Women

Finland hosted Uefa Women's Euro football tournament during the first weeks of September. Several matches were played in Tampere and I ended up seeing Germany-Norway, Netherlands-France (quarter-finals) and England-Netherlands (semi-finals). In the latter two matches we were surrounded by Dutch fans, mainly family members of the players I suspect. They were pretty good supporters and put up a good show on the stands. Some had made an effort dressing up.
On the cancer front, nothing much has really happened during September. My blood values have been good and platelets have stayed above the limit of 100. I've therefore received the weekly planned dozes of drugs. I'm in for my next CT scan on Friday this week.

Norway

CEA was down to 40,6 last week, which was a very positive surprise as I've had to skip some of the medicine (Camptosar in particular) several times. The platelets count keep jumping up and down around 100 and is the main challenge. I'm taking blood tests the day before I'm going to the hospital for a refill. Yesterday a nurse from the cancer ward called me up and said the platelets count was 92 and I would possibly only get Erbitux and not the other cytostats. She asked me to take another blood test this morning when I arrived at the hospital. Surprise, the count had climbed to 101 so I got the full package after all.


As Marjo said in the previous post, we visited Norway during the last week of our holidays. This time we were a bit mean and told hardly anyone that we would come as we wanted to reduce the stress level as much as possible. Apologies to all those we didn't contact during our stay. This picture above is by the way from our previous visit autumn 2008.

We spent some days on my parents' farm and the kids drove a lot of tractor. My father had now two tractors which worked out pretty well. Our youngest kid liked the older tractor better while our oldest kid enjoyed the latest technology of a quite new tractor. Luckily we had a lot of drivers available as two of my sisters were also visiting.


We visited Bergen and stayed with my sister and her husband. We love the local fish cakes at Madam Bergen. Definitely worth trying for non-Norwegians and they also have delicious fish soups. The picture above is from the aquarium which is a popular place to bring kids.

Thanking the Beat It initiative!

The wife here again.

I have been thinking for a long time now that I don't think we have ever really reported to everyone who took part in the Beat It initiative what happened? If you have been reading the blog you probably noticed we went to Crete in April, that's what happened! It was a very good holiday and the kids still want to watch videos from Crete and they remember the pool and the restaurants we went to, and every once in a while they start asking when we will be going there again... So thank you everyone!! It was a very welcome week of "something different" that we probably would not have done otherwise, and it was a good time to go as now it is more difficult to travel as Jan Arne is in treatment once a week.

On other fronts, we just came back from a week in Norway. Jan Arne had his treatment cancelled from last week so that we could travel, and we got lucky as Finnair just had an offer to Bergen. Now we are back to work and kids are in daycare. Jan Arne is on antibiotics as his nail bed infection got really bad so he went to see a doctor practically straight from the airport when we arrived. Tomorrow is supposed to be a new day for chemo but we have to see first how his platelet count is. It was still low on Friday, I guess due to two successive Camptosar treatments (the second time only since May when they have been able to give it two weeks in a row).

CT scan and CEA test results

That cancer patient I also call my husband is a bit lazy again, asked me to report the good news! So here's a brief recap of last Thursday.

Week 29 Jan Arne had the CT scan and last Wednesday the CEA (cancer marker) test. On Thursday we were to see the doc about the results. We were two minutes late as usual. The doc was at the nurse's office (probably asking where we were) and when we passed the office the nurse yelled to us to the corridor right away "good news!" and smiled.

It was a new doc again, and older cancer specialist this time, always nice to hear new insights into things. The CT report was not very good this time, I mean it was not well written, but the main thing was that the news were good. According to the report there were no longer any metastases to be seen on the left lobe (one 1 cm one in May). The report also said that the changes in the right lobe were not significant, and there were measurements only for Mr Big (the biggest tumour). It has shrunk by a couple of millimeters.

