the oncologist's, office to see about my latest CA 19-9 numbers; they always take a few days more than the other bloodwork. So, here's the bad news; my numbers had tripled! From around 768 on March 6, my numbers had climbed to 2,099. Ouch! So, we were worried, and the doctor was concerned about getting a fuller picture. He and I hadn't met face to face since February, and he wanted me to come into the office this week. I made an appointment for this morning, and his nurse, Sue, also let us know that they would cancel the port appointment until we had a plan for moving ahead.
We met with Dr J this morning, and I told him I'd done okay since the infusion last week. My biggest complaints are still lack of appetite, nausea, fatigue, and this week, constipation. The implant - spot - in my side has been sore, and feels bigger and harder, which is really, really worrisome. If that tumor is growing, what's happening inside? As we talked about my side effects, and our vacation, Dr. J commented that I'm very positive about everything . . . He also said that he's concerned that the current chemo regimen is not working. (I share that concern.)
He presented us with a few options. The first was to try a pill that's a biologic agent, called sorafanib. Some folks get good results, but it can take a few weeks to kick in. The second was to shift chemo drugs to a combination of gemcitabine (Gemzar) and cisplatin. They are both delivered by infusion, so no pills. There have been more studies of these two drugs with
gallbladder cancer, and some folks have had good response to them. The third option was a less aggressive chemo drug, taxotere.
Because I've been concerned about the tumor growing, I wanted to go for the most aggressive treatment, which is the two-drug chemo combination. So, we're going to do an infusion next Wednesday (both drugs), and then again the following week (just cisplatin), then a week off. Somewhere in there, I'll have the port put in, since the Gemzar is difficult for veins to tolerate. I just have to wait to get a new appointment. Have I mentioned that I am powerfully tired of doctor and hospital visits?
My head is spinning a bit tonight with the intensity and all of the changes in plan over the last few days, but the new treatment feels right. I don't want to give either of the tumors any more time to grow than they've already had! Thanks for your continued prayers, good wishes, and, from some of you close by, soup deliveries! It means so much to feel that ongoing support and love as we continue this cancer ride.
Saturday, February 17, 2007
Day 2 of Chemo - Feeling Better
Thanks for the kind words of support, on and off the blog, about yesterday's tough day post-infusion. Now that it's evening of Day 2, I feel I can say that I'm doing better. I still have an incredible sensitivity to any cold, and feel best when I'm sitting on my comfy chair with blankets on my shoulder and lap.
I'm less nauseous than I was last time on Day 2, and I think it's because of the sea bands. So, I've been able to eat, and took my morning Xeloda without a problem.
I finished a great novel today, High Country, by Nevada Barr. Last summer when we were in the southwest, we discovered her mystery novels because they were sold in the national park stores. Her main character, Anna Pidgeon, is a National Park Service ranger, and every adventure takes place in a different national park. She does a wonderful job of conveying the ambiance of the parks - I love a novel that conveys a powerful sense of place - and there's some kind of mystery to be solved in each one of them. This book is set in Yosemite, which we were scheduled to visit last summer, but didn't because of my hospitalization. I wish I had seen it! Anyway, if you are looking for a consistent, good new author of mysteries, I recommend her books. I started this one a few days ago, and read it through the infusion yesterday, last night and today, and now it's done. I only have one or two more of her mysteries to read.
One other medical note. My tumor marker numbers were back yesterday. My CEA, which had climbed to 14 or so, has dropped to 9. My CA 19-9 was about 310 last month, and has climbed to 492. so, we liked the CEA drop, didn't like the CA 19-9 climb, but . . . ? The nurse did comment that it's possible the CA 19-9 was even higher in these weeks before the chemo kicked in, and that it's on the way down.
So, dear friends, know that I am doing well under the circumstances, and especially well in comparison to yesterday. Thank you for your good thoughts and wishes of strength and prayers.
I'm less nauseous than I was last time on Day 2, and I think it's because of the sea bands. So, I've been able to eat, and took my morning Xeloda without a problem.
I finished a great novel today, High Country, by Nevada Barr. Last summer when we were in the southwest, we discovered her mystery novels because they were sold in the national park stores. Her main character, Anna Pidgeon, is a National Park Service ranger, and every adventure takes place in a different national park. She does a wonderful job of conveying the ambiance of the parks - I love a novel that conveys a powerful sense of place - and there's some kind of mystery to be solved in each one of them. This book is set in Yosemite, which we were scheduled to visit last summer, but didn't because of my hospitalization. I wish I had seen it! Anyway, if you are looking for a consistent, good new author of mysteries, I recommend her books. I started this one a few days ago, and read it through the infusion yesterday, last night and today, and now it's done. I only have one or two more of her mysteries to read.
