Happy New Year!

We celebrated Christmas with Marjo's family and one of my sisters and her husband who visited for some days. We had a traditional Finnish Christmas dinner including a huge ham on Christmas Eve. We usually have a Norwegian dinner during Christmas as well and this year my sister and brother-in-law cooked Norwegian-style ribs ("ribbe") for us on Christmas Day. It was all very nice but I was a little unfortunate and suffered from lack of appetite. It has been a problem for a while and seems to go on. I'm down to 75 kg now and need to focus more on eating.

The Santa Claus (Joulupukki in Finnish) visited on Christmas Eve as well. The kids asked many questions ("Is one of your reindeers called Rudolf?"), sang to him, and got a lot of presents, mostly Lego which they both love. I got a lot of presents myself from friends and family (thank you!). The most special one was a blanket knitted by some friends. The colors were red, white, and blue which suite Norwegians very well! I should be able to cope with chills and cold temperatures very well now.

I've recovered from the side effects of the first virus treatment quite well but I'm not in as good shape as I would wish for. Some days are pretty good and I'm able to go for short walks in the woods. Other days I feel just uncomfortable, tired, not able to sleep well at nights, need rest frequently during the days, and like I said no appetite. I've got a fixed doctor at the local hospital in the palliative ward now and she follows me up often and very well. On her recommendation I'm taking pain-killers regularly so I am at least in no pain. My back has been ok recently anyway but I have had some stomach pains. The next virus treatment is next week in the private hospital in Helsinki. The follow up on if the treatment is working is supposed to be after the third treatment, I am not sure if they even take the cancer marker test before that. Before that we won't know if the treatment is working on me. Let's hope the second treatment will be a bit easier than the first one.

Wishing you all a Happy New Year!

Collection for family

Hey, this is not Jan Arne nor the wife writing, but a friend.

A lot of friends are looking for ways to support the family and, since not everyone is able to help in concrete things, many have expressed a desire to offer monetary help. This could also help ensure that Jan Arne get the virus treatments he's started at Docrates, the private hospital specialising in cancer treatments.

A group of us got together to put things in place to make a channel for doing that. We now have permits and an account in place to have a joint friends' collection.

The proceeds of this collection will be given to the family to use for treatments and other expenses at their discretion.

If you want to contribute, send a mail to:
ja_team(at)yahoo.com

and we can send you more details.

In the meantime, one day to Winter Solstice!
Celebrate!

A day at the hospital

I called the hospital in the morning and after some time got a call back and they had managed to fit Jan Arne to see a doc in the afternoon.

Blood tests were all ok, and the doc did not consider the ascites bad even though there was some fluid in the stomach, or whatever the whole cavity area would be called in English. So no need to drain the fluid, she said most of the uncomfort is caused by the constipation (caused by the nausea pills). The plan is for Jan Arne now to take some medicine to ease the constipation, and quit the nausea medication. The stomach wasn't actually that bad during the day today as it was yesterday evening, but good to check everything of course, like that there's no blockage in the bowel. All the personnel in the palliative ward is really nice, we even got offered some juice and Xmas cake. And to top this one of the doctors there is an old dear friend of mine from school I haven't met in years!

They also took some x-rays to check if there's anything worrying anywhere but luckily there was no fluid in the lungs and also none of the metastases in the bones and vertebrae had caused anything "destructive", meaning risk of the bone or vertebrae breaking because of the metastases "eating up" the bone. The doc translated us the results of the Docrates PET-CT and actually the vertebrae mets are quite high up (one somewhere close to the neck, the other in chest area), not in the lower back as we thought. If they start causing pain or risk breaking the bone they will radiate the mets. I'd still feel a lot better if there weren't any mets in the bones and especially in vertebrae :(

Jan Arne also got some new sleeping pills so hopefully he'll be able to sleep better tonight.

Not this as well

There were some better-er days there, Jan Arne even went for a walk the other day. He's also been playing a lot with the kids (no visitors here please as it is impossible to walk because of all the Lego all over the place) and has had some energy to watch TV and other such every day things.

