After the third of three doses of Abraxane (one cycle) on Monday, the port removal site hurt very seriously and so did my throat. Maybe a six on my personal one to ten scale?
Enough so that I hardly slept that night, even after taking three hydrocodone tabs. I thought maybe Rik had shared a cold with me since my throat felt scratchy. On Tuesday I waited for my afternoon appointments to get Neulasta and to see the wound care nurse. By then it still hurt a lot and with the nurse poking around it hurt even more. I took more hydrocodone after she finished, she called Dr G, and I went to see him.
Dr G ordered an xray to be sure the PICC line was still good, which evidently it is. He decided that all the sore skin, even in my throat, was due to Abraxane. It might be that I've finally had my personal maximum of taxanes. However, he was very excited about news from the American Society of Clinical Oncologists' conference and has a clinical trial in mind for me regarding microsatellite instability and doing a different genetic testing of my cancer. (There will be an article in the New England Journal of Medicine on this but he read an early online version on Monday. ASCO is amazing, Dr G is amazing, and I have no idea how he remembers it all. He didn't even know he would see me on Tuesday!) We also briefly discussed androgen receptor testing.
We've talked about Keytruda and Opdivo, the new drugs given to melanoma and colorectal patients with amazing success. They're related to treating microsatellite instability. It's a whole new world of medicine out there again!
In the meantime I put on a fentanyl patch for the pain, swished some GelClair and tried to gargle to reach the pain in the back of my throat. I didn't ask permission but did 'fess up to The Amazing & Wonderful Nurse Jacque. She can confer with Dr G and tell me to back off but it did hurt SO MUCH and now I feel better.
As Dr G has said from the beginning of our relationship, if I can hold on long enough there will always be something new coming down the road. Luckily for me, my indolent (i.e. lazy, slow-growing) cancer has given me almost thirteen years of life with metastatic disease.
Showing posts with label abraxane. Show all posts
Showing posts with label abraxane. Show all posts
June 03, 2015
February 11, 2015
Stable
Last week's scans show mostly stable disease, especially a reduction of tumor growth in my liver. The radiologist's report on the brain MRI seems inconclusive. Dr G may change my treatment simply because the Abraxane is becoming more toxic and lowering my counts too far. More news next week....
October 09, 2014
From one holiday to the next
It always feels as thought autumn is full of holidays and holy days. From starting a new year to the Great I'm Sorry (aka Yom Kippur) and then sliding into the harvest fest of Sukkot, it's one celebration after another. Unless you have metastatic cancer.
Ringing in the new year was fun and spiritually satisfying. Yom Kippur was more challenging: the rush to eat dinner at 4:30 pm in order to be at synagogue by 5:45 pm; the long 25 hour fast; the inner cleansing and asking for forgiveness; remembering those we've lost; and finally a great hullaballoo at the end when we're practically dancing in the aisles during the final shofar blast.
The break-fast felt quiet after so much energy spent during the day. The next morning, Rik put up our sukkah (temporary shanty) with help from friends, and more friends came over to decorate it. My sukkah, now in it's 22nd year, looks like a lifetime of memories from our twenty years of marriage and even before.
But this Abraxane is beginning to wear me down. On Monday I felt fine, but got hit with diarrhea immediately upon arriving home. Tuesday I could barely get out of bed; it was just as well that Rik needed the car all day. Wednesday and today have been better but not terrific. I expect next week's chemo to hit me as hard. That will be the third dose in this second round.
So now I'm going to try to relax, cuddle with the dogs, maybe watch some TV or read a book. I'm already in my jammies.
Ringing in the new year was fun and spiritually satisfying. Yom Kippur was more challenging: the rush to eat dinner at 4:30 pm in order to be at synagogue by 5:45 pm; the long 25 hour fast; the inner cleansing and asking for forgiveness; remembering those we've lost; and finally a great hullaballoo at the end when we're practically dancing in the aisles during the final shofar blast.
The break-fast felt quiet after so much energy spent during the day. The next morning, Rik put up our sukkah (temporary shanty) with help from friends, and more friends came over to decorate it. My sukkah, now in it's 22nd year, looks like a lifetime of memories from our twenty years of marriage and even before.
But this Abraxane is beginning to wear me down. On Monday I felt fine, but got hit with diarrhea immediately upon arriving home. Tuesday I could barely get out of bed; it was just as well that Rik needed the car all day. Wednesday and today have been better but not terrific. I expect next week's chemo to hit me as hard. That will be the third dose in this second round.
So now I'm going to try to relax, cuddle with the dogs, maybe watch some TV or read a book. I'm already in my jammies.
September 22, 2014
Chemo update
I finished the third dose of Abraxane last week and this morning I noticed that my hair has started to fall out. Right on time, I suppose. I made an appointment for tomorrow morning with the hairdresser to buzz cut my hair and trim my wig. I may want to buy a second wig in a slightly different color. My wig, which cost a lot of money and is artificial, is much darker than my hair color now after a summer in the sun.
Other than hair loss, the side effect from Abraxane that bothers me is the increase in neuropathy in my feet and its beginning in my fingertips.
My fingertips aren't painful, just a little sensitive. The neuropathy hasn't spread further down my feet; it's still confined to my toes, but the intensity has sharpened dramatically. I will try to get in to see an acupuncturist.
My feet hurt so much most nights that it can take me about four hours to fall asleep naturally. If I need to be up and active early in the morning, I take Ambien and hope that it gives me a full night's sleep. I just don't want to be dependent on it. So I'm learning to get by with less sleep.
I'll try to remember to post a photo tomorrow after my buzz cut. Hopefully the hairdresser will leave a little hair, maybe half an inch in length, so that I'll look trendy instead of bald.
And I am so thankful that I had my eyebrows tattooed a couple of years ago! Now I won't see a space alien, or a balding brother, when I look in the mirror.
