We got to the radiation waiting room and were intercepted by the doctor, who sat with us and told us that Manford's CTscan from last Friday showed two new, small tumors near the old tumor site. The tumor is a very active kind, with 30% of cells growing, according to the pathology report; that is very high. The neurosurgeon thinks it would be more risky than not to do surgery at this point, particularly as it would delay the radiation/chemo further. They are replanning the radiation at a higher dose and slightly larger area, for three weeks instead of six. He will continue the temozolomide. According to the doctor, the aim of the radiation is to stop the tumors growing; the chemotherapy has a chance of shrinking them.
We are still processing this unwelcome news; Manford seems to be doing ok; they have increased his steroid dose a bit.
That's all I can say at this point. There is no poetry here at the moment, but I suppose it will come.
Carrie
Thursday, February 25, 2010
Tuesday, February 23, 2010
One down
Manford had his first radiation session yesterday, and it all went fine, though we were there a couple of hours longer than usual to do initial blood work and to try to talk to the doctor about the steriods...but we got the schedule of the next six weeks, and found our way to where we go, and are getting the routine down. His chemotherapy at this point is Temozolomide at a fairly low dose, which is intended to enhance the effect of radiation. It is just a pill (well, three pills, to make the correct dose) he takes an hour before treatment. He is also taking some antinausea medicine, but it may not be necessary in the long run--we'll see.
I made the mistake of sending e-mails to a couple of private college counselors over the weekend, trying to figure out the college selection and application process with Joseph, with no one here who really has any idea about how it works, and wondering how to explain the New Zealand system (which is very different) in college applications...last night one very pushy guy called and talked to me for a half hour straight without doing any discernable listening. I think he asked a couple of questions, but never stopped to hear an answer. If anyone knows a thoughtful college counselor who might listen and think about our specific situation, I would appreciate hearing their name...
Joseph is planning a trip to the US by himself in July--to visit friends and family and colleges, but mostly friends.
Carrie
I made the mistake of sending e-mails to a couple of private college counselors over the weekend, trying to figure out the college selection and application process with Joseph, with no one here who really has any idea about how it works, and wondering how to explain the New Zealand system (which is very different) in college applications...last night one very pushy guy called and talked to me for a half hour straight without doing any discernable listening. I think he asked a couple of questions, but never stopped to hear an answer. If anyone knows a thoughtful college counselor who might listen and think about our specific situation, I would appreciate hearing their name...
Joseph is planning a trip to the US by himself in July--to visit friends and family and colleges, but mostly friends.
Carrie
Saturday, February 20, 2010
Hot pools and sheep shows
We did it--we escaped for nearly 24 hours to Rotorua, just over an hour away, where they are famous for healing hot pools (too bad they smell of sulphur, but there are some advantages to losing your sense of smell, as Manford has, partly--though even he could smell this...) and tourist activities for all tastes. We did not indulge in any bungee jumping or zorbing (rolling down a hill in a giant blow-up ball), but we did eat a nice dinner, soak in the pool overlooking the lake, go to bed very relaxed, and in the morning went to the famous agrodome, where they have a silly show for city people where they sheer a sheep and milk a cow and herd ducks and goof around a lot--we are enough city that we enjoyed it, and it was a beautiful, cool and sunny morning, and we had a good lunch and came home. The children fared well in our absence, Joseph enjoying being at home alone, and Emily with a friend.
Manford starts radiation and chemotherapy on Monday--we have about $10,000 worth of pills in the cupboard, the first month's supply, which cost us $6. Can't complain about that side of it. He has been tapering off steroids (which help to control swelling in the brain) the last few days, maybe a bit too fast, as he has been struggling a bit more today, but generally is doing very well.
Now I'm off to read Harry Potter to Emily.
Carrie
Manford starts radiation and chemotherapy on Monday--we have about $10,000 worth of pills in the cupboard, the first month's supply, which cost us $6. Can't complain about that side of it. He has been tapering off steroids (which help to control swelling in the brain) the last few days, maybe a bit too fast, as he has been struggling a bit more today, but generally is doing very well.
Now I'm off to read Harry Potter to Emily.
Carrie
Tuesday, February 16, 2010
walking uphill
Tuesday here, and yesterday we had an appointment with the oncologist again--he spent about an hour talking with us, explaining about the possible and probable effects of the radiation and chemotherapy. He is very clear and thoughtful, and careful to try to explain well. He said the recent CTscan showed that the surgeon did a really good job, and there is no visible tumor left, which is good. They have a complicated planning process for the radiation, and he showed us that the edge of the tumor is a bit close to the eye socket, and there is some chance that the radiation will damage Manford's tear ducts on one side, but that doesn't sound so bad. He will start on Monday, and have six weeks of weekday radiation and six solid weeks of chemotherapy, which is just a daily capsule, along with some antinausea medication. I have been reading about various other things that could be added on to enhance treatment, and getting myself all confused, but will talk with the doctor about the options; I think he will listen. We plan to go to Rotorua, an hour away, for a night away at a hot pool spa, either Friday or Saturday night, depending on when they can do the pre-treatment MRI.
