Today Marjo and I travelled to Helsinki to meet up with a doctor at Docrates, a private clinic specialising in cancer treatments. We took the train as neither one of us was very eager to drive and the temperature this morning was -20 degrees (Celsius). It was nice and relaxing and a good choice.
In Docrates we met Akseli Hemminki who's in charge of the experimental virus treatments at the clinic and also a professor at the Helsinki University. He had gone through my papers beforehand and seemed well up to speed on the situation with my cancer. He said it's logical to believe that the cancer is causing the back/hip pains I'm struggling with. I'm now taking stronger pain killers but it seems I either need to take more or get even stronger medicine as it's still difficult to fall asleep at nights.
He made a lot of detailed questions to understand what shape I am in physically. The cancer has an impact now and I am clearly in a worse shape than during summer. For example, I get quite tired even after a short 2 km walk around the woods here. He also wanted to know how much I need to sleep during the day time. That varies a little depending on how well I sleep during the night but typically I take a one-hour-long nap in the afternoon.
Then he introduced the virus treatments and emphasized they are experimental at the moment. At some point they will run clinical trials but they have not yet got to that point. As of August 206 patients have received the virus treatment and 50%-63% have had a positive response ("antitumor" as they put it) in one way or another. Not cured, but the cancer has stopped advancing for a while. We also discussed the risks and side-effects of which the most common are flu-like symptoms and fever that can last for days, as well as swelling in the tumours which may actually increase my back pain. He also pointed out that they may not have discovered all side-effects as they are in an experimental mode. They use various viruses but would choose one that they believe is most suited for my type of cancer. He also recommended to take a set of three treatments as this has shown best results.
There were three criteria I need to fulfil in order to be eligible for virus treatment. First of all, I have had to go through all standard chemo treatments (Eloxatin/Avastin, Camptosar/Erbitux and Xeloda in one or both of these combinations). I'm fine on this criteria. Then blood values and physical shape need to be quite good. They pay special attention to the liver values and he was a little concerned that my ALAT value had gone up to 72 which is slightly above the normal range. He said they would do a final check of the blood values on the treatment day.
He concluded the assessment saying I'm at the moment good for virus treatment but that we shouldn't spend too long time making a decision as the cancer seems to be progressing fast. I said let's go for it and Marjo agreed. He booked me in for Tuesday next week, then we went through the procedure and I signed the papers.
Tuesday, November 30, 2010
Thursday, November 25, 2010
Doctor in chief
First of all thanks a lot for all the calls, blog comments, messages and mails after my previous blog post. I have not got around to answer to you all yet. Sorry about that!
Since summer I've had some pain in my left hip. It has been a bit on and off and I've managed fine up until a month or so ago when it started getting worse. In particular lying down has been painful and I had to start to take pain killers at night to be able to sleep. I told the doctors at the hospital and they immediately took an x-ray image of the area. There was nothing abnormal and they concluded there was no connection to the cancer. I visited the doctors at work and they suspected an infection. I got some cortisone injections, sports gel and painkillers, but nothing helped.
Two-three weeks ago the pain moved to my lower back and intensified. I brought it up with the doctor in the CT scan review. The scan did not show anything that could explain it either but the doctor set me up for a special gamma scan of the skeleton Monday this week just to double-check. I also started going to physiotherapy. The senior doctor said today the skeleton was clean. However, he suspected the pain could be a result of a tumour pressing on a nerve somewhere as there is quite a lot of cancer in the lymph nodes outside of lungs and liver and along the colon. I got a whole bunch of prescriptions for stronger pain killers.
And then about the discussion with the senior doctor today. In fact it was quite long mainly because of Marjo's many questions. Most of the discussions went over my head. Anyway, going back on the first drug (Oxaliplatin) I was on is not a good alternative. The doctor was pretty certain that it most probably would not have any impact on the cancer but only give me the side effects. We asked about the other older chemo they said could be tried but his opinion of that was the same, most probably no effect but it could be tried, actually together with gemcitabine I have been receiving this autumn. Then Marjo asked about clinical trials but there's nothing on or open I could enter.