Other than hair loss, the side effect from Abraxane that bothers me is the increase in neuropathy in my feet and its beginning in my fingertips.
My fingertips aren't painful, just a little sensitive. The neuropathy hasn't spread further down my feet; it's still confined to my toes, but the intensity has sharpened dramatically. I will try to get in to see an acupuncturist.
My feet hurt so much most nights that it can take me about four hours to fall asleep naturally. If I need to be up and active early in the morning, I take Ambien and hope that it gives me a full night's sleep. I just don't want to be dependent on it. So I'm learning to get by with less sleep.
I'll try to remember to post a photo tomorrow after my buzz cut. Hopefully the hairdresser will leave a little hair, maybe half an inch in length, so that I'll look trendy instead of bald.
And I am so thankful that I had my eyebrows tattooed a couple of years ago! Now I won't see a space alien, or a balding brother, when I look in the mirror.
September 04, 2014
Abraxane again
Yesterday I had my first dose of Abraxane in this third round of that chemo. Today I feel fine, maybe had the tiniest queasy tummy last night so took some Zofran just in case.
However, my day at Swedish was too long. I arrived at 130 on time, at 230 a nurse came out with the consent form which I was supposed to sign with Dr G but of course we didn't do this since I've had Abraxane twice before.
Got called back to a chair at 245. Then my port wouldn't give any blood return no matter which way I positioned myself or coughed. At 3:45 I sent Rik home to relax after his first day at school, feed and walk the dogs, etc. I received a dose of alteplase, a drug which can unclog a stuffed up port. An hour later, thankfully good blood return! In the meantime I ate a soggy egg salad sandwich from the bagged lunches and enjoyed a cherry turnover Rik brought up for me.
By 4:45 pm I was so tired of waiting that I asked the nurses to call Dr G's office and get permission to skip the Avastin, which would have added another hour to the total infusion time. Nurse Jacque called out to him in the hallway, and he said "Okay, but she can go home!" Creative thinking nurse Mary Beth called the pharmacy since the Avastin was already mixed (i.e., ready to give to a patient) and they assured her that they could use it the next day.
I was done with the pre-meds (like I needed steroids at this point, I was so wired), Abraxane and Faslodex. I talked with my mom for a half-hour, read some more, and tried to relax. Rik met me at 6:45, we went home, and by 10:00 I was ready to eat some leftover chicken. I was in bed at 11 with all my drugs to relax me and felt fine today.
I take responsibility for my port causing a longer visit but for a two hour infusion to take five hours seems excessive to me. After my four appointments at Swedish's First Hill Cancer Institute, assuming the Abraxane works well for me, I will schedule all my ongoing infusions at the Ballard campus, which has a much better nurse:patient ratio.
However, my day at Swedish was too long. I arrived at 130 on time, at 230 a nurse came out with the consent form which I was supposed to sign with Dr G but of course we didn't do this since I've had Abraxane twice before.
Got called back to a chair at 245. Then my port wouldn't give any blood return no matter which way I positioned myself or coughed. At 3:45 I sent Rik home to relax after his first day at school, feed and walk the dogs, etc. I received a dose of alteplase, a drug which can unclog a stuffed up port. An hour later, thankfully good blood return! In the meantime I ate a soggy egg salad sandwich from the bagged lunches and enjoyed a cherry turnover Rik brought up for me.
By 4:45 pm I was so tired of waiting that I asked the nurses to call Dr G's office and get permission to skip the Avastin, which would have added another hour to the total infusion time. Nurse Jacque called out to him in the hallway, and he said "Okay, but she can go home!" Creative thinking nurse Mary Beth called the pharmacy since the Avastin was already mixed (i.e., ready to give to a patient) and they assured her that they could use it the next day.
I was done with the pre-meds (like I needed steroids at this point, I was so wired), Abraxane and Faslodex. I talked with my mom for a half-hour, read some more, and tried to relax. Rik met me at 6:45, we went home, and by 10:00 I was ready to eat some leftover chicken. I was in bed at 11 with all my drugs to relax me and felt fine today.
I take responsibility for my port causing a longer visit but for a two hour infusion to take five hours seems excessive to me. After my four appointments at Swedish's First Hill Cancer Institute, assuming the Abraxane works well for me, I will schedule all my ongoing infusions at the Ballard campus, which has a much better nurse:patient ratio.
August 29, 2014
Update re Dr G
I saw Dr G a few days ago and learned from the scan reports that my cancer has stayed the same in my brain, but the mets in my liver have grown significantly. My tumor marker also went up by 100 points. So it's definitely time to start another chemo. As Dr G put it, Xeloda clearly worked on my brain, but not so well on my liver. The PET/CT scan also showed a new metastasis in my left elbow, as persistent pain there indicated to me night be the case.
So I start Abraxane with Avastin this week, once a week for three weeks in a row. Somehow we fit Aredia (every three months) and Faslodex (monthly) into the schedule as well.
I feel good, and hope that next week's chemo will start to make a difference quickly!
So I start Abraxane with Avastin this week, once a week for three weeks in a row. Somehow we fit Aredia (every three months) and Faslodex (monthly) into the schedule as well.
I feel good, and hope that next week's chemo will start to make a difference quickly!
August 06, 2014
Cancer update
I really promise to write more about Bulgaria, especially a topic on my mind for about two weeks. My brain calls this subject "A Tramp Abroad," in humble imitation of Mark Twain. But first a cancer update.
I saw Dr G today for the first time in a month. My tumor marker has climbed 50+ points since my last treatment. Since this big a jump is no longer just "noise" to him, Dr G thinks it is time to change treatment. He would like me to try a taxane again because Abraxane worked so well, until increased neuropathy in my feet began to make me stumble when walking. I reminded him that even one dose of Taxol caused my neuropathy to flare out of control.