The kids are holding up ok; Emily picks up on anyone's malaise, and was home from school today with a bug, but really likes her teacher and has been officially appointed rat monitor. Joseph has gotten into Cambridge English and Math, which are kind of like AP classes, with a special extra exam (great fun), and an actual text book for math (ok, it's called "maths" here) that is called "Pure Mathematics" because, Joseph says, there are no pictures. There are definitely no pictures and it looks like serious math. Very few classes use text books here--I think there isn't a bit enough market to write texts just for the New Zealand curriculum, which has just been revised, and they make do with a variety of resources. For Cambridge English he gets to read Jane Eyre and Twelfth Night and The Importance of Being Ernest, along with some poetry. Real high school stuff--he will not appreciate it, but he will have done it. None of this Scarlett Letter or the Crucible American stuff.
Manford and Emily and Charlie and I walked uphill (and over hill) up the street about four blocks each way today, which is a new record, and the next goal is the cheese shop which is just a bit farther. Manford is walking with just a cane now, very distinguished, but we need to get a nicer one, maybe with a flask in it...I'll look on e-bay. But now, Emily is edging toward bedtime and we will start the Prisoner of Azkaban, again.
Carrie
The kids are holding up ok; Emily picks up on anyone's malaise, and was home from school today with a bug, but really likes her teacher and has been officially appointed rat monitor. Joseph has gotten into Cambridge English and Math, which are kind of like AP classes, with a special extra exam (great fun), and an actual text book for math (ok, it's called "maths" here) that is called "Pure Mathematics" because, Joseph says, there are no pictures. There are definitely no pictures and it looks like serious math. Very few classes use text books here--I think there isn't a bit enough market to write texts just for the New Zealand curriculum, which has just been revised, and they make do with a variety of resources. For Cambridge English he gets to read Jane Eyre and Twelfth Night and The Importance of Being Ernest, along with some poetry. Real high school stuff--he will not appreciate it, but he will have done it. None of this Scarlett Letter or the Crucible American stuff.
Manford and Emily and Charlie and I walked uphill (and over hill) up the street about four blocks each way today, which is a new record, and the next goal is the cheese shop which is just a bit farther. Manford is walking with just a cane now, very distinguished, but we need to get a nicer one, maybe with a flask in it...I'll look on e-bay. But now, Emily is edging toward bedtime and we will start the Prisoner of Azkaban, again.
Carrie
Friday, February 12, 2010
Rats
I finally lost patience and called the clinical trials nurse around midday Thursday, and she said that she had been meaning to call...the powers that be in Geneva have apparently decided that gliosarcoma is not included in the clinical trial Manford had hoped to participate in. The doctor called later that day, and he sounded quite disappointed and frustrated, too, but will meet with us on Monday to plan standard treatment, which, as I understand it, will be six weeks of radiation and Temozolomide, then follow-up treatment with Temozolomide for six months. I guess the advantage is they can't complain if we try whatever else might seem to work (e.g., blueberries, visualization, lots of hot mineral spas like they have down every road here, we'll see).
The other rats are that Emily asked, very tentatively, for permission to be a rat monitor...I think this means she will help to take care of the pet rats at school, and occasionally bring them home for the weekend. She didn't think I would approve, but I said I'm a psychologist with a long history of rats...maybe this is a good compromise pet. She has been longing for her own pet for years (Charlie doesn't count), and the worm farm doesn't seem to be filling that role.
The other rats are that Emily asked, very tentatively, for permission to be a rat monitor...I think this means she will help to take care of the pet rats at school, and occasionally bring them home for the weekend. She didn't think I would approve, but I said I'm a psychologist with a long history of rats...maybe this is a good compromise pet. She has been longing for her own pet for years (Charlie doesn't count), and the worm farm doesn't seem to be filling that role.
Thursday, February 11, 2010
Waiting, healing, hoping...
Again, a week has sped by and I have been waiting to write until we hear something about the clinical trial we found out about on Monday, but we are still waiting. Manford is gradually gaining strength each day; yesterday he walked to the bus stop with the OT, and he is more steady and confident around the house. His main problem at this point is low blood pressure--orthostatic hypotension; when he stands up, his blood pressure drops, and he gets a bit shaky, so I am still nervous to leave him alone in case he should fall. Other than that, he is doing well; he says he has a bit more trouble concentrating than usual, but that is going around...
