I had chemo yesterday afternoon and got to attend my cancer support group in its entirty in the morning. It was a really good session, and the women in the group are just wonderful.
My oncologist is off on Tuesday afternoon, and when my bloodwork came back with the enzymes up out of the normal range and the white blood cells down, the nurse had me see the on-call doctor. Also, I sometimes have a spastic colon and it has been kicking up lately. I have had some bone pain in my left thigh which may be from the Araness stimulating the bone marrow, or I may have pulled a muscle lifting some heavy bags on Sunday. My platelets are still above normal.
Anyway, I was cleared to have my Gemzar at a lower rate. I had gone back on my Xeloda on the 18th, but by the end of the week, I had tapered off due to my feet swelling. I spoke to the triage nurse this morning and she got me caught up on what to do next. I need to start back on the Xeloda which I did today - the swelling has gone down in my feet. My white blood cells weren't down enough to require medication. I'm to take some Tylenol or Ibuprofen for the leg pain. I took Ibuprofen, and actually it hurt more after that.
And now for some good news. My tumor marker was down to 1544 last week. It has been up over 2,000 for the last six weeks. It went back up to 1800+ this week, but that is consistent with the liver enzymes being up.
I see Dr. Bergen next Wednesday, and he says he's been in touch with Mayo Clinic so I'm anxious to know what he has to say about that.
I have been feeling better this week. Not so tired. My red blood cells were up this week which I think is the result of the Araness shots. Appetite is still good and weight has stayed remarkably steady - about 145 pounds. When my thigh hurts, it does hurt to walk.
I'm getting an Rx for a numbing cream to put on my port before they poke it each week. The ladies in the support group told me about it. The port is great, but it does feel like someone's sticking a thumb tack in you when they access the port. They said the cream keeps it from hurting when the nurse comes at you like pin-the-tail-on-the-donkey.
The weather has been beautiful the last few days - clear, warm, sunny. The snow didn't stunt the leaf colors very much, nor knock the leaves off the trees.
So I'm just up here enjoying the fall and getting back on those meds!
Thanks as always for all your prayers and support.
Sincerely, Caroline
Wednesday, September 27, 2006
Friday, September 22, 2006
Liver's Happy Again. A Foot of Snow Last Night.
I would have posted this morning, but we were without power until this afternoon due to a foot of snow that fell in town overnight. With the leaves still on the trees, the heavy, wet snow broke many tree limbs, and I'm sure took many power lines down with them. We didn't open the bookstore until about 2pm today. I would have posted yesterday, but I was in meetings all day for various things, so I am finally getting to the blog.
I spent the morning unpacking my bag from Denver, and moving summer clothes to the spare bedroom and moving sweaters to the front of the closet. Robert built a fire downstairs, but came upstairs and said his feet were cold. So we crawled in bed with the cats to stay warm and took a nap at lunch time. Robert had checked on the bookstore this morning and sent our employee home because the power was out. He came down again about 2pm to find that there was power on Main Street, but we didn't get it on at home until about 3pm.
Robert took me to chemo on Wednesday in Grand Junction. I was bracing for some bad news as I have felt so crummy lately and was off chemo last week, but my liver enzymes have fallen back into normal ranges and my platelets were actually ABOVE normal. I had been taking Tylenol or Ibuprofen almost everyday last week, and I try to get by with only one or two per pills per day. I didn't know if this would affect my blood chemistry, but apparently not. My red blood cells were still low, so being anemic may have contributed to the flu like symptoms last week. Anyway, we were pleasantly surprised at the results. I did get another shot of Araness to help the red blood cells.
I did look into some clinical trials and spoke to a woman at Mayo Clinic. She told me about an organization called The Emerging Med. They can do searches for clinical trials at no cost. They are also approved by the American Medical Association. Their phone number is 877-601-8601. They have a website at emergingmed.com.
We looked at the website Wednesday with Dr. Bergen. He was impressed with some of the people on their medical advisory board. Dr. Bergen said my bloodwork looks good enough that I could probably go off chemo for a month in order to get into a clinical trial, so we are weighing that option. We'd like to stick with the Xeloda since it seems to be working, but I may not have this opportunity again. Of particular interest is the Avastin & Tarceva trial which the lady from Mayo Clinic said they would be offering. She said she would call me back, but I haven't heard from her.
