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.

Change

The doctor called me up this afternoon as she promised. They had discussed my situation in the department meeting this morning. They had come to the conclusion that the current chemo regime is no longer working as the tumours have not decreased in size significantly since the February CT scan. My new regime will contain only one drug which is marketed as Camptosar. I will get it as IV once a week for four weeks in a row. Then there will be a two weeks rest period. The plan is to start it next week if my platelets count is good enough.

I asked why they wouldn't combine Camptosar with Avastin and she said it is because of my the situation with the platelets as Avastin could also have a negative impact.

In yesterday's discussion with the doctor, my wife asked about a drug called Erbitux that could be combined with Camptosar. The doctor promised to bring this up in the department meeting. In today's call she said that they will add Erbitux to my new chemo plan only if my cancer cells "express EGFR". Actually, I've no clue what this means even after reading about it. They will use the biopsies of my tumours taken last summer to determine EGFR expression. If there is a positive finding, they'll put Erbitux in as well.

The Eurovision Song Contest festival is on. My wife is a big fan. I would say there's one country this year that has got something special. It's Armenia with the song "Jan, Jan". According to the Norwegian media, Norway is again among the favourites.

May scan

Yesterday I was supposed to finally start the now twice postponed treatment round, but the platelets count had further declined compared to last week. The value was now 78. The nurse said they would postpone the treatment with another week.

Today I had the doctor's appointment where I got to hear the analysis of last Friday's CT scan. I was quite nervous this time and expected to hear some negative news. I had the increased CEA value particularly in mind. The senior doctor I thought I was going to see had taken a one week holiday (!). His deputy was one of the young doctors we have met before.

The situation in the liver is roughly on the same level as in February. The strategic measures are now:
* 3,0cm x 2,7cm (in February 2,7cm x 2,6 cm)
* 6,9cm x 4,5cm (in February 6,7cm x 4,2cm)
* 6,6cm x 2,8cm (in February 7,6cm x 3,7cm)
* 3,1cm x 2,3cm (in February 3,1cm x 2,2cm)
* 1,2cm x 0,9cm (in February 1,1cm)

The sixth tumour they measured in February to be 6mm in diameter can no longer be seen. The report also mentioned that there are no new tumours and that some measurements were difficult as the edges of some tumours were unclear.

As a summary, some of the tumours are still big, some have increased in size, some are the same size as before and some have shrunk. The doctor didn't give a clear conclusion but she said it may be the current chemo regime is no longer working as the tumours have not decreased in size significantly. There will be a department meeting tomorrow morning where my case and treatment plan will be discussed. She would call me in the afternoon and give me an update. The senior doctor will be back on Monday and probably make the final call.

We also discussed the issue with low platelets count. The doctor said their practice is to wait until the body recovers and starts producing platelets normally. Re-fill of platelets is done only when the value goes below 20 which means the situation is life threatening. We said we are a little worried about this as it has now been three weeks since I stopped eating the Xeloda pills and five weeks since last dose of Avastin. We also asked if there could be other reasons for low platelets count than the chemo. Could the cancer for example have spread to the bones where the platelets are produced? The doctor said no as such a situation would be seen in other blood values and they all are fine. We agreed I'll wait for the next blood test (Friday or Monday) and cross my fingers that the count is up.

Vappu

I checked in at the hospital yesterday morning just to find out that the platelets count in yesterday's blood sample was still too low to start another round of chemo. The value was now 87 so it's roughly at the same level as one week ago. The nurse consulted the doctor who postponed chemo by yet another week in an attempt to give the body more time to start producing platelets normally.

I asked to see the doctor to hear his analysis of the situation but he had another patient. I didn't want to hang around and wait as I have an appointment with him next Tuesday for the CT scan results, so I left.

This weekend there was the traditional May Day or "Vappu" celebration in Finland. I looked up in Wikipedia and found a page on Walpurgis Night where there's a pretty good description about the Finnish traditions. This is the time of the year when everyone drinks home-made mead ("sima") and eats home-made doughnuts and when students from the technical university take over. You see them wear overalls and white student hats and run around doing various rituals. Though the rituals seem to vary from place to place, a common nominator is that there's a bit of alcohol involved. In Tampere, the dipping of first-year students into the river downtown is a popular show. Another tradition is that everyone that has completed high-school will take their white student hat on and get downtown.

Round 14 delayed

As the CT scan got delayed the doctors said I would continue the usual three weeks chemo cycle. I was supposed to start round 14 yesterday, but a nurse from the hospital called me up and said that the Platelet count in Friday's blood sample was too low to start chemo. Platelets have an important role in stopping bleeding. A normal value is between 150 and 360 and mine was 88. This is a typical side effect of chemotherapy and though my value has usually been on the lower end of the scale it has never dropped below 100. The nurse said the doctor had ordered a one week delay in starting the chemo. Next Monday I'll have to give another blood sample before hopefully getting chemo on Tuesday.