But on the negative side he's had some fever and chills, still no appetite to speak of but at least no nausea as he upped the dose of nausea pills. The most annoying and uncomfortable and worrying thing is that his stomach has been slowly getting bloated. It is probably (and this diagnosis from me, and I am not a doc) the typical symptom of cancer I guess, google "ascites" if you wish. He was supposed to have a doctor's appointment at our local hospital on Monday but this evening the stomach started to be so bloated I think he will have to go there first thing in the morning. I hope they can identify the cause and do something about it. He is feeling quite uncomfortable and it is also difficult for him to sleep.

Again hoping for better days.

Saturday

I wish I could say it is going better, and it is, but I wish it was going... better-er. Today Jan Arne was up most of the day, watching sports on TV (how else) but did not go out because a) lack of energy b) it's pretty cold outside. So the day was a bit better, no fever and chills either, but he still has not appetite, and in the evening he started feeling quite sick again.

I went downtown with the kids today as the younger one had a Christmas party for his music playschool. On the way there he was quite adamant he was NOT going to wear the nice shirt and he was NOT going to go on stage, but when we got there he actually did and didn't even pick his nose too much while singing Xmas songs in front of some 200 people. After the show we went for hamburgers and fries (something we don't eat too often) and stopped by in a pharmacy to get some energy & protein drinks for Jan Arne. They had some that was even described as being meant for cancer patients. Nothing with hamburger and fries flavour though.

I am so worried Jan Arne is not getting enough of energy and proteins. He has not been eating much for the past couple of weeks so of course he is feeling quite weak because of that as well. Good luck the back pain has not been too bad the last couple of days. He said he did have an ok appetite the night before the virus treatment when he was staying over night at a friend's place, hey Juha can you tell me what you cooked for him? :)

On Monday he has to leave the house to get a blood test and to maybe try to discuss with a doctor at the hospital about palliative care and what to do with the metastasis in the hip bone.

Again, hoping for a better (and even better-er) tomorrow...

Day after

The day after the treatment Jan Arne has been mainly feeling like crap.

I went to the hospital in the morning and he had been awake most of the night, some fever, some nausea, just uncomfortable (well, hospital bed too of course). He considered for a while that there's no way he can travel all the way back to Tampere, and maybe he should stay at the patient hotel which is situated in the same building. But he started to feel a bit better after taking a shower so we left for Tampere by train.

Before we left the nurse brought in the blood test results from the morning and she was satisfied with them, changes compared to Tuesday morning as was to be expected: platelets down, crp (infection marker) up etc. He will have to go to a blood test in Tampere on Monday to check how the values are, Docrates then wants the values to be sent to them by fax.

The taxi drive to the train station in Helsinki was quite an ordeal as there was some heavy snow fall on Tuesday evening and the city was in a bit of a chaos still and roads were really bumpy. Not nice to a guy who is nauseous and generally feeling uncomfortable. :(

The rest of the day he has been sleeping or trying to sleep, no fever really but no appetite either. Let's hope tomorrow will be a better day.

First virus treatment

Jan Arne received his first virus treatment today. I took a train from Tampere and am just visiting him at Docrates (or actually this part of the hospital is a ward of a private hospital called Eira). Jan Arne has a private room with a 40 inch Sony Bravia so he'd be happy except no Canal+ = no ManU football match for him today.

First thing in the morning they had taken blood tests and the values keep on amazingly good levels. Then they injected some radioactive stuff in him to take a PET scan, after which they injected the genetically engineered adenoviruses into five spots of the lymph node and liver metastases. He is currently a biohazard and radioactive so I sit on the other end of the room (just kidding). They had seen in the PET scan a bone met in his hip which they had missed in the scans in Tampere, we will have to ask them if it should be radiated.

At night he may start feeling the effect of millions of viruses in his body and may run a high fever so I will escape to my cousin's residence and leave him to more capable hands (nurses). He should be ok enough to get home tomorrow morning when we'll take a train back to Tampere.

So things are looking ok at the moment, please spare some thumbs and prayers and positive thoughts that this treatment will have some effect! Thanks for all the support until now, we have so many friends it seems...

Helsinki

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.

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.

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.