We also discussed the Helsinki private hospital virus treatments. His opinion was that the positive news about the effect of the treatments has been exaggerated, that their scientific data is not actually bulletproof, and he does not know anyone of his patients that would have had any use of the treatment: a progressing cancer has continued to progress. He commented though that Docrates is not the only hospital in Finland giving the treatments. The hospital in Kuopio has given virus treatments successfully for patients with brain tumours using a certain virus (with virus treatments it is relevant which virus they are using).
To make sure all loose ends are tied Marjo even asked about fever/heat therapy, RFA, and radiation. He replied that the there's way too many tumours for any therapies really but if there's a tumour in a bad spot they can try to kill it with radiation of course, that's part of palliative treatment.
So to sum it up, his opinion was that whether I get some treatment or only palliative care (mainly pain management) the end result and the time I have left are going to be the same. Still, interestingly when Marjo said something about there not being any hope, he replied "There's always hope". We don't know what he meant with that as my case is clearly "hopeless" by now, but maybe it is still a good thought.
Since summer I've had some pain in my left hip. It has been a bit on and off and I've managed fine up until a month or so ago when it started getting worse. In particular lying down has been painful and I had to start to take pain killers at night to be able to sleep. I told the doctors at the hospital and they immediately took an x-ray image of the area. There was nothing abnormal and they concluded there was no connection to the cancer. I visited the doctors at work and they suspected an infection. I got some cortisone injections, sports gel and painkillers, but nothing helped.
Two-three weeks ago the pain moved to my lower back and intensified. I brought it up with the doctor in the CT scan review. The scan did not show anything that could explain it either but the doctor set me up for a special gamma scan of the skeleton Monday this week just to double-check. I also started going to physiotherapy. The senior doctor said today the skeleton was clean. However, he suspected the pain could be a result of a tumour pressing on a nerve somewhere as there is quite a lot of cancer in the lymph nodes outside of lungs and liver and along the colon. I got a whole bunch of prescriptions for stronger pain killers.
And then about the discussion with the senior doctor today. In fact it was quite long mainly because of Marjo's many questions. Most of the discussions went over my head. Anyway, going back on the first drug (Oxaliplatin) I was on is not a good alternative. The doctor was pretty certain that it most probably would not have any impact on the cancer but only give me the side effects. We asked about the other older chemo they said could be tried but his opinion of that was the same, most probably no effect but it could be tried, actually together with gemcitabine I have been receiving this autumn. Then Marjo asked about clinical trials but there's nothing on or open I could enter.
We also discussed the Helsinki private hospital virus treatments. His opinion was that the positive news about the effect of the treatments has been exaggerated, that their scientific data is not actually bulletproof, and he does not know anyone of his patients that would have had any use of the treatment: a progressing cancer has continued to progress. He commented though that Docrates is not the only hospital in Finland giving the treatments. The hospital in Kuopio has given virus treatments successfully for patients with brain tumours using a certain virus (with virus treatments it is relevant which virus they are using).
To make sure all loose ends are tied Marjo even asked about fever/heat therapy, RFA, and radiation. He replied that the there's way too many tumours for any therapies really but if there's a tumour in a bad spot they can try to kill it with radiation of course, that's part of palliative treatment.
So to sum it up, his opinion was that whether I get some treatment or only palliative care (mainly pain management) the end result and the time I have left are going to be the same. Still, interestingly when Marjo said something about there not being any hope, he replied "There's always hope". We don't know what he meant with that as my case is clearly "hopeless" by now, but maybe it is still a good thought.
Friday, November 12, 2010
The end of the road?