We compromised on trying Abraxane at a lower dose than last time. I suggested that first he order a PET scan and brain MRI, so that I start the Abraxane with fresh data. I will see Dr G after those scans, get the results, and then we can move forward. I truly love, admire and appreciate how that man listens to me!
In the mean time, I am not to restart Xeloda or methotrexate, but to continue Aromasin daily, and Avastin (every two weeks), Faslodex (once a month) and Aredia (every three months).
According to www.chemocare.com, the following side effects are common (occurring in greater than 30%) for patients taking Abraxane:
Low blood counts (your white and red blood cells may temporarily decrease which can put you at increased risk for infection and/or anemia)
Hair loss
Nausea
Abnormal ECG (electrocardiogram)
Peripheral neuropathy (numbness and tingling of hands and feet)
Arthralgias and myalgias, pain in the joints and muscles (usually temporary occurring 2-3 days after Abraxane, and resolve within a few days)
Weakness and fatigue
Increases in blood tests measuring liver function (these return to normal once treatment is discontinued)
Last time for certain I experienced peripheral neuropathy, hair loss, weakness and fatigue; perhaps now blood counts and nausea (I can't remember and anyone can search my blog for that information). Who knows what will happen this time? My wig and scarves are ready, just in case...
I saw Dr G today for the first time in a month. My tumor marker has climbed 50+ points since my last treatment. Since this big a jump is no longer just "noise" to him, Dr G thinks it is time to change treatment. He would like me to try a taxane again because Abraxane worked so well, until increased neuropathy in my feet began to make me stumble when walking. I reminded him that even one dose of Taxol caused my neuropathy to flare out of control.
We compromised on trying Abraxane at a lower dose than last time. I suggested that first he order a PET scan and brain MRI, so that I start the Abraxane with fresh data. I will see Dr G after those scans, get the results, and then we can move forward. I truly love, admire and appreciate how that man listens to me!
In the mean time, I am not to restart Xeloda or methotrexate, but to continue Aromasin daily, and Avastin (every two weeks), Faslodex (once a month) and Aredia (every three months).
According to www.chemocare.com, the following side effects are common (occurring in greater than 30%) for patients taking Abraxane:
Low blood counts (your white and red blood cells may temporarily decrease which can put you at increased risk for infection and/or anemia)
Hair loss
Nausea
Abnormal ECG (electrocardiogram)
Peripheral neuropathy (numbness and tingling of hands and feet)
Arthralgias and myalgias, pain in the joints and muscles (usually temporary occurring 2-3 days after Abraxane, and resolve within a few days)
Weakness and fatigue
Increases in blood tests measuring liver function (these return to normal once treatment is discontinued)
Last time for certain I experienced peripheral neuropathy, hair loss, weakness and fatigue; perhaps now blood counts and nausea (I can't remember and anyone can search my blog for that information). Who knows what will happen this time? My wig and scarves are ready, just in case...
July 29, 2013
I am a Bad Girl
Sorry I haven't posted more. When I feel well, I tend to be too busy to blog. Here's the recap:
Dr G says my numbers are good. The tumor marker has gone down another 20 points, so I am staying on Xeloda for another month. But somehow I got hooked on the nightly Ativan. Of course, I'd been taking it for about two months... Dr G recommended it as a way to "quiet" my feet at night, by taking 1 mg of Ativan an hour or so before going to bed.
Sadly, Ativan is a bit habit=forming, and after eight weeks, 1 mg was no longer enough to give me good sleep. So now I am dealing with rebound insomnia. I didn't sleep at all for a couple of nights, then took an Ambien, then didn't sleep again at all last night.
My feet continue to feel numb and painful at the toes. The neuropathy is a holdover from almost two years ago when I was on Abraxane. It leaves the body very slowly, in some cases never. So it's lingering in my feet at the toes, the last extremities.
In any case, I've felt well enough to go to synagogue, out to dinner, cook dinner, etc. Yesterday was the start of my second week off Xeloda, and I hope to feel even better and get more sleep!
Dr G says my numbers are good. The tumor marker has gone down another 20 points, so I am staying on Xeloda for another month. But somehow I got hooked on the nightly Ativan. Of course, I'd been taking it for about two months... Dr G recommended it as a way to "quiet" my feet at night, by taking 1 mg of Ativan an hour or so before going to bed.
Sadly, Ativan is a bit habit=forming, and after eight weeks, 1 mg was no longer enough to give me good sleep. So now I am dealing with rebound insomnia. I didn't sleep at all for a couple of nights, then took an Ambien, then didn't sleep again at all last night.
My feet continue to feel numb and painful at the toes. The neuropathy is a holdover from almost two years ago when I was on Abraxane. It leaves the body very slowly, in some cases never. So it's lingering in my feet at the toes, the last extremities.
In any case, I've felt well enough to go to synagogue, out to dinner, cook dinner, etc. Yesterday was the start of my second week off Xeloda, and I hope to feel even better and get more sleep!
November 29, 2011
Dr G says....
1. The brain MRI results were very good and the three lesions are faint.
2. The Abraxane has clearly become too toxic. Plus my CA 27.29 tumor marker is about the same as last time, so it's also no longer as effective. I get to take a two week break from treatment in hope that the side effects (fatigue and neuropathy) ease up.
3. Given the above, he wants me to seek a second opinion from an oncologist at Seattle Cancer Care Alliance. Dr G could think of six potential chemotherapies, and wants the benefit of other wisdom in deciding which one to use next. So I need to help gather all my volumes of medical records from Swedish Medical Center and from Minor and James, which have never been consolidated into one place.
4. I will see Dr G again in two weeks, at which time he wants to start me on something.
Then he showed me a web site with his principles of oncology, but I neglected to get the URL so I can share it with you. They were concise and focused -- just like Dr Goldberg.
Last Dr G gave me a hug, which tells me that he really cares about me as a person, not just as a patient.