But together with the CEA value which was now 65 (in Feb 108, in May 178) even the "insignificant decrease" was good news, the new chemo regime is working. This doc wants to take the CEA every three weeks now. He said that it is in a way more accurate than the CT scan. I didn't ask but I guess because the tumours don't necessarily shrink as fast as they are dying so you can't really see in CT which parts of the tumours are necrotic = dead cells and which are active cancer tissue.

We were planning to go to Norway week 33 and we asked if the treatment that week could be postponed a few days, but now JA is not actually sure if he wants to travel because of the swine flu... so let's see.

Renovations done

Thank you wife for keeping up this blog during my absence!

Good news! The kids room is now done with walls and ceiling painted, new floor, all lists renewed and a new IKEA closet assembled. If there will be another renovation project in future, we're definitely going to get some carpenters in.

I was a little unlucky and had to go on a sick-leave in between. I came down with fever and a throat infection just as we had put the kids to grand-parents to free up some time for the renovation. I had to check in at the hospital but the doctor sent me back home after a check-up and blood test. I spent the weekend watching Seinfeld on DVD while waiting for the fever to pass. After the weekend I visited a doctor again and she said I now had developed pneumonia. I just finished the antibiotics and feel otherwise fine.

And something not related to diseases. A friend of mine took me rowing on one of the lakes earlier this summer. While coming back we enjoyed a spectacular sunset as you can see in the attached photo.

Two hospital visits

Last week on Thursday Jan Arne's platelets were back over 100 and he received Camptosar and Erbitux and started two weeks of Xeloda.

At weekend we went to my parents' place and from there we drove to visit a friend's family who moved away from Tampere last year. They have almost same age kids as we do so us parents could just relax while kids were playing nicely by themselves. In theory.

After the visit we drove back to Tampere with Jan Arne and left the kids with my parents. The plan was to renovate their room while they are gone. Well, things don't always go as planned. The room was of course a lot more work than we thought even though we thought we were being realistic. The walls are still waiting for the first coat of paint and the old floor is there, new floor still in packages. I was supposed to go to my parents tomorrow while Jan Arne would finish the room, or as much as he would have energy for, as today was the chemo day again.

But the platelets were back under 100 again so they dropped Camptosar and gave only Erbitux, but told him to continue with Xeloda. Nice for him (less side effects, more energy for renovation) and for cancer (less poison). Except now he is back in hospital with some fever (anything above 38,5C and he has to go to hospital and he had 38,8C) and sore throat.

So I guess this is it for the blog today and off to do some painting.

(My pet peeve for today: why is it impossible to hire anyone to do the painting and the floor in this supposedly-recession-time?? I thought renovation guys didn't have enough of work. Somehow we didn't get anyone to be interested in coming here to do the room for us until August).

Update II

Can't think of a good title this time. Just a brief update from the wife again.

So we figured out the treatments are supposed to run like this: camptosar and erbitux for two weeks, then erbitux alone the third week, and then back to both campto and erbitux. Xeloda always starts for two weeks (as pills) when camptosar starts.

And as soon as we had figured this out, Jan Arne's platelets dived again last week, and he only got erbitux and had to cut xeloda short too, only took it for a week.

Tomorrow (Wednesday) there's another blood test and on Thursday, we are again clueless if it will be campto as well if the platelets are back up, or only erbitux. And who knows about xeloda.

On the positive side, the nausea and stomach cramps caused by camptosar are now under control with medication so hooray for that, in case he gets campto this week.

Then again, the summer is finally here, http://www.fmi.fi/saa/paikalli.html?kunta=Tampere, as I read it now it says "25, 26, 28, 28, 28" for the next five days. So we'll just try to keep cool until Thursday in many ways.

Otherwise Jan Arne is doing fine, he went for a long bike ride today etc. His hair has started to come off finally, but then again that does not really influence his ability to cycle... By the way, I guess we have forgotten to share that we got some results that Jan Arne's cancer is not hereditary (HNPCC). Which reminds me we had Jan Arne's sister here for over a week and we had a great time, despite the lousy weather!

If someone is interested in reading some cancer news here's a pretty interesting bit:
http://www.cancercompass.com/cancer-news/1,15813,00.htm

Jan Arne, next time it is your turn to write!