One other medical note. My tumor marker numbers were back yesterday. My CEA, which had climbed to 14 or so, has dropped to 9. My CA 19-9 was about 310 last month, and has climbed to 492. so, we liked the CEA drop, didn't like the CA 19-9 climb, but . . . ? The nurse did comment that it's possible the CA 19-9 was even higher in these weeks before the chemo kicked in, and that it's on the way down.
So, dear friends, know that I am doing well under the circumstances, and especially well in comparison to yesterday. Thank you for your good thoughts and wishes of strength and prayers.
Sunday, January 14, 2007
Another Damned Spot?
Yes, I think I feel another damned spot in my abdomen, this one a little deeper and a little larger, and also close to my incision. I actually felt this in November, before the other "spot" was removed, but I thought perhaps it was scar tissue. Now I can feel that it's more rounded than it was, that it's grown a bit, and I can see it on the scans from November when I look for it. Curses!
I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!
Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.
These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.
I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!
Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.
These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.
Saturday, December 30, 2006
A Medical Update - My Gallbladder Cancer
I haven't written much about my medical state since the "spot" was removed, and I've been waiting to have a little more information before posting. I also know that some of you, my good friends and family who read this regularly, keep track of my scheduled doctor appointments, so I wanted to describe what's up for January.
First, I'm having a "second opinion" (I think of it more as a consultation) at Dana Farber Cancer Institute in Boston on Friday, January 19. I think of it as a consultation because I don't doubt the diagnosis, although I know that pathologists can be wrong. Mostly, I want to talk with an oncologist who has worked more with gallbladder cancer, just to get a sense of his/her medical opinion about the course of my disease. Patty and I contacted a doctor friend who contacted a doctor colleague at Dana Farber earlier this month asking who is "expert" in this cancer there, or in the U.S. His response was that no one there, or in this country, is expert in gallbladder cancer. (Raising the question several friends have asked: "Is there an expert in gallbladder cancer outside the U.S? I don't have an answer.) Anyway, I've already had all of my records sent to them, and if they had a cancellation in the meantime, I may go for the appointment sooner.
Second, my next CT scan will be Monday, Jan. 22, with my oncologist appointment two days later, on Jan. 24. (Unfortunately for me, with post-scan anxiety, that's the soonest the new oncologist, Dr. J, is willing to see me post-scan.) At that appointment, we'll look at the whole picture and either he'll recommend that we begin treatment, or that we continue "watchful waiting." Of course, those of you who know me know that I'll be coming home that day with the scans, which I'll study on my computer to see what I can see, before the radiologist issues a report.
Third, we have been tracking my tumor marker (through a blood test called CA 19-9) more closely in the weeks since my last scan, largely because of the "spot" and the discovery that it was cancer. Some information about this blood test:
1. Not everyone with gallbladder cancer has this blood test register. Tia told me that her current reading is "3" despite her current mets, and the doctor simply said that the test is meaningless for her.
2. The numbers can get very high when someone is really sick. My numbers were all below 100 before November, I know of folks with readings in the 3,000-4,000 range who are not symptomatic, but have mets, and I have read of folks with readings in the 10,000 range who are very sick.
3. Anything below 37 is considered "normal."
4. My readings have been going up, but not awfully. Here they are:
Nov. 22 - 137
Dec. 4 - 182
Dec. 12 - 190
Dec. 27 - 212
When the oncologist called yesterday with the blood test results, he talked with Patty and I missed him on my cell phone, but he apparently pointed out that this last was about a 10% increase. I personally was hoping my numbers would go down following the removal of the "spot," but that doesn't seem to be happening.
What's next? That depends on the scan on Jan. 22, and how I feel. If the scan indicates visible spread, and my CA 19-9 numbers continue to climb, I will probably begin treatment. If the scan is clean once again, I continue to feel good, and the CA19-9 numbers haven't changed much, then I probably won't begin treatment. There are obviously other possibilities, but we can see what things look like on my next appointment.