2. The Abraxane has clearly become too toxic. Plus my CA 27.29 tumor marker is about the same as last time, so it's also no longer as effective. I get to take a two week break from treatment in hope that the side effects (fatigue and neuropathy) ease up.
3. Given the above, he wants me to seek a second opinion from an oncologist at Seattle Cancer Care Alliance. Dr G could think of six potential chemotherapies, and wants the benefit of other wisdom in deciding which one to use next. So I need to help gather all my volumes of medical records from Swedish Medical Center and from Minor and James, which have never been consolidated into one place.
4. I will see Dr G again in two weeks, at which time he wants to start me on something.
Then he showed me a web site with his principles of oncology, but I neglected to get the URL so I can share it with you. They were concise and focused -- just like Dr Goldberg.
Last Dr G gave me a hug, which tells me that he really cares about me as a person, not just as a patient.
November 02, 2011
Scan results
The results of Monday's PET scan were good -- the liver mets are shrinking and there appear to be no new mets to report. My tumor marker came down from 89.9 at the end of August to 73 today. This is a slower rate of decrease than in the past few months but still a decrease.
Dr G says I should continue on the Abraxane/Avastin. When I reported the change in neuropathy from pain to numbness, and my fears regarding a fall, he told me that it would be a mistake to stop now while the cancer is clearly responding to the treatment. If I stopped or he decreased the dose, it might turn cancer cells partially responsive to this treatment into resistant cells. So I will start another cycle of this chemo cocktail next Monday, then re-test my tumor marker in a month. I'll also phase out the gabapentin and start taking Lyrica for the neuropathy. Maybe this new drug will give me better protection from increasing neuropathy.
I'll also have a follow up brian MRI in the next weeks. I am supposed to get this test every three months since the gamma knife follow up in August. I think I'd like to time this scan so that I can get the results when I next see Dr G without having to wait a long time for them.
All in all, this is the kind of good news I like to hear!
Dr G says I should continue on the Abraxane/Avastin. When I reported the change in neuropathy from pain to numbness, and my fears regarding a fall, he told me that it would be a mistake to stop now while the cancer is clearly responding to the treatment. If I stopped or he decreased the dose, it might turn cancer cells partially responsive to this treatment into resistant cells. So I will start another cycle of this chemo cocktail next Monday, then re-test my tumor marker in a month. I'll also phase out the gabapentin and start taking Lyrica for the neuropathy. Maybe this new drug will give me better protection from increasing neuropathy.
I'll also have a follow up brian MRI in the next weeks. I am supposed to get this test every three months since the gamma knife follow up in August. I think I'd like to time this scan so that I can get the results when I next see Dr G without having to wait a long time for them.
All in all, this is the kind of good news I like to hear!
October 26, 2011
Checking In
It's been a tough couple of days, more so than usual.
Monday's chemo took 5.5 hours for a 90 minute infusion. This time Dr G got everything approved and properly "signed" on time, but the Swedish Cancer Institute lab had a machine breakdown and couldn't process my creatinine. They had to send the sample over to the hospital lab and of course that took MUCH longer than usual. I did have company with two friends and went out to lunch afterwards with one of them. Then I came home and crashed hard on the sofa for an hour or so. I am thankful to have next week off treatment.
Tuesday was a continuation of the recent busy days. I woke up early again and then waited most of the morning for an insurance adjuster who didn't have the right appointment time. Next I went to my weekly meeting with the rabbi and synagogue executive director. Then it was off to the podiatrist to get my toe checked out.
Yes, I have another doctor. I thought this was an infection from earlier in the summer, but Dr Lo says it was a toenail curving into the nail bed. I also had him look at my other big toe and he confirmed a fungal infection. So he trimmed back both nails )one more dramatically than the other) and I am to apply an over-the-counter anti-fungal ointment every night until the nail regrows. Maybe this will prevent the fungus from returning, but with my compromised immune system, it's doubtful.
My feet are still painful from the peripheral neuropathy but I also noticed numbness for the first time. Dr Lo the podiatrist says this could be addressed through additional gabapentin or maybe a new medication called Lyrica. I think I tried this last year, because I still have a bottle of it on hand. I will ask Dr G when I see him next week.
Today was spent in front of the computer on a synagogue project, finally going to the grocery store and blowing my nose over and over again. I had a major case of the Avastin bloody and runny nose. I again crashed hard of the sofa and slept for more than an hour with Bobka the dog nestled at my side. Hard to imagine who was happier about it -- him or me.
I have a PET scan on Monday and hope for good results. Either way I plan to tell Dr G about the dramatically increased neuropathy and to ask him to consider a treatment break. It's tough to balance controlling my cancer with keeping a good quality of life, but he is usually receptive to my concerns. And if I can't walk properly, it's hard to have a good QOL.
Monday's chemo took 5.5 hours for a 90 minute infusion. This time Dr G got everything approved and properly "signed" on time, but the Swedish Cancer Institute lab had a machine breakdown and couldn't process my creatinine. They had to send the sample over to the hospital lab and of course that took MUCH longer than usual. I did have company with two friends and went out to lunch afterwards with one of them. Then I came home and crashed hard on the sofa for an hour or so. I am thankful to have next week off treatment.
Tuesday was a continuation of the recent busy days. I woke up early again and then waited most of the morning for an insurance adjuster who didn't have the right appointment time. Next I went to my weekly meeting with the rabbi and synagogue executive director. Then it was off to the podiatrist to get my toe checked out.
Yes, I have another doctor. I thought this was an infection from earlier in the summer, but Dr Lo says it was a toenail curving into the nail bed. I also had him look at my other big toe and he confirmed a fungal infection. So he trimmed back both nails )one more dramatically than the other) and I am to apply an over-the-counter anti-fungal ointment every night until the nail regrows. Maybe this will prevent the fungus from returning, but with my compromised immune system, it's doubtful.
