CEA is a marker for my type of cancer and the value should be for a healthy person between 0.0 and 5.0. In practise it shouldn't exist in the blood. In my blood test on June 23rd the CEA value was 6257.1! The values are very individual and can't be compared to other persons with same cancer, but it does show that my case is serious. I called the hospital today to check if the value of the CEA in the blood test on August 26th had arrived. It had. The value had gone down to 3482.0! This is at least going to the right direction.
After the IV on Wednesday I've been pretty tired but still waking up at around four in the morning not easily falling back asleep. This morning I woke up at the same time just to hear our youngest kid who sleeps in the same room shout “harepus”, which is Norwegian for “bunny” (English) or “pupu” (Finnish). He went on shouting “harepupu”, combining a bit of Norwegian and Finnish. He was still asleep and hopefully did not have a nightmare about loosing his beloved green bunny. For a change it felt quite nice to wake up at four.
Friday, August 29, 2008
Wednesday, August 27, 2008
Third round of treatments
Had a long day at hospital today. In the morning we (my wife joined me) were supposed to meet the same doctor we met three weeks ago, but he sent his apologies. He had something else and another doctor stepped in. We have now seen a new doctor every single time we have been at the the hospital. Anyway, the new doctor was very nice and knew my situation. We went through the usual stuff first, how I felt and about the side effects I had had during the second round. I told her about the nausea I seem to get for a couple of days and that Primperan is not helping enough so I mostly just manage to lie on the couch those days. She prescribed me new and supposedly much better anti-nausea medicines. We talked about the sore soles of my feet. They are fine now but she wanted to lower the morning dose of Xeloda.
We discussed the values of the blood test I took yesterday. We were especially excited about finding out the value of the CEA marker, but unfortunately the value was not in the system yet. It seems it takes longer time to analyse than other more usual values. All other values were good. For example, they measure the AFOS liver value every time. It should be within the range of 35 to 105 and my value has been over that since the first blood test in May. The highest value was just before I started treatments when it was 177. After that it has come down and in yesterday's blood test it was 113, almost within the range.
We discussed Avastin. The doctors have not wanted to add Avastin to the treatment as there was some blood in my stool earlier from the rectal tumour, and Avastin should not be given in that case. The drugs I have been given this far have done something to the tumor so that the bleeding has luckily stopped. The doctor said this is a positive sign and decided therefore to add Avastin to the third treatment round. So I'm now on Eloxatin, Xeloda and Avastin. She also scheduled the next CT scan in two weeks. In the CT scan they will see if the liver metastases are the same, growing, or decreasing in size.
The infusion, IV as I've learnt is used in English, took five hours this time as Avastin was added. I tried to finish Lance Armstrong's book. At half past four in the afternoon I got to leave. I left with a pretty positive feeling. At least the drugs I've got so far have had some impact.
We discussed the values of the blood test I took yesterday. We were especially excited about finding out the value of the CEA marker, but unfortunately the value was not in the system yet. It seems it takes longer time to analyse than other more usual values. All other values were good. For example, they measure the AFOS liver value every time. It should be within the range of 35 to 105 and my value has been over that since the first blood test in May. The highest value was just before I started treatments when it was 177. After that it has come down and in yesterday's blood test it was 113, almost within the range.
We discussed Avastin. The doctors have not wanted to add Avastin to the treatment as there was some blood in my stool earlier from the rectal tumour, and Avastin should not be given in that case. The drugs I have been given this far have done something to the tumor so that the bleeding has luckily stopped. The doctor said this is a positive sign and decided therefore to add Avastin to the third treatment round. So I'm now on Eloxatin, Xeloda and Avastin. She also scheduled the next CT scan in two weeks. In the CT scan they will see if the liver metastases are the same, growing, or decreasing in size.
The infusion, IV as I've learnt is used in English, took five hours this time as Avastin was added. I tried to finish Lance Armstrong's book. At half past four in the afternoon I got to leave. I left with a pretty positive feeling. At least the drugs I've got so far have had some impact.
Thursday, August 21, 2008
Meeting with psychologists
The nausea last week lasted for around three days and Monday evening last week I was starting to feel quite fine again. It is the Eloxatin that is the cause of the nausea and it typically hits days 3-7 after the infusion. I'm considering trying out another medicine than Primperan to cope with the nausea next time.
