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 Gemzar. Show all posts
Showing posts with label Gemzar. Show all posts
Wednesday, April 25, 2007
Saturday, April 21, 2007
A Successful Day at the Hospital
This is an update on yesterday's two appointments at the hospital - one for chemo, and one to have the port inserted. The amazingly good first news is that my blood work was good. The numbers were slightly reduced, which is expected for someone on chemo, but were "excellent" in the eyes of the chemo nurse, especially given how I've been feeling. Dr. J, the oncologist, said it must just be the chemo itself leaving me so wiped out.
With good bloodwork, we proceeded with the infusion of Gemzar, the only drug for them to administer mid-cycle. I'm hoping with just the one that I will not be as wiped out over the next two weeks, when I go back for the whopping dose of the two. (And even then, Dr. J said he would reduce the dosage by 15-20% to help alleviate the side effects.) I was grateful for the saline and sugar infusions I got with the Gemzar, since the surgical procedure scheduled for the afternoon meant I had had nothing to eat or drink since midnight. And I was thirsty!
After the chemo, we went down a few floors in the building to day surgery and I was prepped for the insertion of the port (Port-a-Cath). We got to see Dr. M, my favorite surgeon, and to update him on my state. We are all now most worried about my liver, and the bile flowing from it. Dr. M created a bypass in May which has worked fine, but the tumor in my abdomen is pushing against it, and may be restricting the flow of bile. Everyone thinks I'm a little jaundiced, and my bilirubin reading was up two weeks ago. We didn't get the results from yesterday's bloodwork on the bilirubin, but if the bypass gets blocked, I am looking at a stent to keep it flowing.
The insertion of the port went really smoothly; I was in and out in no time, and without any soreness until a little later in the afternoon. Dr. M said he was able to insert a "small" one, so once it's healed, it probably won't even show in my ball gown! (Very funny since I can't even remember when I would last have worn something of that description!) But, lovely that he was thinking about me and how it would look. I do wear bathing suits! With a 12:30 appointment for pre-op, we were on the road by 4:30, and that included time to wait for a chest x-ray following the procedure to make sure everything looked good.
So, next chemo day, my port will be used to draw blood, and to infuse the drugs, which apparently makes it all go much more easily. Today, I feel good (yes, it could be partly the steroids to fight the nausea), and I'm enjoying our seasonably warm weather and bright sunshine.
With good bloodwork, we proceeded with the infusion of Gemzar, the only drug for them to administer mid-cycle. I'm hoping with just the one that I will not be as wiped out over the next two weeks, when I go back for the whopping dose of the two. (And even then, Dr. J said he would reduce the dosage by 15-20% to help alleviate the side effects.) I was grateful for the saline and sugar infusions I got with the Gemzar, since the surgical procedure scheduled for the afternoon meant I had had nothing to eat or drink since midnight. And I was thirsty!
After the chemo, we went down a few floors in the building to day surgery and I was prepped for the insertion of the port (Port-a-Cath). We got to see Dr. M, my favorite surgeon, and to update him on my state. We are all now most worried about my liver, and the bile flowing from it. Dr. M created a bypass in May which has worked fine, but the tumor in my abdomen is pushing against it, and may be restricting the flow of bile. Everyone thinks I'm a little jaundiced, and my bilirubin reading was up two weeks ago. We didn't get the results from yesterday's bloodwork on the bilirubin, but if the bypass gets blocked, I am looking at a stent to keep it flowing.
The insertion of the port went really smoothly; I was in and out in no time, and without any soreness until a little later in the afternoon. Dr. M said he was able to insert a "small" one, so once it's healed, it probably won't even show in my ball gown! (Very funny since I can't even remember when I would last have worn something of that description!) But, lovely that he was thinking about me and how it would look. I do wear bathing suits! With a 12:30 appointment for pre-op, we were on the road by 4:30, and that included time to wait for a chest x-ray following the procedure to make sure everything looked good.
So, next chemo day, my port will be used to draw blood, and to infuse the drugs, which apparently makes it all go much more easily. Today, I feel good (yes, it could be partly the steroids to fight the nausea), and I'm enjoying our seasonably warm weather and bright sunshine.