I have pretty much been told by both the Astra Zeneca people and Mayo Clinic people that I would not be eligible for the AZD2171 trial. (Different clinical trials are sponsored by either the drug comapany or Mayo Clinic.)
I have been feeling better since chemo on Wednesday. The steroids help, and the Araness may be working as well to get the red blood cells back up. I started back on Xeloda on Monday and am tolerating it pretty well.
So that is where I'm at. I made chicken green-chili soup last night, so it'll be nice to have a bowl of that tonight. I better run. I have a store full of people and books to shelve.
Just up here in Colorado, not quite ready for the snow yet. Hope it melts tomorrow! As always, thanks for your prayers and warm wishes!
Sincerely, Caroline
I spent the morning unpacking my bag from Denver, and moving summer clothes to the spare bedroom and moving sweaters to the front of the closet. Robert built a fire downstairs, but came upstairs and said his feet were cold. So we crawled in bed with the cats to stay warm and took a nap at lunch time. Robert had checked on the bookstore this morning and sent our employee home because the power was out. He came down again about 2pm to find that there was power on Main Street, but we didn't get it on at home until about 3pm.
Robert took me to chemo on Wednesday in Grand Junction. I was bracing for some bad news as I have felt so crummy lately and was off chemo last week, but my liver enzymes have fallen back into normal ranges and my platelets were actually ABOVE normal. I had been taking Tylenol or Ibuprofen almost everyday last week, and I try to get by with only one or two per pills per day. I didn't know if this would affect my blood chemistry, but apparently not. My red blood cells were still low, so being anemic may have contributed to the flu like symptoms last week. Anyway, we were pleasantly surprised at the results. I did get another shot of Araness to help the red blood cells.
I did look into some clinical trials and spoke to a woman at Mayo Clinic. She told me about an organization called The Emerging Med. They can do searches for clinical trials at no cost. They are also approved by the American Medical Association. Their phone number is 877-601-8601. They have a website at emergingmed.com.
We looked at the website Wednesday with Dr. Bergen. He was impressed with some of the people on their medical advisory board. Dr. Bergen said my bloodwork looks good enough that I could probably go off chemo for a month in order to get into a clinical trial, so we are weighing that option. We'd like to stick with the Xeloda since it seems to be working, but I may not have this opportunity again. Of particular interest is the Avastin & Tarceva trial which the lady from Mayo Clinic said they would be offering. She said she would call me back, but I haven't heard from her.
I have pretty much been told by both the Astra Zeneca people and Mayo Clinic people that I would not be eligible for the AZD2171 trial. (Different clinical trials are sponsored by either the drug comapany or Mayo Clinic.)
I have been feeling better since chemo on Wednesday. The steroids help, and the Araness may be working as well to get the red blood cells back up. I started back on Xeloda on Monday and am tolerating it pretty well.
So that is where I'm at. I made chicken green-chili soup last night, so it'll be nice to have a bowl of that tonight. I better run. I have a store full of people and books to shelve.
Just up here in Colorado, not quite ready for the snow yet. Hope it melts tomorrow! As always, thanks for your prayers and warm wishes!
Sincerely, Caroline
Thursday, September 14, 2006
Greetings from Denver
Robert & I are in Denver for two reasons. We have a booksellers trade show this week, plus Robert has a booth at the Denver Gem & Mineral Show. Normally, these two events don't fall on the same weekend, but this year they did. So we are dividing and conquering. It was during this book show last year when I first noticed some rather minor symptoms which made me think I might have gall stones. I first went to the doctor last year on September 28th. My life has been quite different since then.
I'm actually playing hooky from the book show at the moment. I should be downstairs at one of the educational seminars, but I'm feeling a little yucky - queasy with flu like symptoms. I probably didn't have enough food in my tummy when I took my morning meds. I've gone off the Xeloda again as my feet started swelling up, peeling, and hurting. I was up to 3/4 of the dosage. I didn't have my Gemzar infusion this week since we were going to be out of town.