I was supposed to go and see that Norwegian psychologist last week's Monday but as I didn't feel too well I called him and had the appointment moved till Wednesday. On Wednesday I jumped on the train to Helsinki. I learned first of all that he's a psychotherapist and not a psychologist by education, though for me it does not make a difference. We talked about his education and experience, what services he provides and about my situation. It was good to discuss matters in Norwegian and he made a good impression. However, he wanted a set-up where he'd meet me twice a week for a longer period of time. I said I needed some time to think about that as travelling to Helsinki that frequently could be tough especially if I will have side effects from the chemotherapy every now and then. He said we could try and do some of the conversations on phone. We also discussed the possibility of getting financial support from the Social Insurance Institution of Finland (KELA).
On the train back and forth to Helsinki I read half-way through Lance Armstrong's book “It's not about the bike”. He was a professional cyclist that got testicular cancer that spread (metastasised) to brain and lungs. Against all odds he recovered from the cancer and returned to cycling to win Tour de France seven years in a row. We have found many other against-all-odds stories on the Internet which has helped us keep up a positive spirit.
Yesterday, one week after meeting up with the Norwegian psychotherapist in Helsinki, my wife and myself had an appointment with a hospital psychologist at the Tampere University Hospital (TAYS). This is a free-of-charge service that's included in the treatments I'm getting and we met her for the second time. Among a lot of issues, we talked about how to include children into this process. We have so far told the older kid that I'm sick and need to go to the hospital every now and then. She recommended to be open with the kids and not to create an atmosphere that there's something secret going on among the adults. She also gave us some hints how to tackle tricky questions from kids like if dad is going to die. We could just answer that I'm feeling fine now but I may not become as old as grand-father. She also recommended us to attend a one day family therapy session in Helsinki later this autumn.
Upon my request the hospital psychologist had checked if I would get any financial support for seeing the Norwegian psychotherapist in Helsinki. It seems challenging unless I would get a doctor's referral from the cancer treatment department at the hospital. As I already have this one psychologist at my disposal free of charge it will probably not work out. Anyhow, travelling twice a week to Helsinki would have been too much anyway.
By the way, a new side effect appeared last week. The sole of my feet got sore and I started getting blisters. This is a documented side effect from the Xeloda drug. It is much better now and it seems to disappear.
I was supposed to go and see that Norwegian psychologist last week's Monday but as I didn't feel too well I called him and had the appointment moved till Wednesday. On Wednesday I jumped on the train to Helsinki. I learned first of all that he's a psychotherapist and not a psychologist by education, though for me it does not make a difference. We talked about his education and experience, what services he provides and about my situation. It was good to discuss matters in Norwegian and he made a good impression. However, he wanted a set-up where he'd meet me twice a week for a longer period of time. I said I needed some time to think about that as travelling to Helsinki that frequently could be tough especially if I will have side effects from the chemotherapy every now and then. He said we could try and do some of the conversations on phone. We also discussed the possibility of getting financial support from the Social Insurance Institution of Finland (KELA).
On the train back and forth to Helsinki I read half-way through Lance Armstrong's book “It's not about the bike”. He was a professional cyclist that got testicular cancer that spread (metastasised) to brain and lungs. Against all odds he recovered from the cancer and returned to cycling to win Tour de France seven years in a row. We have found many other against-all-odds stories on the Internet which has helped us keep up a positive spirit.
Yesterday, one week after meeting up with the Norwegian psychotherapist in Helsinki, my wife and myself had an appointment with a hospital psychologist at the Tampere University Hospital (TAYS). This is a free-of-charge service that's included in the treatments I'm getting and we met her for the second time. Among a lot of issues, we talked about how to include children into this process. We have so far told the older kid that I'm sick and need to go to the hospital every now and then. She recommended to be open with the kids and not to create an atmosphere that there's something secret going on among the adults. She also gave us some hints how to tackle tricky questions from kids like if dad is going to die. We could just answer that I'm feeling fine now but I may not become as old as grand-father. She also recommended us to attend a one day family therapy session in Helsinki later this autumn.