The feedback from the CT scan came faster than I thought. Actually, a nurse called me up on Wednesday afternoon a few hours after the scan and said the doctor wanted to see me first thing in the morning (Thursday). I knew it could not be good news and it wasn't. Cancer has clearly spread further in lower parts of lungs. There are now tens of tumours and the biggest was 11 mm in diameter. The old tumours in the liver seem to have died and don't change in size but there was one new tumour that was quite big already (2,9 cm x 2,5 cm). More lymph nodes around the liver had grown in size also.
The doctor said she had discussed my situation with the senior doctor who's pulling the threads behind the scene. The progress of the cancer means the current chemo I'm on does not work and will be discontinued. Unfortunately, there are no good treatment alternatives left and the doctor said moving on to palliative care could be the next step now. That means I would get treatment to relieve suffering and pain. In other words, it's the last stop on the road. I still have the meeting with the senior doctor on 25.11 so we'll discuss through the alternatives there. There is one very old drug left that could be tried and there is the issue of going back to the first chemo I was on. The doctors don't believe any of these two options will have any impact on the cancer but it will only give me all the side effects.
There are also many pros and cons to be considered. For example, is it worth trying something that probably won't work and make me sick while I could feel better and spend time with kids? It could also seem like my body is tired and does not take chemo as well as two years ago. That could be the reason why I've been reacting to Gemzar this autumn.
When I came home yesterday I called up Docrates, a private hospital in Helsinki offering cancer treatments. They are doing experiments using virus treatments to cure cancer. None of the doctors at the hospital where I am now recommend it as it's still very experimental and you have to pay for it yourself. However, we'd like to hear what they possibly could offer. I promised to copy my papers and send them over and a doctor would call me up sometime next week.
Many people ask how I'm doing. Well, pretty fine actually. Living with incurable cancer for 2,5 years has made me somewhat prepared for this situation also.
The doctor said she had discussed my situation with the senior doctor who's pulling the threads behind the scene. The progress of the cancer means the current chemo I'm on does not work and will be discontinued. Unfortunately, there are no good treatment alternatives left and the doctor said moving on to palliative care could be the next step now. That means I would get treatment to relieve suffering and pain. In other words, it's the last stop on the road. I still have the meeting with the senior doctor on 25.11 so we'll discuss through the alternatives there. There is one very old drug left that could be tried and there is the issue of going back to the first chemo I was on. The doctors don't believe any of these two options will have any impact on the cancer but it will only give me all the side effects.
There are also many pros and cons to be considered. For example, is it worth trying something that probably won't work and make me sick while I could feel better and spend time with kids? It could also seem like my body is tired and does not take chemo as well as two years ago. That could be the reason why I've been reacting to Gemzar this autumn.
When I came home yesterday I called up Docrates, a private hospital in Helsinki offering cancer treatments. They are doing experiments using virus treatments to cure cancer. None of the doctors at the hospital where I am now recommend it as it's still very experimental and you have to pay for it yourself. However, we'd like to hear what they possibly could offer. I promised to copy my papers and send them over and a doctor would call me up sometime next week.
Many people ask how I'm doing. Well, pretty fine actually. Living with incurable cancer for 2,5 years has made me somewhat prepared for this situation also.
Tuesday, November 9, 2010
Food!
Previous week was of a challenging sort. I had nausea, no appetite and struggled to eat the whole week. The anti-nausea pills I would normally take didn't improve my condition very much either. My weight dropped to 78 kg and we started getting a little worried if the cancer had a role in this. Marjo forced me to see a doctor. I called my nurse on Thursday, cancelled the chemo treatment and got a doctor's appointment the following day at 1300.
The doctor couldn't find anything unusual but prescribed me cortisone pills to increase appetite. We have to wait for the CT pictures to find out how the cancer is really doing. I'll have the scan tomorrow but get to hear the results in two weeks when I'm scheduled with the senior doctor.
Well, the cortisone pills seem to work and the appetite improved during the weekend. Yesterday I was happy to have half a pizza for lunch at a Kotipizza restaurant. I took the rest with me home and had it in the evening.