We're staying at the Marriott in the Denver Tech Center and I'm enjoying our nice room - the book show is here at this hotel. I hadn't had a chance to check the cholangiocarcinoma.org website or update this blog, so I figured this is a good time to do it. Robert is out at the Merchandise Mart setting up his booth for coloradominerals.com, a website business he has for selling minerals. We're bummed that we had to split up this weekend.
I've been feeling "yucky" a lot lately. Last Sunday, I didn't do my radio show. When I got off work at the bookstore, I just went home and slept. I'm beginning to suspect that the effects of chemo are cumulative. When I first startedwith the Gemzar, I might have one or two days of feeling a little yucky, but now it's most of the week. The queasiness is getting closer to being nausea but not quite. Mostly, I'm just achy, sometimes cold, sometimes hot, headache, tired - like having the flu. Then my feet want to swell up and that can be slightly painful. However, I know compared to a lot chemo regimens, the side effects of mine aren't so bad. I'm actually beginning to like infusion days when I get my steroid pills because I feel good and have lots of energy the day of chemo and the day after. I'm learning that I need to schedule some down time when the slump comes.
Last Saturday, I had a booth at Lupita's Bizarre Bazaar which is a flea market in Ridgway, the town north of Ouray. It is a fun event, and I got to see lots of people. I made $100 selling odds and ends from around the house: hair-thingies (my hair has thinned and is extremely short - don't think I'll wear a ponytiail again); cologne (I just can't wear some fragances now as they make my stomach turn); purses that I love but never carry - I rarely change purses; make-up that came in an Estee Lauder or Clinique gift program (after they've sat in the bathroom for five years you figure you won't use them). The women were all over the cologne and make-up - it was gone in the first hour. I had a good time, but it probalby contributed to my being so tired the next day.
I found out some things about clinical trials, but I'll put that on my next post as some of that info is at home.
Driving over from Ouray to Denver yesterday, the aspens are about 1/3 golden and it was so pretty. I'm takng pictures of the deer at home and hope to post some pictures when I get the roll finished.
Thanks to everyone for your prayers and good wishes.
Just over here in Denver learning some new things about the independent bookstore business.
Sincerely, Caroline
I'm actually playing hooky from the book show at the moment. I should be downstairs at one of the educational seminars, but I'm feeling a little yucky - queasy with flu like symptoms. I probably didn't have enough food in my tummy when I took my morning meds. I've gone off the Xeloda again as my feet started swelling up, peeling, and hurting. I was up to 3/4 of the dosage. I didn't have my Gemzar infusion this week since we were going to be out of town.
We're staying at the Marriott in the Denver Tech Center and I'm enjoying our nice room - the book show is here at this hotel. I hadn't had a chance to check the cholangiocarcinoma.org website or update this blog, so I figured this is a good time to do it. Robert is out at the Merchandise Mart setting up his booth for coloradominerals.com, a website business he has for selling minerals. We're bummed that we had to split up this weekend.
I've been feeling "yucky" a lot lately. Last Sunday, I didn't do my radio show. When I got off work at the bookstore, I just went home and slept. I'm beginning to suspect that the effects of chemo are cumulative. When I first startedwith the Gemzar, I might have one or two days of feeling a little yucky, but now it's most of the week. The queasiness is getting closer to being nausea but not quite. Mostly, I'm just achy, sometimes cold, sometimes hot, headache, tired - like having the flu. Then my feet want to swell up and that can be slightly painful. However, I know compared to a lot chemo regimens, the side effects of mine aren't so bad. I'm actually beginning to like infusion days when I get my steroid pills because I feel good and have lots of energy the day of chemo and the day after. I'm learning that I need to schedule some down time when the slump comes.
Last Saturday, I had a booth at Lupita's Bizarre Bazaar which is a flea market in Ridgway, the town north of Ouray. It is a fun event, and I got to see lots of people. I made $100 selling odds and ends from around the house: hair-thingies (my hair has thinned and is extremely short - don't think I'll wear a ponytiail again); cologne (I just can't wear some fragances now as they make my stomach turn); purses that I love but never carry - I rarely change purses; make-up that came in an Estee Lauder or Clinique gift program (after they've sat in the bathroom for five years you figure you won't use them). The women were all over the cologne and make-up - it was gone in the first hour. I had a good time, but it probalby contributed to my being so tired the next day.