Upon my request the hospital psychologist had checked if I would get any financial support for seeing the Norwegian psychotherapist in Helsinki. It seems challenging unless I would get a doctor's referral from the cancer treatment department at the hospital. As I already have this one psychologist at my disposal free of charge it will probably not work out. Anyhow, travelling twice a week to Helsinki would have been too much anyway.
By the way, a new side effect appeared last week. The sole of my feet got sore and I started getting blisters. This is a documented side effect from the Xeloda drug. It is much better now and it seems to disappear.
Sunday, August 10, 2008
Second round of treatments
I started the second treatment round on Wednesday. The Eloxatin infusion took only three hours and I was sent home right afterwards. In addition I started the two week period of Xeloda pills. I didn't feel any side effects until Friday evening when some nausea hit. I've had it throughout the weekend and tried to manage it with the Primperan medicine. I've been feeling kind of OK in between but I think I've still spent most of the time on the couch. Hopefully it will pass soon.
Tomorrow I'm off to see a Norwegian psychologist at the Helsinki University Hospital. I've met this guy in a Norwegian children's club but didn't know he was a psychologist until my wife found his web site from the Internet.
Tomorrow I'm off to see a Norwegian psychologist at the Helsinki University Hospital. I've met this guy in a Norwegian children's club but didn't know he was a psychologist until my wife found his web site from the Internet.
Meeting with doctor at Tampere University Hospital
On Tuesday we met up with a doctor at the hospital. The doctor was really good to talk to and he patiently replied to our questions. Guess I have to admit that my wife was the one who was mainly asking and she had a long list of questions prepared beforehand.
We asked if surgery of the rectal tumour would be a logical step but he said that for that I would have to take a break from the chemo at least a month before surgery and a month after surgery, so at the moment it is more important to try to shrink the tumours. They are still considering adding Avastin to the medication maybe next round or the round after that.
We have been wondering why my treatment is called "standard" as most rectal cancer patients are over 60 years old, would I (younger, in good health otherwise) not be able to tolerate something even "stronger"? The doctor replied it is standard because it is the most efficient treatment available at the moment. There is another antibody treatment in addition to Avastin in test phase at the moment but not used for treating patients in Tampere University Hospital (TAYS) yet. Avastin is a bevacizumab drug, the new one is called panitumumab.
The doctor mentioned that calling a cancer incurable means that even though chemo would make all tumours disappear, they are very likely to reoccur. Despite that, even the option of making all tumours disappear for a while sounded really good.
The blood tests that were taken on Monday did not measure cancer markers so we don't know yet how the chemo is working, they were just checking I was in ok condition to start the second round of treatment, but most of the other values (liver values, blood values) that they did check had anyhow improved slightly which sounded good. They will check the cancer markers and take another CT scan probably after three rounds of treatment.
The doctor stressed again it is important not to lose weight, because he said the cancer tumours will always get their nourishment from nearby tissues but if I will lose weight the rest of the body will have less energy in use.
We asked if surgery of the rectal tumour would be a logical step but he said that for that I would have to take a break from the chemo at least a month before surgery and a month after surgery, so at the moment it is more important to try to shrink the tumours. They are still considering adding Avastin to the medication maybe next round or the round after that.
We have been wondering why my treatment is called "standard" as most rectal cancer patients are over 60 years old, would I (younger, in good health otherwise) not be able to tolerate something even "stronger"? The doctor replied it is standard because it is the most efficient treatment available at the moment. There is another antibody treatment in addition to Avastin in test phase at the moment but not used for treating patients in Tampere University Hospital (TAYS) yet. Avastin is a bevacizumab drug, the new one is called panitumumab.
The doctor mentioned that calling a cancer incurable means that even though chemo would make all tumours disappear, they are very likely to reoccur. Despite that, even the option of making all tumours disappear for a while sounded really good.
The blood tests that were taken on Monday did not measure cancer markers so we don't know yet how the chemo is working, they were just checking I was in ok condition to start the second round of treatment, but most of the other values (liver values, blood values) that they did check had anyhow improved slightly which sounded good. They will check the cancer markers and take another CT scan probably after three rounds of treatment.
The doctor stressed again it is important not to lose weight, because he said the cancer tumours will always get their nourishment from nearby tissues but if I will lose weight the rest of the body will have less energy in use.
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