My feet are still painful from the peripheral neuropathy but I also noticed numbness for the first time. Dr Lo the podiatrist says this could be addressed through additional gabapentin or maybe a new medication called Lyrica. I think I tried this last year, because I still have a bottle of it on hand. I will ask Dr G when I see him next week.
Today was spent in front of the computer on a synagogue project, finally going to the grocery store and blowing my nose over and over again. I had a major case of the Avastin bloody and runny nose. I again crashed hard of the sofa and slept for more than an hour with Bobka the dog nestled at my side. Hard to imagine who was happier about it -- him or me.
I have a PET scan on Monday and hope for good results. Either way I plan to tell Dr G about the dramatically increased neuropathy and to ask him to consider a treatment break. It's tough to balance controlling my cancer with keeping a good quality of life, but he is usually receptive to my concerns. And if I can't walk properly, it's hard to have a good QOL.
September 27, 2011
Latest chemo dose
Yesterday I received dose 13 of Abraxane (and some Avastin, but I'm not counting the number of times I've had that drug). All went well, except that Swedish just upgraded the computer system and Dr G and his staff were not ready for it. As Minor and James gets more integrated into the Swedish system, I am sure things will improve. But in the meantime Dr G had a hard time implementing his orders digitally. And he may have been at the Swedish doctors' meeting from 8 - 9 AM when they all got a lesson in the new upgraded system.
So my early 8 AM arrival didn't matter, since Dr G wasn't in his office until after 9:00. I sat in the waiting room from 8:00 until 11:00, reading, doing the crossword puzzle, and chatting with a friend. Luckily, by the time they took me back to the infusion center, my drugs had arrived from the pharmacy and we got started right away. I was finished just after noon, making this the longest chemo day yet at four hours.
I have had a small sore on my tongue for a few days. It was annoying but not really painful. The infection is my toe from a manicure in mid-August has still been bothering me, so Dr G put me on an antibiotic, and I think that has helped the mouth sore as well. It's not bugging me at all and is practically gone.
And for those who recall, I took a mammoth nap the other day, but awoke after only an hour feeling refreshed and ready to go grocery shopping.
Today I started the cooking for the Rosh Hashanah meals we will be sharing with friends. I made zwetschkenkuchen, a cookie-like pastry baked with Italian prune plums. I didn't quite have enough plums for the quantity of pastry, so added some late raspberries and chester berries from our garden. It looks great and smells even better. Thanks H for the recipe! I also made some baked gefilte fish using D's recipe. Tomorrow I will bake the travados.....yum, travados! Many, many thanks to B who shared her family recipe with me several years ago. Although I am not Sephardic, I make these little nut-filled, lemon and honey simmered pastries every new Jewish year.
So my early 8 AM arrival didn't matter, since Dr G wasn't in his office until after 9:00. I sat in the waiting room from 8:00 until 11:00, reading, doing the crossword puzzle, and chatting with a friend. Luckily, by the time they took me back to the infusion center, my drugs had arrived from the pharmacy and we got started right away. I was finished just after noon, making this the longest chemo day yet at four hours.
I have had a small sore on my tongue for a few days. It was annoying but not really painful. The infection is my toe from a manicure in mid-August has still been bothering me, so Dr G put me on an antibiotic, and I think that has helped the mouth sore as well. It's not bugging me at all and is practically gone.
And for those who recall, I took a mammoth nap the other day, but awoke after only an hour feeling refreshed and ready to go grocery shopping.
September 21, 2011
Tired today
I had my second dose (in this round) of Abraxane on Monday. Last week I was really tired on Tuesday, but did all my planned activities and so was out from 10 AM - 2 PM, too long and without lunch. Today I knew I needed to save energy to attend a function tonight but I was so tired I wanted to take a nap after breakfast. Instead I ran a couple of errands and only now am I heading towards the sofa to sleep.
I had a shot of Neulasta on Tuesday so my white blood cell count should be climbing. I don't know if I am anemic or not. I forgot to get a printout of my lab work from Monday.
Hopefully a nap will do the trick.
I had a shot of Neulasta on Tuesday so my white blood cell count should be climbing. I don't know if I am anemic or not. I forgot to get a printout of my lab work from Monday.
Hopefully a nap will do the trick.
September 12, 2011
Chemo Monday
After three weeks off treatment, today I started another round of Abraxane and Avastin. According to Dr G's plan, I will have several rounds of this chemo combo, until my tumor marker reaches normal (30). Right now it's at 85. Then I'll get a PET/CT scan. If all looks good, then two more rounds of treatment before I get a "vacation."
A round of this combo lasts four weeks and looks like this:
Day 1: Abraxane/Avastin
Day 8: Abraxane only
(Day 9: usually a Neulasta shot to boost white blood cell count)
Day 15: Abraxane/Avastin
Day 22: no treatment; recuperate and get ready to start it all over again the next week
Today I also received a monthly injection of Xgeva to strengthen my bones. This is the third such drug I've been on in the past nine years. For the first few years I had a four-hour monthly infusion of Aredia. Next was a one-hour infusion of Zometa. In comparison, the once monthly shot of Xgeva is a huge improvement, at least in terms of time!
Today's treatment went slowly but smoothly. I checked in at 8 AM and after a few minutes' wait, got my lab orders. I walked down to the lab, where I had a short wait until a nurse could access my port and draw blood. Then back upstairs, was called back quickly into a chemo chair but had to wait another 90 minutes until the lab came through with my test results and Dr G could approve my orders. Around 10:00 I finally started the treatment, which lasted until just past noon. Thankfully my good friend G was there to chat the whole time. I STILL cannot wrap my head around the fact that it takes four hours to get through this whole thing every week.
G and I had a delicious lunch at Cafe Presse. (G: zucchini soup with dill and green olive tapenade garnish and baguette. It smelled heavenly. Me: chicken liver pate with mustard, cornichons and dried cherries, butter lettuce salad with hazelnuts and vinaigrette, plus baguette. YUMMY.) I do prefer, on chemo days, to not limit my diet and I eat anything I want.