Update

It seems the Wife has taken over here! Jan Arne is ok but busy with work as it is the last week before his summer holiday.

Last week, contrary to what we thought, Jan Arne did not get Camptosar, only Erbitux. As he finished Xeloda the same day, it has been a bit easier week for him, and the appetite is back too. Interestingly enough as well, the platelet count keeps rising. Other blood test results have been ok too, only leucocytes had dropped a bit below the normal margins, and infection values were up a bit. The Erbitux rash is still there, oddly traveling from one body part to another (from face, neck, shoulders, to arms, to chest etc.). Medicine and biology sure work in mysterious ways. Other than that, business as usual.

Tomorrow (Thursday) is the day for the doctor again, and for probably starting another round with all of the three medicines. Guess we have to ask in more detail about the planned schedule :)
And on other fronts, on Friday we will get a visitor from Norway and on Sunday a visitor from Austria and from Monday both Jan Arne and I will be on holidays! Sounds like a plan :)

Rash and other fun stuff

Jan Arne has not apparently had time (or energy) to send an update, so the wife here again, in case someone out there is wondering how he is doing.

Jan Arne has now had two treatments with the new combo, third tomorrow. They give Erbitux and Camptosar every Tuesday, and Xeloda Jan Arne eats twice a day for two weeks. The side effects came almost immediately after the first dose. Nothing huge, but these poisons are obviously not as much fun as the earlier ones. The rash on face and scalp is quite bad, but not as bad as I thought it could be. For Jan Arne of course it is annoying, as it can be quite itchy. He has not really had nausea or diarrhea but he's not been 100% either, not eating as well as before. And he's been quite tired. All in all, I bet life without chemo would be nicer.

On the positive side, the rash is supposed to be an indication that Erbitux is working. Also, in the blood test last week, a week after the first dose, the platelet count had gone up to 118. So if the doc was right and it is the tumours that kept the value low, a higher platelet count sounds good, maybe it indicates that the new combo is kicking the tumours' butt.

News from other fronts: Yes Norway won the Eurovision Song Contest, and Yes I voted for Norway too, and Summer is in Finland: 29C yesterday and 10C predicted for Thursday, what can be more Finnish than that.

The New Combo

The Wife here updating the blog for a change.

Today we had a doctor's appointment again, this time with the "head guy" so we were happy. The platelet count was still below 100 but the doctor said that now it looks like the disease itself is keeping it low. This means that the tumours may secrete something that keeps the platelet level low. However, as it has been low but on the same level for a while now he said the treatment can be started again so they started today.

The new combo is irinotecan (brand name Camptosar) and cetuximab (Erbitux) as injection, once a week this time, and the old friend capesitabine (Xeloda) as tablets for two weeks. The set of most common side effects from irinotecan is nausea, diarrhea, hair loss, and from cetuximab an acne-like rash in face and upper torso. There are effective medicines against nausea and diarrhea, and the rash may be milder with proper body lotions, and with hair we will just do the regular summer cut for Jan Arne already. But keep your thumbs up or pray, whatever suits you best, that the side effects will be on the mild side. There is, however, a chance he will finally start looking a bit different though. This far you have not been able seen at all that he has cancer.

We also asked about the CT scan results as the doctor last week could not say much about them. This is what the "head guy" replied: The unclear borders of tumours indicate that they may be growing (especially interpreted with CEA value). The mention in the CT scan report about lymph nodes next to liver being small means that they are normal size but that does not mean there wouldn't be any cancer cells in them. And about the number of tumours in liver: the six whose measurements we have been following (sixth one supposedly no longer seen in the most recent scan, according to the radiologist report) are the biggest and measurable ones, but that does not mean that there would not be other smaller ones in the liver as well. So no positive news really but I guess we already knew the answer.

Let's just all now hope (and keep our thumbs up, and pray, again whatever suits you) that the new combo will do the deed again and kick the cancer back a few notches! It is indeed a battlefield, no wonder they use a lot of war metaphors when talking about treating cancer.