Tuesday, April 17, 2007
Information on Ports
Just as I was preparing to have a port (or port-a-cath) inserted on April 2, one of the other cancer bloggers I read regularly wrote about having her port removed. She even has a photo of what hers looks like, and commentary by a surgeon about the process of inserting and removing ports. If you feel completely in the dark about the whole procedure (as I was), her post is worth reading. That appointment was canceled as we revisited my whole treatment plan, and now I am scheduled to have the port inserted this Friday, April 20. And the best part of the new appointment is that my favorite surgeon, Dr. M, will be doing the insertion.
As I mentioned, my fellow blogger spends some of her post quoting from "Orac" a blogging surgeon/scientist, who writes about ports, and I'm going to borrow from her approach and include some of his information as well.
Orac begins, "In cancer, the goal is different [than in dialysis]. It's shorter term, and the tools used are less permanent. The goal is to give the patient durable vascular access that allows chemotherapy to be given, usually over a few months. Some chemotherapeutic agents are very harsh on the veins, and because of that it's highly useful to place a catheter in a large central vein with high flow. . . . "
Then he describes the port itself: "Finally, there are totally implanted ports (like the Port-a-Cath), where the entire assembly is implanted under the skin, and the port is accessed through a resealable diaphragm using a special needle inserted through the skin. These can be left in place for months or even years and tend to be the first choice for chemotherapy. Unless a patient is thin enough that it's possible to see the outline of the metal part of the port sticking up under the skin, they're basically invisible."
Here's his description of why a patient would want the port inserted: "If you're a cancer patient who needs a prolonged course of chemotherapy, your port is your friend. Your blood can be drawn through it (and you will need frequent blood draws). You can get your chemotherapy through it without painful needlesticks and burning out of veins. As I said before, injecting chemotherapy in to peripheral veins can be quite painful for some drugs, and a port will eliminate that problem. These two things alone can go a long way in improving a cancer patient's quality of life. It is true that ports aren't without their complications. They can become infected and require urgent removal. They can clot, necessitating treatment with clot busting drugs. Sometimes they can cause a clot in the large blood vessel in which they are placed, leading to arm swelling and even facial edema, not to mention urgent removal of the port. There can be rare misadventures where the port catheter breaks and goes flowing off in the bloodstream, requiring angiography to fish it out. However, on the whole, ports do far more good than harm, and, before radiologists started doing these procedures (which they are doing more and more) general surgeons were the ones who put most of them in."
And finally, speaking as a surgeon, he comments that "It's easy for a surgeon to forget that the insertion and removal of a port represent two major milestones in the course of a patient's cancer treatment. The insertion of a port often represents, even more than the scars from surgery, a daily reminder of the patient's disease, and the insertion of that port represents a long-term alteration of the body necessitated by her disease. It's a constant reminder that life is not normal, a cold, metallic foreign body implanted in her body. Every time a woman feels that quarter-sized metal port under the skin, it's telling her that her life is not what it was; she is not the same as she was; she is not "normal." Even though the implanted port may not even be noticeable even if she wears a wide-necked shirt, other than the small scar left from its implantation, the patient knows its there."
Before I read Orac's post, I didn't know that radiologists were sometimes inserting ports, so when they called me to schedule this new appointment, I said I wanted a surgeon, and I wanted Dr. M. (The chemo nurse, with 25 years of experience, had mentioned that he puts in "superb" ports!) It will be good to have a familiar face before the procedure, and to update him on my state overall. This procedure is done under "conscious awake" sedation, not general anesthesia.
The plan for Friday is to have blood drawn and tested first thing at 10:00 a.m., and to hope that all of my blood numbers are high enough for chemo and then the port insertion. I'm scheduled to have just the Gemzar infused (not the cisplatin), and then, my appointment for the port is at 12:30. The kids are on school vacation this week, and my good friend Sandy is going to accompany me to the appointments while Patty keeps track of the kids.