This lunch might have been a smidge too rich, because I experienced a bit of a queasy tummy while napping this afternoon. However, all was resolved with a bit of dry cracker. I never know if a queasy tummy is due to food intake or chemo but am always prepared at home with ginger ale, crackers, and of course, ondonsetron (anti-nausea medicine).
Because I'd woken up at 6:15 this morning in order to get to treatment on time, I took a marathon two hour nap this afternoon. I awoke slowly, ate that cracker, then fed and walked the dog. Poor Bob, he was short-changed on the walk front today.
Rik is at an evening meeting and after my enormous lunch, I don't feel hungry for dinner. I believe I will take it easy and watch another in the "Harry Potter" movie series. I'm slowly working my way through all seven movies and then will see the last one a second time.
A round of this combo lasts four weeks and looks like this:
Day 1: Abraxane/Avastin
Day 8: Abraxane only
(Day 9: usually a Neulasta shot to boost white blood cell count)
Day 15: Abraxane/Avastin
Day 22: no treatment; recuperate and get ready to start it all over again the next week
Today I also received a monthly injection of Xgeva to strengthen my bones. This is the third such drug I've been on in the past nine years. For the first few years I had a four-hour monthly infusion of Aredia. Next was a one-hour infusion of Zometa. In comparison, the once monthly shot of Xgeva is a huge improvement, at least in terms of time!
Today's treatment went slowly but smoothly. I checked in at 8 AM and after a few minutes' wait, got my lab orders. I walked down to the lab, where I had a short wait until a nurse could access my port and draw blood. Then back upstairs, was called back quickly into a chemo chair but had to wait another 90 minutes until the lab came through with my test results and Dr G could approve my orders. Around 10:00 I finally started the treatment, which lasted until just past noon. Thankfully my good friend G was there to chat the whole time. I STILL cannot wrap my head around the fact that it takes four hours to get through this whole thing every week.
G and I had a delicious lunch at Cafe Presse. (G: zucchini soup with dill and green olive tapenade garnish and baguette. It smelled heavenly. Me: chicken liver pate with mustard, cornichons and dried cherries, butter lettuce salad with hazelnuts and vinaigrette, plus baguette. YUMMY.) I do prefer, on chemo days, to not limit my diet and I eat anything I want.
This lunch might have been a smidge too rich, because I experienced a bit of a queasy tummy while napping this afternoon. However, all was resolved with a bit of dry cracker. I never know if a queasy tummy is due to food intake or chemo but am always prepared at home with ginger ale, crackers, and of course, ondonsetron (anti-nausea medicine).
Because I'd woken up at 6:15 this morning in order to get to treatment on time, I took a marathon two hour nap this afternoon. I awoke slowly, ate that cracker, then fed and walked the dog. Poor Bob, he was short-changed on the walk front today.
Rik is at an evening meeting and after my enormous lunch, I don't feel hungry for dinner. I believe I will take it easy and watch another in the "Harry Potter" movie series. I'm slowly working my way through all seven movies and then will see the last one a second time.
August 31, 2011
Good news!
Monday's CT scan indicated that my liver mets are getting smaller, although there are still seven of them. On top of this, my CA 27.29 tumor marker has fallen yet again from that all-time high of 300, to 150 at the end of June, now at 85! Altogether this means that the Abraxane/Avastin combo is really working.
Dr G says that he wants to keep me on this chemo combo. When my CA 27.29 drops to normal (30), he will order a PET/CT scan to check on where in my body I have active mets. Then he'll order another couple of rounds of chemo before he gives me a "vacation."
Although this was truly good news, it still is hard to face more months of chemo. If my tumor marker continues to fall at this rate, I am predicting about two months of active treatment before a PET/CT scan will be possible. A round of this chemo combo is three weeks on and one week off. Then another couple of months of treatment after a scan. I feel challenged by spending that much more time bald, feeling poorly, with low energy, etc. But if it will kick my cancer into submission, then somehow I will find the inner strength to keep doing it. And all indicators appear to show that this treatment does indeed work for me.
As an aside, I told Dr G about feeling stuffy and having a runny nose for the past two weeks, plus a mouth sore that won't go away. He suspects either I have allergies (hah!) to explain the nose and sinuses, or that I have a viral infection. It's likely not chemo-related, since my white blood cell counts are not low and that's what usually causes mouth sores.
He bumped up my dose of valacyclovir from 500 mg daily to 1000 mg twice a day to wipe out any viral infection. He also recommended Allegra in case it is allergies, but I am reluctant to take that at the same time and have it mask the symptoms. Then I'll never know if I have allergies or a viral infection. (I may have had a viral infection in my mouth and throat last summer. Or it may have been a side effect of the Doxil. We'll never know, since I was treated for both.) Plus I am more anemic than usual, which explains my feeling tired all the time.
All this helped me understand why I felt so bad on our recent Alaska cruise. I really was sick, and no amount of hot water with honey and lemon, using the neti pot, or gargling with a salt water/baking soda solution could really help.
Dr G is giving me another week to recover from whatever is going on in my head and mouth. My next chemo is scheduled for September 12, presuming I feel better.
Dr G says that he wants to keep me on this chemo combo. When my CA 27.29 drops to normal (30), he will order a PET/CT scan to check on where in my body I have active mets. Then he'll order another couple of rounds of chemo before he gives me a "vacation."
Although this was truly good news, it still is hard to face more months of chemo. If my tumor marker continues to fall at this rate, I am predicting about two months of active treatment before a PET/CT scan will be possible. A round of this chemo combo is three weeks on and one week off. Then another couple of months of treatment after a scan. I feel challenged by spending that much more time bald, feeling poorly, with low energy, etc. But if it will kick my cancer into submission, then somehow I will find the inner strength to keep doing it. And all indicators appear to show that this treatment does indeed work for me.