I found out some things about clinical trials, but I'll put that on my next post as some of that info is at home.
Driving over from Ouray to Denver yesterday, the aspens are about 1/3 golden and it was so pretty. I'm takng pictures of the deer at home and hope to post some pictures when I get the roll finished.
Thanks to everyone for your prayers and good wishes.
Just over here in Denver learning some new things about the independent bookstore business.
Sincerely, Caroline
Tuesday, September 05, 2006
Increasing Xeloda and Gemzar Slightly
Robert took me to Grand Junction for chemo today. I got to attend my support group as well where we discussed what we would do if we found out an asteroid would destroy the earth six months from now. I would like to travel, spend more time with family & friends, let someone else save the world, and get one more kitten.
My tumor marker from last week's blood test was down again to 2060. My platelets are back up the normal range - I've been telling them to get back up there plus I visualized my mother hugging me which I think helped. (When I play big band music on my oldies radio show, I tell my listeners that this is for my parents to dance to up in heaven.) My red blood cells were still down so the doctor ordered a shot of Araness (sp?). We increased the Gemzar up to 85% of normal. My liver enzymes creeped up a wee bit this week, so I'm increasing my Xeloda dosage to 75% of normal instead of 50%.
We are still looking into clinical trials for AZD2171, but the only one that I think that will take cholangiocarcinoma (CC) patients is in England which I'm not opposed to - after all, I do want to travel. I also found a clinical trial for Avastin and Tarceva. I know both a CC and a pancreatic cancer patient who have done well with Tarceva. This trial is in Denmark. That'd be cool. If I have to go off all chemo for a month before the trials, we're not so sure that would work - that I can afford that much time off the chemo.
We ordered a headstone for our plot at the cemetery in Ouray County and they are setting it tomorrow. It's actually a bench. We'll have a great view from our spot. We're both going to be cremated and they'll put our ashes in the legs of the bench. I told Robert if he remarried and died before his new wife, to ask her if I could have some of his ashes over in my plot. Hope she won't mind.
The aspen leaves are just beginning to turn, while other trees in town are getting quite yellow. The kids started back to school today and we passed groups of them walking to school as we headed out of town to Grand Junction. We have lots of mule deer that hang out on our street in Ouray and the fawns are losing their white spots. I'll try to get a picture on this blog.
Just up here in Colorado enjoying the last days of summer and talking to my body - the tumors, the chemo, the red blood cells and platelets. I think it helps.
Sincerely, Caroline
My tumor marker from last week's blood test was down again to 2060. My platelets are back up the normal range - I've been telling them to get back up there plus I visualized my mother hugging me which I think helped. (When I play big band music on my oldies radio show, I tell my listeners that this is for my parents to dance to up in heaven.) My red blood cells were still down so the doctor ordered a shot of Araness (sp?). We increased the Gemzar up to 85% of normal. My liver enzymes creeped up a wee bit this week, so I'm increasing my Xeloda dosage to 75% of normal instead of 50%.
We are still looking into clinical trials for AZD2171, but the only one that I think that will take cholangiocarcinoma (CC) patients is in England which I'm not opposed to - after all, I do want to travel. I also found a clinical trial for Avastin and Tarceva. I know both a CC and a pancreatic cancer patient who have done well with Tarceva. This trial is in Denmark. That'd be cool. If I have to go off all chemo for a month before the trials, we're not so sure that would work - that I can afford that much time off the chemo.
We ordered a headstone for our plot at the cemetery in Ouray County and they are setting it tomorrow. It's actually a bench. We'll have a great view from our spot. We're both going to be cremated and they'll put our ashes in the legs of the bench. I told Robert if he remarried and died before his new wife, to ask her if I could have some of his ashes over in my plot. Hope she won't mind.