Monday, November 1, 2010
Winter-time
Time flies! Clocks have already been turned back! I've been a little lazy updating the blog lately. I haven't been busy in any particular way either so guess this comes down to pure lazyness. Well, I tend to end up tired in the couch in the evenings with little motivation to do much else than watch TV.
The chemo I'm on (Gemzar in particular) gives me some trouble and the treatment schedule is so that nausea, tiredness and stomack issues hit during weekends. During weekdays I normally feel pretty fine. I'm taking various drugs as counter-measures to the unwanted side-effects and the situation isn't too bad. My appetite isn't what it used to be though, and I have to pay more attention to eating. I've gone under 80 kg whereas I was over 90 kg one year ago. I will try and have the chemo schedule changed after next CT scan (November 10th) so that I can enjoy weekends better.
I had a little break in the treatment in October as the platelets level was very low. We used the opportunity to visit friends outside of Turku and then we had visitors from Norway one long weekend. Both very nice.
The chemo I'm on (Gemzar in particular) gives me some trouble and the treatment schedule is so that nausea, tiredness and stomack issues hit during weekends. During weekdays I normally feel pretty fine. I'm taking various drugs as counter-measures to the unwanted side-effects and the situation isn't too bad. My appetite isn't what it used to be though, and I have to pay more attention to eating. I've gone under 80 kg whereas I was over 90 kg one year ago. I will try and have the chemo schedule changed after next CT scan (November 10th) so that I can enjoy weekends better.
I had a little break in the treatment in October as the platelets level was very low. We used the opportunity to visit friends outside of Turku and then we had visitors from Norway one long weekend. Both very nice.
Thursday, September 30, 2010
Birthday
We had a very small birthday party in the afternoon with in-laws and some relatives. The cake was great and there was a very heavy present waiting. I'm now the lucky owner of PlayStation Move! Now we just need to figure out what games to buy. I bet a football game will be high on the list.
On the outdoors front, we've lately done some geocaching with the kids. It's a fun way to get out into the woods. Well, fun as long as we find the cache. Once we even took the father-in-law with us. I've also managed to squeeze in a couple of rounds of golf. The end of the golf season is getting close as temperatures are dropping so I may have hit my last golf ball this year already.
I'm doing better battling Gemzar. I tried a better anti-nausea drug called Emend and last weekend was pretty good. I got Gemzar again today so hope Emend will do the trick again.
Here's one of my favourite Monthy Pyton sketches. Enjoy!
Wednesday, September 15, 2010
Gemzar
Monday, September 6, 2010
Just a brief update
Jan Arne was in the hospital until Friday last week. They gave him IV antibiotics in case the throat infection was caused by bacteria, but they didn't manage to figure out with tests what bacteria it was. One doctor said it is a clear case of mononucleosis, but in the end it was not according to tests. His blood values were on the low side, platelets down to 50 (limit for normal 150 and limit for getting chemo 100), and also leucosytes and hemoglobin were quite a bit below normal limits.
They let him come home anyway for the weekend and he was very tired but well enough to even do some geocaching with the kids. We also went to pick up some apples from friends' garden on Sunday.
This morning Jan Arne went for a blood tests, still feeling very tired after a badly slept night. Interestingly enough, his blood values were back to the level they were before they gave him Gemzar a week and a half ago, other values normal, even platelets up to 127 which is good for him. He will have another blood test and a doctor's appointment on Thursday. The doctor will then decide if he will get some chemo and/or Vectibix on Thursday.
They let him come home anyway for the weekend and he was very tired but well enough to even do some geocaching with the kids. We also went to pick up some apples from friends' garden on Sunday.
This morning Jan Arne went for a blood tests, still feeling very tired after a badly slept night. Interestingly enough, his blood values were back to the level they were before they gave him Gemzar a week and a half ago, other values normal, even platelets up to 127 which is good for him. He will have another blood test and a doctor's appointment on Thursday. The doctor will then decide if he will get some chemo and/or Vectibix on Thursday.