Monday we went to the oncology clinic again and talked to a second oncologist. The first oncologist had spoken to him about Manford after our session, and called me back and said that he had been convinced by this second doctor (who is more specialized in neurooncology) that more aggressive treatment was appropriate, and there was a clinical trial we might be interested in. So Monday afternoon this new doctor (Tills) spent an hour and a half talking with us, and was more optimistic about Manford's chances of responding to chemotherapy than the other. I wonder if this is an age thing...the first doctor, who looked to be in his 30's, considered Manford to have a poorer prognosis (and unlikely to benefit from chemotherapy) because he was over 60...this second doctor, who looks to be in his 50's, put the line up a bit, at 70.
They are starting a clinical trial (based in Canada, but also governed from Geneva) of Avastin, which is a promising new medication that inhibits blood vessel generation. If he participates, Manford would either get the standard treatment, which is 6 weeks of radiation and chemotherapy, or standard treatment plus Avastin, which goes along with the chemotherapy. It is a double blind, so we won't know which he is getting, but he would also get very careful follow-up...but since his tumor is a rare variant of the more typical glioblastoma, someone in Geneva has to decide whether he is even eligible to consider for the study, and we have been waiting to hear the verdict on this. If he isn't eligible, he will still get the standard treatment, and I suppose there will be less hassle with repeat visits (the Avastin requires IV administration every two weeks during radiation and every three weeks after, or something like that).
They started the process of preparation and planning for radiation on Monday, making a plastic mask (out of kind of web, so not as claustrophobia-stimulating as it might be) to immobilize his head, and doing a CT scan, so we were there 3 1/2 hours in all. The clinic is very comfortable--not fancy, but the people are very nice and supportive and there are volunteers everywhere offering cups of tea.
Then Tuesday we had a visit from the nurse from the cancer society, who was also very warm and helpful, and spent two hours with us describing all the kinds of supports they can offer, including transportation to treatment, a brain tumor support group that is starting this month, counseling, information, meals, emergency funding if we needed it (we are lucky and don't, but it is good they have this), visits from the nurse, and maybe a volunteer "bloke" who will come and visit Manford so I can go to the grocery store...
The kids are settled in school; last night was "meet the teacher" night for parents at Emily's school, and I was again impressed by the headmaster, and really liked her teacher. This is good--last year she had a young man who was just too new, and seemed scared to death all the time. She liked him, but I'm glad she has someone with more experience now--Emily seems very happy and seems to be making new friends and not complaining of teasing from boys, which was the big problem last year. And Joseph seems happy to be back at school, in spite of himself, and is delving in to a very techy curriculum (Math, Programming, Chemistry, Physics, English, and PE). In English he is doing some project on how language is used to represent some topic, and has cleverly chosen the topic of video games, so he can say he's doing his homework as he is surrounded by his video game magazines...
So, we wait, and heal, and hope--
Carrie
Monday we went to the oncology clinic again and talked to a second oncologist. The first oncologist had spoken to him about Manford after our session, and called me back and said that he had been convinced by this second doctor (who is more specialized in neurooncology) that more aggressive treatment was appropriate, and there was a clinical trial we might be interested in. So Monday afternoon this new doctor (Tills) spent an hour and a half talking with us, and was more optimistic about Manford's chances of responding to chemotherapy than the other. I wonder if this is an age thing...the first doctor, who looked to be in his 30's, considered Manford to have a poorer prognosis (and unlikely to benefit from chemotherapy) because he was over 60...this second doctor, who looks to be in his 50's, put the line up a bit, at 70.
They are starting a clinical trial (based in Canada, but also governed from Geneva) of Avastin, which is a promising new medication that inhibits blood vessel generation. If he participates, Manford would either get the standard treatment, which is 6 weeks of radiation and chemotherapy, or standard treatment plus Avastin, which goes along with the chemotherapy. It is a double blind, so we won't know which he is getting, but he would also get very careful follow-up...but since his tumor is a rare variant of the more typical glioblastoma, someone in Geneva has to decide whether he is even eligible to consider for the study, and we have been waiting to hear the verdict on this. If he isn't eligible, he will still get the standard treatment, and I suppose there will be less hassle with repeat visits (the Avastin requires IV administration every two weeks during radiation and every three weeks after, or something like that).
They started the process of preparation and planning for radiation on Monday, making a plastic mask (out of kind of web, so not as claustrophobia-stimulating as it might be) to immobilize his head, and doing a CT scan, so we were there 3 1/2 hours in all. The clinic is very comfortable--not fancy, but the people are very nice and supportive and there are volunteers everywhere offering cups of tea.
Then Tuesday we had a visit from the nurse from the cancer society, who was also very warm and helpful, and spent two hours with us describing all the kinds of supports they can offer, including transportation to treatment, a brain tumor support group that is starting this month, counseling, information, meals, emergency funding if we needed it (we are lucky and don't, but it is good they have this), visits from the nurse, and maybe a volunteer "bloke" who will come and visit Manford so I can go to the grocery store...