The aspen leaves are just beginning to turn, while other trees in town are getting quite yellow. The kids started back to school today and we passed groups of them walking to school as we headed out of town to Grand Junction. We have lots of mule deer that hang out on our street in Ouray and the fawns are losing their white spots. I'll try to get a picture on this blog.
Just up here in Colorado enjoying the last days of summer and talking to my body - the tumors, the chemo, the red blood cells and platelets. I think it helps.
Sincerely, Caroline
Saturday, September 02, 2006
Liver Enzymes Up Slightly
I went for chemo last Thursday. First, I got my stitches taken out from the port implantation. The port does make things so much easier for blood draws and infusions - I'm so glad I had it done. My bloodwork was about the same as before. My red blood cells and platelets were up just a notch, but still low. So I got 75% of the normal Gemzar infusion.
My liver enzymes were up slightly. I've been taking Tylenol to deal with the achy, flu-like symptoms of chemo, yet it is hard on your liver, and Dr. Bergen said that could account for the slight bump. Aspirin and Ibuprofen are not options as they cause your platelets to drop and mine are running low.
We are looking into clinical trials for AZD2171 which is supposed to be the next generation of Avastin. Unfortunately, there doesn't seem to be anything offered in the States that a cholangiocarcinoma patient would be eligible for. However, there is a trial in England which is testing AZD2171 and high blood pressure side effects. We may also look into applying for compassionate use of AZD2171.
Robert & I had a quick trip over to Denver Thursday night. We had a delicious dinner at a vegetarian Asian restaurant with Robert's son. Then we watched the MTV Video Awards with Ian so he could explain to us who everyone was and whether he thought they were any good. We went to our mineral sale on Friday morning. They had a bunch of books, too, so we came back with a truckload of rocks and new titles for my used book section.
There's lots of people in Ouray for Labor Day. I'm at the bookstore, and we have a local author reception tomorrow. I invited six local authors and two others are attending as well.
I felt good the last two days which is typical as they give you steroids before the chemo. I had a hard time sleeping Thursday night and took a Benadryl to help, but it didn't do much. Today, I'm feeling my chemo slump, but I toook Tylenol at lunch and it helps. Kelsey, our young high school employee, worked today, and I was able to process a lot of the used books into inventory.
I will do chemo next week on Tuesday which means I can go to the Grand Junction support group again, and I'm looking forward to that!
Just up here in Colorado, talking to my platelets and red blood cells, telling them to get back up there!
Sincerely, Caroline
My liver enzymes were up slightly. I've been taking Tylenol to deal with the achy, flu-like symptoms of chemo, yet it is hard on your liver, and Dr. Bergen said that could account for the slight bump. Aspirin and Ibuprofen are not options as they cause your platelets to drop and mine are running low.
We are looking into clinical trials for AZD2171 which is supposed to be the next generation of Avastin. Unfortunately, there doesn't seem to be anything offered in the States that a cholangiocarcinoma patient would be eligible for. However, there is a trial in England which is testing AZD2171 and high blood pressure side effects. We may also look into applying for compassionate use of AZD2171.
Robert & I had a quick trip over to Denver Thursday night. We had a delicious dinner at a vegetarian Asian restaurant with Robert's son. Then we watched the MTV Video Awards with Ian so he could explain to us who everyone was and whether he thought they were any good. We went to our mineral sale on Friday morning. They had a bunch of books, too, so we came back with a truckload of rocks and new titles for my used book section.
There's lots of people in Ouray for Labor Day. I'm at the bookstore, and we have a local author reception tomorrow. I invited six local authors and two others are attending as well.
I felt good the last two days which is typical as they give you steroids before the chemo. I had a hard time sleeping Thursday night and took a Benadryl to help, but it didn't do much. Today, I'm feeling my chemo slump, but I toook Tylenol at lunch and it helps. Kelsey, our young high school employee, worked today, and I was able to process a lot of the used books into inventory.
I will do chemo next week on Tuesday which means I can go to the Grand Junction support group again, and I'm looking forward to that!
Just up here in Colorado, talking to my platelets and red blood cells, telling them to get back up there!
Sincerely, Caroline
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