As an aside, I told Dr G about feeling stuffy and having a runny nose for the past two weeks, plus a mouth sore that won't go away. He suspects either I have allergies (hah!) to explain the nose and sinuses, or that I have a viral infection. It's likely not chemo-related, since my white blood cell counts are not low and that's what usually causes mouth sores.
He bumped up my dose of valacyclovir from 500 mg daily to 1000 mg twice a day to wipe out any viral infection. He also recommended Allegra in case it is allergies, but I am reluctant to take that at the same time and have it mask the symptoms. Then I'll never know if I have allergies or a viral infection. (I may have had a viral infection in my mouth and throat last summer. Or it may have been a side effect of the Doxil. We'll never know, since I was treated for both.) Plus I am more anemic than usual, which explains my feeling tired all the time.
All this helped me understand why I felt so bad on our recent Alaska cruise. I really was sick, and no amount of hot water with honey and lemon, using the neti pot, or gargling with a salt water/baking soda solution could really help.
Dr G is giving me another week to recover from whatever is going on in my head and mouth. My next chemo is scheduled for September 12, presuming I feel better.
August 16, 2011
The day after chemo
Part of the reason Monday's chemo was so lengthy is that my standard of treatment is all over the map. As I understand it, the protocol is Abraxane on days 1, 8, and 15; Avastin on days 1 and 15. I think day 28 is supposed to be no treatment. But look at what actually happened!
May's cycle was close to as planned, except that my counts were too low on day 8.
2 Abraxane 1 and Avastin
9 Abraxane cancelled (low counts)
16 Abraxane 2 and Avastin
23 Abraxane 3
30 Abraxane 4 and Avastin
At the end of May/beginning of June, I was diagnosed with shingles and didn't have treatment that entire month. I had the gamma knife procedure on June 21.
July
6 Abraxane 5 (I don't have Avastin marked)
18 Abraxane 6 and Avastin
25 Abraxane 7 (again, I didn't note Avastin)
August
8 Abraxane 8 and Avastin
15 Abraxane 9 and Avastin
No wonder the nurses had trouble understanding why I questioned getting Avastin two weeks in a row! Especially since first thing I asked the lab if I needed to give a urine sample for the Avastin and they told me no, it wasn't necessary. Still, Dr G knows his stuff and he wouldn't have ordered it this way if he thought it would be a problem.
The upshot is that we had a longer day than expected. I indeed had to give a urine sample; we had to wait until the lab finished their work on it; then more waiting for the pharmacy to mix the drugs. Yesterday's chemo nurse was good about giving me the drugs out of protocol order. It was foolish for me to take up a chair while waiting for the Avastin to be prepared when the Abraxane was ready.
I still cannot get used to a 90 minute treatment taking 4.5 hours.
May's cycle was close to as planned, except that my counts were too low on day 8.
2 Abraxane 1 and Avastin
9 Abraxane cancelled (low counts)
16 Abraxane 2 and Avastin
23 Abraxane 3
30 Abraxane 4 and Avastin
At the end of May/beginning of June, I was diagnosed with shingles and didn't have treatment that entire month. I had the gamma knife procedure on June 21.
July
6 Abraxane 5 (I don't have Avastin marked)
18 Abraxane 6 and Avastin
25 Abraxane 7 (again, I didn't note Avastin)
August
8 Abraxane 8 and Avastin
15 Abraxane 9 and Avastin
No wonder the nurses had trouble understanding why I questioned getting Avastin two weeks in a row! Especially since first thing I asked the lab if I needed to give a urine sample for the Avastin and they told me no, it wasn't necessary. Still, Dr G knows his stuff and he wouldn't have ordered it this way if he thought it would be a problem.
The upshot is that we had a longer day than expected. I indeed had to give a urine sample; we had to wait until the lab finished their work on it; then more waiting for the pharmacy to mix the drugs. Yesterday's chemo nurse was good about giving me the drugs out of protocol order. It was foolish for me to take up a chair while waiting for the Avastin to be prepared when the Abraxane was ready.
I still cannot get used to a 90 minute treatment taking 4.5 hours.
August 15, 2011
Chemo #9
We are just back from chemo Abraxane #9 plus Avastin. I am hoping for a nap but wanted to post that all is well, it just took 4.5 hours!
August 08, 2011
Chemo Monday
Today's chemo went smoothly from start to end. My lab orders were awaiting me at the desk; the nurses were on top of everything. On;y one problem -- there was a nurses' meeting at 8 AM and so the one poor woman at the lab, accessing ports, was overwhelmed from the get-go. Then the lab took more than two hours to get all my results up to the infusion center. All in all, we were there about four and a half hours. At least I had good company. A friend from my dancing days in Radost had been in contact and came for a visit on her one day off. We talked nonstop and passed the time beautifully. So despite the long day, I wasn't frustrated.
After another stupendous lunch at Cafe Presse (me: zucchini curry soup garnished with fresh dill and green olive tapenade followed by chocolat chaud with freshly whipped cream; Rik: one egg sunny side up and spinach salad with frites; both of us sharing a baguette), we came home to a little sunshine. I sat outdoors with a blanket over my legs and caught up on Sunday's newspaper and a good book, then went indoors to take a late afternoon nap.
We were both so full from lunch that we could nosh only a little dinner at 8 PM. Now I plan to relax for the rest of the evening.
Quick update on side effects: My eyelashes are mostly still hanging in there, but some have vanished and I don't know how long the rest will last. And I haven't written about lymphedema in a long time. Big Blue, my nighttime arm wrap, continues to do the trick and keep my lymphedema under control.