On the discussion boards, I've been reading in the last seven months about others with this disease who go downhill rapidly. I see more clearly now why my doctors were apprehensive about our trip to the southwest last summer, three weeks after my surgery and diagnosis. Since gallbladder cancer frequently doesn't respond to chemo at all, I also see why my self-report on how I feel is a real indicator of what should be done medically. Knowing that makes me a little anxious when I don't feel good; then I have to remind myself that I had days when I just didn't feel good before my diagnosis of gallbladder cancer! But it also makes me anxious when I have any digestive drama, and in the last few weeks, I've had a weird sensation in my middle a handful of times that feels like something being constrained, moving through a narrow opening. It's different from indigestion, and it passes pretty quickly, but it makes me worry about my bypass, about the cancer spreading in some way that would interfere with the ability of my GI tract to do its job.
Aside from that anxiety, I am feeling good, with my energy consistent, my body feeling strong, and my spirits generally good. I have two and a half weeks before I'm back on campus (although I have preparation to do for the new semester), and I hope to do some fun, crafty things and to relax a little over that time.
First, I'm having a "second opinion" (I think of it more as a consultation) at Dana Farber Cancer Institute in Boston on Friday, January 19. I think of it as a consultation because I don't doubt the diagnosis, although I know that pathologists can be wrong. Mostly, I want to talk with an oncologist who has worked more with gallbladder cancer, just to get a sense of his/her medical opinion about the course of my disease. Patty and I contacted a doctor friend who contacted a doctor colleague at Dana Farber earlier this month asking who is "expert" in this cancer there, or in the U.S. His response was that no one there, or in this country, is expert in gallbladder cancer. (Raising the question several friends have asked: "Is there an expert in gallbladder cancer outside the U.S? I don't have an answer.) Anyway, I've already had all of my records sent to them, and if they had a cancellation in the meantime, I may go for the appointment sooner.
Second, my next CT scan will be Monday, Jan. 22, with my oncologist appointment two days later, on Jan. 24. (Unfortunately for me, with post-scan anxiety, that's the soonest the new oncologist, Dr. J, is willing to see me post-scan.) At that appointment, we'll look at the whole picture and either he'll recommend that we begin treatment, or that we continue "watchful waiting." Of course, those of you who know me know that I'll be coming home that day with the scans, which I'll study on my computer to see what I can see, before the radiologist issues a report.
Third, we have been tracking my tumor marker (through a blood test called CA 19-9) more closely in the weeks since my last scan, largely because of the "spot" and the discovery that it was cancer. Some information about this blood test:
1. Not everyone with gallbladder cancer has this blood test register. Tia told me that her current reading is "3" despite her current mets, and the doctor simply said that the test is meaningless for her.
2. The numbers can get very high when someone is really sick. My numbers were all below 100 before November, I know of folks with readings in the 3,000-4,000 range who are not symptomatic, but have mets, and I have read of folks with readings in the 10,000 range who are very sick.
3. Anything below 37 is considered "normal."
4. My readings have been going up, but not awfully. Here they are:
Nov. 22 - 137
Dec. 4 - 182
Dec. 12 - 190
Dec. 27 - 212
When the oncologist called yesterday with the blood test results, he talked with Patty and I missed him on my cell phone, but he apparently pointed out that this last was about a 10% increase. I personally was hoping my numbers would go down following the removal of the "spot," but that doesn't seem to be happening.
What's next? That depends on the scan on Jan. 22, and how I feel. If the scan indicates visible spread, and my CA 19-9 numbers continue to climb, I will probably begin treatment. If the scan is clean once again, I continue to feel good, and the CA19-9 numbers haven't changed much, then I probably won't begin treatment. There are obviously other possibilities, but we can see what things look like on my next appointment.
On the discussion boards, I've been reading in the last seven months about others with this disease who go downhill rapidly. I see more clearly now why my doctors were apprehensive about our trip to the southwest last summer, three weeks after my surgery and diagnosis. Since gallbladder cancer frequently doesn't respond to chemo at all, I also see why my self-report on how I feel is a real indicator of what should be done medically. Knowing that makes me a little anxious when I don't feel good; then I have to remind myself that I had days when I just didn't feel good before my diagnosis of gallbladder cancer! But it also makes me anxious when I have any digestive drama, and in the last few weeks, I've had a weird sensation in my middle a handful of times that feels like something being constrained, moving through a narrow opening. It's different from indigestion, and it passes pretty quickly, but it makes me worry about my bypass, about the cancer spreading in some way that would interfere with the ability of my GI tract to do its job.
Aside from that anxiety, I am feeling good, with my energy consistent, my body feeling strong, and my spirits generally good. I have two and a half weeks before I'm back on campus (although I have preparation to do for the new semester), and I hope to do some fun, crafty things and to relax a little over that time.
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