The kids are settled in school; last night was "meet the teacher" night for parents at Emily's school, and I was again impressed by the headmaster, and really liked her teacher. This is good--last year she had a young man who was just too new, and seemed scared to death all the time. She liked him, but I'm glad she has someone with more experience now--Emily seems very happy and seems to be making new friends and not complaining of teasing from boys, which was the big problem last year. And Joseph seems happy to be back at school, in spite of himself, and is delving in to a very techy curriculum (Math, Programming, Chemistry, Physics, English, and PE). In English he is doing some project on how language is used to represent some topic, and has cleverly chosen the topic of video games, so he can say he's doing his homework as he is surrounded by his video game magazines...
So, we wait, and heal, and hope--
Carrie
Thursday, February 4, 2010
Home!
I'm sorry to have been so silent--I thought I would write when Manford got home, which was yesterday, but then it was one of those days that the Kiwis call "full on," which means one thing after the other and no time for anything.
Manford is home, and walking around quite steadily. I went and picked him up at midday yesterday, while a friend stayed with Emily (Joseph started school yesterday, Emily today). We got home about 1:00, and then were absorbed with various visits from PT, OT, and nurse in the afternoon. They are good about getting all sorts of supports in place. The nurse from the cancer society also called and she will come to the house next week, which I thought was going to be before the oncology appointment, but then the ward called us as we were walking in the door and said we had an appointment with oncology tomorrow (today) morning. This was a bit of a shock and I was feeling unprepared, but it turned out all right, as I'll write...
Anyway, last night about 5:30 my dad and stepmother arrived back from Wellington area, and we had our favorite Japanese take-out and welcome-home cake, decorated by Emily. Manford was pretty tired and we all collapsed by 8:30 (ok, Joseph was still awake and alert, and Dad and Diane went back to their hotel).
This morning we got Emily off to school (she got the teacher she wanted) and then the nurse and doctors (three of them--I presume the ones tagging along and watching were residents or students) came--the nurse will come every day (for two weeks or so), but I don't think the doctors will be back as often. Then we raced off to the oncology appointment.
The doctor was compassionate and thoughtful, and not hurried except by the fire alarm that came just as we were finishing the appointment...I can't say he was very optimistic, but he seemed flexible and respectful. He said that chemotherapy has not been shown to be effective for this tumor in people over 60--it may delay the progression somewhat, but is not well tolerated and may or may not be worth it. We will definitely do radiation, which is just three weeks of daily treatments. We may participate in a clinical trial of chemotherapy; we will talk about that on Monday. I have been reading and calling some people about clinical trials in the US, but I'm not sure what we will decide to do.
Manford seems to be taking it all very well, though he is easily tired, as you might expect. He has recovered remarkably well from the surgery. We appreciate the cards people have sent(a pile came yesterday, right on time for the homecoming), and all the thoughts and prayers.
Carrie
Manford is home, and walking around quite steadily. I went and picked him up at midday yesterday, while a friend stayed with Emily (Joseph started school yesterday, Emily today). We got home about 1:00, and then were absorbed with various visits from PT, OT, and nurse in the afternoon. They are good about getting all sorts of supports in place. The nurse from the cancer society also called and she will come to the house next week, which I thought was going to be before the oncology appointment, but then the ward called us as we were walking in the door and said we had an appointment with oncology tomorrow (today) morning. This was a bit of a shock and I was feeling unprepared, but it turned out all right, as I'll write...
Anyway, last night about 5:30 my dad and stepmother arrived back from Wellington area, and we had our favorite Japanese take-out and welcome-home cake, decorated by Emily. Manford was pretty tired and we all collapsed by 8:30 (ok, Joseph was still awake and alert, and Dad and Diane went back to their hotel).
This morning we got Emily off to school (she got the teacher she wanted) and then the nurse and doctors (three of them--I presume the ones tagging along and watching were residents or students) came--the nurse will come every day (for two weeks or so), but I don't think the doctors will be back as often. Then we raced off to the oncology appointment.
The doctor was compassionate and thoughtful, and not hurried except by the fire alarm that came just as we were finishing the appointment...I can't say he was very optimistic, but he seemed flexible and respectful. He said that chemotherapy has not been shown to be effective for this tumor in people over 60--it may delay the progression somewhat, but is not well tolerated and may or may not be worth it. We will definitely do radiation, which is just three weeks of daily treatments. We may participate in a clinical trial of chemotherapy; we will talk about that on Monday. I have been reading and calling some people about clinical trials in the US, but I'm not sure what we will decide to do.
Manford seems to be taking it all very well, though he is easily tired, as you might expect. He has recovered remarkably well from the surgery. We appreciate the cards people have sent(a pile came yesterday, right on time for the homecoming), and all the thoughts and prayers.
Carrie
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