Third day - pretty eventless

• I'm getting there 
  
• They pick me up at the exact minute
  
• I'm taking off my shirt and lie down
  
• They ask me to move up a little bit and put the head mask on
• Two minutes later the radiation starts. 

10 fields, the head unit turns to the lower right and two fields are radiated. The head moves to upper right, another two fields are radiated. The head unit turns all the way to the top and I can look at it from under neath - another two fields. Upper left and lower left follow. 

This time I've counted the seconds for every field. Based on my counting I guess on field receives between 15 and 25 seconds radiation. 

My biggest concern is that my oral mucosa is being affected more radically than in average. I'm concerned about it because of my special condition. I haven't been talking about it yet but I have a "autoimmune polyendocrine disease type I - APS-1". Maybe I'll provide more background on it later but for the start: APS-1 usually comes with a mild immune deficiency causing persistent oral candida yeast infections.  In my case this candida yeast infection is what troubles me the most with regards to APS-1. There are other features active in my case but the candida is a real pain. I'm worried that with radiation this becomes even worse. Most likely I'll know more in about one week.

Second day - doesn't count

Ok - I sit down in the waiting area and two minutes later a maybe 25-30 year old operator sits down next to me and explains that the system crashed. "Unfortunately we can't do any radiation today. The technicians are on their way. We've spoken to Prof. Glanzmann and he proposed to do two sessions in one day next week.."

Wait a second. This isn't enough information - it might be routine for you but I need more details to feel comfortable. After making my point and asking to speak to Prof. Glanzmann it takes them a few minutes. Finally I have the chance to get more details.

How many times do these systems fail? Turns out a few times a year at least. Usually it's the mechanical part that controls the radiation field. This is done with many little lead pins (picture). Each of them supposedly has it's own motor and.. ..  well you get the picture one of the motors had an issue.

What happens if you can't do a session - do you just continue the next day and add one at the end? Not really - it seems to be important that the entire therapy is completed within a given timeframe. Instead of adding another day at the end they want to do two sessions in one day. The sessions need to be at least 6 hours apart. In rare cases 4 hours would work too. 

I've been told, that they are using 2.12 units per session for my therapy. This is a slight acceleration over the standard of 2 units per session and I've also learned that I'll do 33 sessions. Initially I was told 30 sessions. 

Why is it important to not have bigger breaks between radiation sessions? It looks like healthy cells don't really benefit from longer recovery time but tumor cells benefit from longer breaks. They seem to become more active during longer breaks. This doesn't make too much sense to me and my doctor couldn't really give me much more details. He said the phenomena isn't understood well. He also says it's only proven in a microscopic environment. 

Can you control the effectiveness of the therapy in the middle by doing a CT to see if the tumor shrinks?  This isn't really to relevant for me since we have removed the primary tumor prior to this therapy with surgery. While doing the planning CT they have discovered suspicious lymph nodes. So I was thinking when we are half way through the therapy we could take a look if the lymph nodes are still suspicious. The issue is that you can't assume the tumor shrinks linear while doing radiation. The radiation changes the DNA of the tumor cells but as long the cells are not splitting nothing visible will change. Whether the radiation is having a positive impact or not can only be seen when the tumor cells are splitting. More active tumors split cells faster. Overall it means, that even if the tumor isn't shrinking while you are half way through with your therapy, radiation still might be effective. Obviously if the tumor is shrinking, you know that your therapy is working (at least a bit).

Even at the end of the therapy there might still be tumor cells around but they could go away again once they are splitting. 

I don't know if there is a way to enforce the splitting or if it can be made faster. I also don't know if DNA samples are being taken from time to time for research purpose. Would be interesting to know. 

I wasn't very happy how the radio-ontology department was communicating so far but they are more than willing to answer any questions that I have. The issue is just  that without some background details my questions are dull. I depend on an active communication - more like a push so I can start to pull information. 

After all the talk I've managed to squeeze the lost day into a Saturday session - usually they don't do Saturdays. 

First day - a total of 10 radiation fields

The green part of the image on the left shows the area, which should receive radiation. You need to think of image as looking at the neck. 

The white area on the top shows the teeth.  The area was planned by the radio ontologist. The volume of radiation was planned by health physicists.

To make the radiation more tailored the area is being divided into multiple fields. In my case 10 fields. The radiation for every field takes less than one minute. From field to field the system is being repositioned. 

Besides maybe feeling a bit claustrophobic I didn't feel anything. Today I've also received the plan for all sessions. It looks like I have 35 sessions. Need to find out why. 

G

A little background

In January 2006 I got diagnosed with a squamous cell cancer (in German also called "Plattenepithelkarzinom"). Usually this type of cancer can be found on the side or lateral border. In my case it was found on the tongue surface in the middle maybe 1/2 inch away from the tip of the tongue. 2 1/2 years later, after having done about 10 surgeries I'm starting a radiation therapy. 

10 surgeries might sound awful but so far we've always tried to find the balance between being in the safe side and fighting the cancer effectively. The good part is, that besides a few weeks where talking was more difficult  I didn't lose my speaking capabilities and I even can taste food still very well.

The bad part is that my cancer is recessive and we don't really know why. Because the tumor spread to the  lymph nodes we had to remove them. Initially only on the right side. That was about 1 1/2 years ago. At that time only one node was positive so we decided to not do a radiation yet. This early summer I also had to remove nodes on the left and because more than one node was positive we've decided to finally go ahead with the radiation therapy. 

Preparation took about three weeks. I'll write more about it. Today the real thing starts. I'll try to take some pictures and document everything. The reason why I'm doing this is to provide as much details as possible so that people can learn more about what to expect. 

I don't know yet if it will be very tough for me or not. What I know so far is that every person will react differently and that side affects are different from person to person. 

In general I have a pretty good feeling. I believe this will help but let's see what happens. 

Stay with me.

G