Tuesday, August 31, 2010
And it's.... a hospital trip for a change
It hasn't gone quite the way we thought it would go this week.
Jan Arne got the dose of Gemzar and Vectibix last Thursday. We thought the side effects of Gemzar weren't supposed to be bad but on Saturday he started to feel very sleepy and weak. He didn't have fever so I figured it was just fatigue which is a common side effect from Gemzar. The problem was that the fatigue was Just So Bad, and he had no appetite either. He slept most of Saturday. And Sunday. And yesterday. Except in the evening he took the older kid to football practise, and today to play a game (they won 2-0, yippee :) I felt bad that Jan Arne had to go but I had something else both evenings and he said he is tired but ok, except today he had a sore throat in the morning.
The problem with having a cancer patient and two young kids in the family is that the kids keep you busy until they go to bed (even with my parents helping), and only then you can really pay attention to the cancer patient. Good luck he paid attention to himself and took his temperature. It was 38.7 C so I took a look at his throat and it looked like it could be infected (no I have not started my medical studies yet but maybe I should). I phoned the cancer ward and they said he should get to the hospital. Unfortunately the doctor had just gone home 15 minutes earlier, otherwise he could have taken a look at Jan Arne. Instead he had to go to the first aid once again and it's not the nicest place as the service can sometimes be quite slow. He went there two hours ago and had just now had his blood test taken, and it's 23:30 (11.30 pm).
Sigh. Well at least he got some kind of a bed to lie in in there but hopefully they will take him to the cancer ward soon so he can get some proper rest (in a hospital bed?? Yea right). But better to be safe than sorry if it is a throat infection as we don't know how his blood values are after Gemzar and if he manages to battle the infection. But now we don't know if he's been tired because of the chemo or because of a flu.
To be continued.
Jan Arne got the dose of Gemzar and Vectibix last Thursday. We thought the side effects of Gemzar weren't supposed to be bad but on Saturday he started to feel very sleepy and weak. He didn't have fever so I figured it was just fatigue which is a common side effect from Gemzar. The problem was that the fatigue was Just So Bad, and he had no appetite either. He slept most of Saturday. And Sunday. And yesterday. Except in the evening he took the older kid to football practise, and today to play a game (they won 2-0, yippee :) I felt bad that Jan Arne had to go but I had something else both evenings and he said he is tired but ok, except today he had a sore throat in the morning.
The problem with having a cancer patient and two young kids in the family is that the kids keep you busy until they go to bed (even with my parents helping), and only then you can really pay attention to the cancer patient. Good luck he paid attention to himself and took his temperature. It was 38.7 C so I took a look at his throat and it looked like it could be infected (no I have not started my medical studies yet but maybe I should). I phoned the cancer ward and they said he should get to the hospital. Unfortunately the doctor had just gone home 15 minutes earlier, otherwise he could have taken a look at Jan Arne. Instead he had to go to the first aid once again and it's not the nicest place as the service can sometimes be quite slow. He went there two hours ago and had just now had his blood test taken, and it's 23:30 (11.30 pm).
Sigh. Well at least he got some kind of a bed to lie in in there but hopefully they will take him to the cancer ward soon so he can get some proper rest (in a hospital bed?? Yea right). But better to be safe than sorry if it is a throat infection as we don't know how his blood values are after Gemzar and if he manages to battle the infection. But now we don't know if he's been tired because of the chemo or because of a flu.
To be continued.
Thursday, August 26, 2010
In the woods
I've recently been going to the woods with a map and a compass. There are these weekly orienteering events open for everyone that I've joined a couple of times (iltarastit in Finnish). I've had a two years break from orienteering and it feels fantastic to fly through the woods again. Well, flying was a bit of an overstatement. I walk part of the time as I'm not that fit anymore. I hope to go for the third time next week.
I also played a round of golf with a friend the other day. I haven't played much the recent years so my swing is pretty rusty. But actually it doesn't really matter anymore. It was great fun anyway!
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