After another stupendous lunch at Cafe Presse (me: zucchini curry soup garnished with fresh dill and green olive tapenade followed by chocolat chaud with freshly whipped cream; Rik: one egg sunny side up and spinach salad with frites; both of us sharing a baguette), we came home to a little sunshine. I sat outdoors with a blanket over my legs and caught up on Sunday's newspaper and a good book, then went indoors to take a late afternoon nap.
We were both so full from lunch that we could nosh only a little dinner at 8 PM. Now I plan to relax for the rest of the evening.
Quick update on side effects: My eyelashes are mostly still hanging in there, but some have vanished and I don't know how long the rest will last. And I haven't written about lymphedema in a long time. Big Blue, my nighttime arm wrap, continues to do the trick and keep my lymphedema under control.
July 25, 2011
Abraxane #7
I forgot that the Abraxane/Avastin combo is given with both drug sin week one, then Abraxane only in week two, and nothing in week three. Today's chemo went smoothly otherwise, even if I am still not prepared for how long everything takes. First we wait for the lab to have a nurse ready for me, then we wait to be called back into the chemo area, then we wait for the lab to process my blood samples, then we wait for Dr G to approve my counts from the lab, then we wait for the pharmacy to make up my drug. We arrived at the Cancer Institute at 9 AM and were finished at 12:15 PM. That's actually a half hour shorter than when I get the Avastin.
Then we were off to Cafe Presse for lunch. Presse is definitely my favorite restaurant on Capitol Hill. Nothing ever disappoints. Sometime we will have to pre-order the roast chicken (it takes one hour). Rik had the new falafel plate: four crunchy falafel balls on a salad of melons and olives, with in honey-yogurt dressing. I guess this is French food by immigration, since there are so many North African's who have moved to France in recent decades. Plus in the very pork-centric menu, there aren't too many vegetarian options. I had the sandwich en baguette with chicken liver pate and the city's best green salad (butter lettuce with hazelnuts and vinaigrette). Plus we shared an order of extra-crunchy, Belgian style frites. I had no room for the hot chocolat chaud, which believe me I would have enjoyed on this cold, rainy day.
Home for a nap, from which I have just awoken. I am not sure I have room for dinner and may have overeaten at lunch. I am sure some seltzer will take care of that.
All is all, this chemo regimen seems to be pretty manageable. Eyelashes are still hanging in there; we'll see what this week brings. I go back for an injection of Neulasta tomorrow morning to bring my white blood cell counts up.
Then we were off to Cafe Presse for lunch. Presse is definitely my favorite restaurant on Capitol Hill. Nothing ever disappoints. Sometime we will have to pre-order the roast chicken (it takes one hour). Rik had the new falafel plate: four crunchy falafel balls on a salad of melons and olives, with in honey-yogurt dressing. I guess this is French food by immigration, since there are so many North African's who have moved to France in recent decades. Plus in the very pork-centric menu, there aren't too many vegetarian options. I had the sandwich en baguette with chicken liver pate and the city's best green salad (butter lettuce with hazelnuts and vinaigrette). Plus we shared an order of extra-crunchy, Belgian style frites. I had no room for the hot chocolat chaud, which believe me I would have enjoyed on this cold, rainy day.
Home for a nap, from which I have just awoken. I am not sure I have room for dinner and may have overeaten at lunch. I am sure some seltzer will take care of that.
All is all, this chemo regimen seems to be pretty manageable. Eyelashes are still hanging in there; we'll see what this week brings. I go back for an injection of Neulasta tomorrow morning to bring my white blood cell counts up.
July 18, 2011
Quick check in
Today's chemo (Abraxane/Avastin #6) went well, but took far too long. Much as I love Dr G, he wrote today's orders for the wrong date and it took several hours for him to rectify the situation. Meanwhile we waited. And waited. We arrived on time at 11 AM; got the okay to go to the lab at 11:45; were called in for treatment at 12:45 PM and finished everything at 3:45. An brown sugar-buttermilk ice cream with hot fudge sauce at Mollie Moon's afterwards helped relieve some of my frustration. (I allow myself to eat anything I want to on chemo days.)
The highlight has to be a chance encounter with another member of Walnut Hills High School's class of 1977. K and I didn't run in the same circles then, but she recognized me sitting in the waiting room and we had a short chance to catch up. Rik gave her a card and I hope she will be in touch. From what I could gather quickly, she has a breast cancer story to tell also.
The sun is shining in the late afternoon and I wanted some vitamin D straight from the source, so I picked five and a half pints of raspberries. We shared some with neighbors but most will go straight into the freezer. It's been a bumper year for raspberries so far, but Rik has found only a small bowl of strawberries every day or two. There appear to be many chesterberries on the canes and the blueberries are ripening nicely, even with the cool temperatures we've been experiencing lately. I have hopes for at least one tomato that has already fruited, but can say no more about the others. Many flowers, no other fruit yet. It's just not sunny enough this summer.
I feel bad for those of you sweltering on the rest of the continent, but we actually had the heat on last night, it was so cold here.
The highlight has to be a chance encounter with another member of Walnut Hills High School's class of 1977. K and I didn't run in the same circles then, but she recognized me sitting in the waiting room and we had a short chance to catch up. Rik gave her a card and I hope she will be in touch. From what I could gather quickly, she has a breast cancer story to tell also.
 |
| Today's haul |
The sun is shining in the late afternoon and I wanted some vitamin D straight from the source, so I picked five and a half pints of raspberries. We shared some with neighbors but most will go straight into the freezer. It's been a bumper year for raspberries so far, but Rik has found only a small bowl of strawberries every day or two. There appear to be many chesterberries on the canes and the blueberries are ripening nicely, even with the cool temperatures we've been experiencing lately. I have hopes for at least one tomato that has already fruited, but can say no more about the others. Many flowers, no other fruit yet. It's just not sunny enough this summer.
I feel bad for those of you sweltering on the rest of the continent, but we actually had the heat on last night, it was so cold here.
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