Today I was going to go into Boston to teach, but just couldn't muster the energy, so my classes are being covered again. Next week is the last week of classes, so things are wrapping up, and I have lots of papers to grade still. I'm glad the semester is ending, as being a full-time faculty member and a full-time cancer patient has been very challenging over these months.
As I mentioned, my fellow blogger spends some of her post quoting from "Orac" a blogging surgeon/scientist, who writes about ports, and I'm going to borrow from her approach and include some of his information as well.
Orac begins, "In cancer, the goal is different [than in dialysis]. It's shorter term, and the tools used are less permanent. The goal is to give the patient durable vascular access that allows chemotherapy to be given, usually over a few months. Some chemotherapeutic agents are very harsh on the veins, and because of that it's highly useful to place a catheter in a large central vein with high flow. . . . "
Then he describes the port itself: "Finally, there are totally implanted ports (like the Port-a-Cath), where the entire assembly is implanted under the skin, and the port is accessed through a resealable diaphragm using a special needle inserted through the skin. These can be left in place for months or even years and tend to be the first choice for chemotherapy. Unless a patient is thin enough that it's possible to see the outline of the metal part of the port sticking up under the skin, they're basically invisible."
Here's his description of why a patient would want the port inserted: "If you're a cancer patient who needs a prolonged course of chemotherapy, your port is your friend. Your blood can be drawn through it (and you will need frequent blood draws). You can get your chemotherapy through it without painful needlesticks and burning out of veins. As I said before, injecting chemotherapy in to peripheral veins can be quite painful for some drugs, and a port will eliminate that problem. These two things alone can go a long way in improving a cancer patient's quality of life. It is true that ports aren't without their complications. They can become infected and require urgent removal. They can clot, necessitating treatment with clot busting drugs. Sometimes they can cause a clot in the large blood vessel in which they are placed, leading to arm swelling and even facial edema, not to mention urgent removal of the port. There can be rare misadventures where the port catheter breaks and goes flowing off in the bloodstream, requiring angiography to fish it out. However, on the whole, ports do far more good than harm, and, before radiologists started doing these procedures (which they are doing more and more) general surgeons were the ones who put most of them in."
And finally, speaking as a surgeon, he comments that "It's easy for a surgeon to forget that the insertion and removal of a port represent two major milestones in the course of a patient's cancer treatment. The insertion of a port often represents, even more than the scars from surgery, a daily reminder of the patient's disease, and the insertion of that port represents a long-term alteration of the body necessitated by her disease. It's a constant reminder that life is not normal, a cold, metallic foreign body implanted in her body. Every time a woman feels that quarter-sized metal port under the skin, it's telling her that her life is not what it was; she is not the same as she was; she is not "normal." Even though the implanted port may not even be noticeable even if she wears a wide-necked shirt, other than the small scar left from its implantation, the patient knows its there."
Before I read Orac's post, I didn't know that radiologists were sometimes inserting ports, so when they called me to schedule this new appointment, I said I wanted a surgeon, and I wanted Dr. M. (The chemo nurse, with 25 years of experience, had mentioned that he puts in "superb" ports!) It will be good to have a familiar face before the procedure, and to update him on my state overall. This procedure is done under "conscious awake" sedation, not general anesthesia.
The plan for Friday is to have blood drawn and tested first thing at 10:00 a.m., and to hope that all of my blood numbers are high enough for chemo and then the port insertion. I'm scheduled to have just the Gemzar infused (not the cisplatin), and then, my appointment for the port is at 12:30. The kids are on school vacation this week, and my good friend Sandy is going to accompany me to the appointments while Patty keeps track of the kids.
Today I was going to go into Boston to teach, but just couldn't muster the energy, so my classes are being covered again. Next week is the last week of classes, so things are wrapping up, and I have lots of papers to grade still. I'm glad the semester is ending, as being a full-time faculty member and a full-time cancer patient has been very challenging over these months.