The other blood values were fine from the point of view that I'm a cancer patient. They also took the CEA value which had gone up to 179,8 (it was 108,9 on Feb 22nd). I got a little worried about this as it could indicate that tumours have started growing. The nurse said CEA is always used together with the pictures from the CT scan and that CEA could go up and down for other reasons as well. I'll simply have to wait for another two weeks until the CT is done and pictures are analysed.

In the evening I went orienteering and ended up as number 42 out of 150 on a 4km track. I came out of the woods with a face shining like a red light bulb. Next time I have to force myself to walk not to run through the woods.

Crete

We returned last Sunday from a week's holiday on Crete. It was all in all a very successful trip except for the fact that my wife had to go and see a local doctor immediately after the arrival. It turned out she still had an ear infection. The doctor prescribed her with another round of antibiotics.

The hotel had an excellent outdoor area for kids including big lawns, orange trees and a children's pool. Luckily we had the in-laws with us who helped out a great deal running after our youngest kid. He was just all over the place.

The weather was pretty good except perhaps the day we arrived. There was a chilly wind from the sea and I started regretting I had only packed shorts and t-shirts. Luckily it got warmer the next days.

We rented a car one day and took off into the mountains. There is lots of nice nature on the island and orange trees everywhere it seemed. Our youngest was more interested in using oranges as football instead of eating them. In the evening we left the kids with the in-laws and drove off to the city of Chania. It happened the be the night when Champions League quarter finals were on. There was a TV screen showing football in every single pub and café down town Chania. My wife was kind enough to let me pick an ice-cream bar where they showed Manchester United.

On the medical front very little has happened. I was supposed to have a CT scan on Friday. While waiting at the hospital a nurse came to tell me the CT machine had just broken down. There is another machine at the hospital but it was so fully booked that they had to reschedule me. I got another time two weeks from now.

Genetic testing

I started the 13th treatment round after all on Monday even though I'm on antibiotics. The doctors said it's fine as the infection level (CRP) was low and blood values were otherwise fine.

Some time ago I asked the doctors if they could run some genetic testing on me to try and identify if it is some gene mutation that may have caused my cancer. Though this is a vastly complex area there is already knowledge of some gene mutations that will increase the risk of colon cancer.

On Wednesday I had an appointment with a doctor specialised in the area. She was very knowlegeable about colon/rectal cancer and had also studied my case well. She asked why I wanted to do this. I answered the only reason is to pass on knowledge to my family and especially our kids.

For one hour I was briefed about gene mutations, cancer and ongoing research. I should have brought either my wife or a voice recorder with me as I can't recall it all. She said I could call her any time if I had questions or wanted to know more. I answered it will probably be my wife that would call her.

About gene mutations, some are inherited and some are not. Finland is in front line on research of some of these gene mutations, HNCPP in particular. People diagnosed with HNPCC have a very high risk of developing colon cancer during their life time. The probability I would have HNCPP is less than 20% though.

There is a good system in Finland for follow-up of families in our situation. As an example, she explained our kids would be followed up once they turn 18.

The next step is that she'll order the testing of those two biopsies they have already taken of me (one from a liver tumour and one from the rectal tumour). In addition I had to go and take a blood test they will use for DNA analysis.

Wave of flues

The entire family has been hit by a series of flues and infections for a few weeks. First out was the youngest that we had to take to the doctor. He was diagnosed with an ear infection, in fact the fourth ear infection this winter, third in March! Hopefully the last. Next out was our oldest son who came down with a regular flu. Then my wife and myself got it and it seems determined not to give in easily. On Friday both of us went to see a doctor. The diagnosis was an ear infection for my wife and a sinus infection for me. We are both on antibiotics now.

Tomorrow I'm supposed to start treatment round 13, but the doctors will probably delay it because of the antibiotics. Hopefully they won't delay it too much as we've booked a one week holiday trip to Crete and we are leaving soon.

Winter

We've had a consistently good winter in Tampere since the beginning of the year. That, in my opinion, means that skiing and skating conditions have been excellent. There are tracks for skiing on most of the lakes and woods around here and the city takes care of keeping them in good condition. On Sunday I went for a nine kilometer trip on the closest lake. The sun was shining for a change. The feeling of warmth from the sun made me think of skiing in Norwegian mountains at Easter time. Not that I have done that a lot, but those few times have been fantastic experiences. The dreams of Norwegian mountains slipped away when a woman overtook me. Slightly frustrating and I tried to blame my skis. The real reason is rather my physical condition. I'm otherwise fine but have been a bit sloppy with exercise. It also seems all those cafe visits during the autumn have had an impact and there are now some extra kilos to drag around.

Last week we had our sixth wedding anniversary. It was in the middle of the week so no big celebration. I guess the celebration was already on Saturday when we went to Vantaa Ikea without the kids. On the actual anniversary day I picked up the kids from the daycare and bought a bunch of tulips from the local grocery store. I naturally tried to hide for my wife the fact that I'd put in such little effort in getting her flowers. After the kids went in bed we ordered some takeaway food from a Turkish restaurant close by. While eating we watched Michael Palin's "Around the world in 80 days". At some point I fell asleep.

Going public

I decided to remove the access control to my blog. It is now open to the entire internet. Because of this I edited some of the old blog posts and removed all names and contact details.