Wednesday, April 04, 2007
"Shrink That Tumor!" - New Chemo Regimen
I had my infusions of the two new chemo drugs today, and tonight I'm doing okay. In fact, I feel better than I have after the previous three infusions (of oxaliplatin), and I was worried about feeling worse because there were two drugs instead of one. I found out that the decadron they infuse as an anti-nausea med is a steroid, and some folks get a bit of a buzz from the drug. I definitely didn't notice any such thing the other times! Since the new chemos are more likely to cause nausea, I also have some decadron to take orally over the next few days.
We had a long day in Boston, arriving around 10:00 to have blood drawn and a urine sample taken. My urine had been discolored, and I wanted to have them check for bilirubin in my urine. (This would not be a good thing, because it would mean that the tumor is messing with my bypass that delivers the bile from my liver.) They lost the first sample, and I gave them another one later, and the final word was no bilirubin in my urine. Good news. The color was blood (from the stent) and there was no sign of infection.
My bloodwork was good, and we moved toward the infusions, but it was 12:30 before they began. I had infusions first of cisplatin, and then the Gemzar (gemcitabine). The second drug is more likely to cause soreness in the arm. Despite that, I handled the chemo into my arm pretty well. Since my port appointment for this past Monday was cancelled, I have rescheduled. More details below!
We were finally finished with the infusions at 4:00, and then I saw Dr. J, the oncologist. He says that this chemo regimen is more likely to mess with my blood counts, so rather than an infusion every week for two weeks, with a week off, he's suggesting two weeks between infusions, with only the gemcitabine on the mid-infusion.
In two weeks, then, on April 20, I'll go for an infusion of the gemcitabine, and that afternoon, I have an appointment to have the port surgically placed by my favorite surgeon, Dr. M! It will be a long day, but we'll have taken care of the port finally.
I have coverage for tomorrow's classes, so I can stay home and sit in my favorite chair, which tends to be all I feel like doing the day after chemo. And if I have some extra energy, I'll grade some of those overdue papers!
At the end of this long day, I realized how much we need to shrink that tumor so that I can worry a bit less about my innards, and gain more time feeling good and able to live my life. So - new motto - "Shrink That Tumor!" No more messing around - We want you out of there! If any of you think of a good song, or hip-hop rhythm to go with the sentiment, pass it on! Thanks as always to those of you who read and respond and send loving, healing energy.
We had a long day in Boston, arriving around 10:00 to have blood drawn and a urine sample taken. My urine had been discolored, and I wanted to have them check for bilirubin in my urine. (This would not be a good thing, because it would mean that the tumor is messing with my bypass that delivers the bile from my liver.) They lost the first sample, and I gave them another one later, and the final word was no bilirubin in my urine. Good news. The color was blood (from the stent) and there was no sign of infection.
My bloodwork was good, and we moved toward the infusions, but it was 12:30 before they began. I had infusions first of cisplatin, and then the Gemzar (gemcitabine). The second drug is more likely to cause soreness in the arm. Despite that, I handled the chemo into my arm pretty well. Since my port appointment for this past Monday was cancelled, I have rescheduled. More details below!
We were finally finished with the infusions at 4:00, and then I saw Dr. J, the oncologist. He says that this chemo regimen is more likely to mess with my blood counts, so rather than an infusion every week for two weeks, with a week off, he's suggesting two weeks between infusions, with only the gemcitabine on the mid-infusion.
In two weeks, then, on April 20, I'll go for an infusion of the gemcitabine, and that afternoon, I have an appointment to have the port surgically placed by my favorite surgeon, Dr. M! It will be a long day, but we'll have taken care of the port finally.
I have coverage for tomorrow's classes, so I can stay home and sit in my favorite chair, which tends to be all I feel like doing the day after chemo. And if I have some extra energy, I'll grade some of those overdue papers!
At the end of this long day, I realized how much we need to shrink that tumor so that I can worry a bit less about my innards, and gain more time feeling good and able to live my life. So - new motto - "Shrink That Tumor!" No more messing around - We want you out of there! If any of you think of a good song, or hip-hop rhythm to go with the sentiment, pass it on! Thanks as always to those of you who read and respond and send loving, healing energy.
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.
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