Wednesday, September 10, 2008

Day 30 & 31

Business as usual plus meeting with dentist and radiation oncologist. They all hope that I won't experience a post treatment peak with regards to the side effects and are satisfied with the current results.

I hope too, that the side effects won't peak any further. Having seen some other patients I must be happy with how it went so far. I've lost about 7kg (went from 71 to 64) but I've been told 10% is somehow not to bad. I've always known that my oral flora will react stronger and hope it will recover soon. I've learned a bit better to eat without taste and expect that to recover too.

We don't know yet how effective the treatment was but I'll post the outcome in about 5 weeks.

Two more days to go .-)

Friday, September 5, 2008

Day 25 - 28, radiation is to kill tumor cells

The last few days I just did the usual program. Met with the radiation oncologist and my neck, nose and ear specialist. You wouldn't believe how different they are with regards to communication and thinking outside of the box. The radiation oncologist isn't interested, willing or motivated to look outside of the radiation field at all. When I've challenged her with my concerns and questions about the massive side effects, the unknown symptoms like "fatigue" and the gap that comes from not looking at the body as a whole she just mentioned she wouldn't have time to work on anything outside of the radiation itself and she wouldn't know how to methodically approach symptoms like fatigue. She is in that field for more than 15 years and has treated hundreds of patients. From talking to at least 20 other radiation victims I can tell you, every single one has to deal with this symptom.

Even though I've been able to cope with the treatment so far and I believe it helps I cannot lose this thought, that the approach itself is systematically wrong. Given 40 years of development and research I would expect better results than a success rate of 60 - 70 %. They haven't found better ways to kill oral tumor cells yet so they have to stick with it. Maybe they haven't done as much research as with other types of tumors as this type of tumor is relatively seldom.

The neck, nose and ear specialist on the other hand is very approachable. When I was talking about the fatigue with him, he shared with me some of his experience and he confirmed that many radiation oncologist deny the existence of the fatigue. They deny it because they cannot measure it.

That's the issue with scientific medicine. It requires measurability. The human body is far too complex and sciences hasn't figured out how most of the immune system works for example. What impact for example the mental conditions have is unclear and because it's not measurable it isn't a part of the current scientific medicine.

Going through this treatment makes me realize how much scientific medicine isn't covering. It's a bit scary.

Anyhow - I have two days rest in front of me and then another five days to go. Afterwards I need to recover, wait 4 - 6 weeks and do another PET. The PET won't only show if there are still bigger lymph nodes around but also if they are sugar active. Sugar active would be a bad sign and mean they are most likely still tumor active. I feel confident they won't be but let's see once I have the PET.

Monday, September 1, 2008

Day 24 - it's not only physical

It took me about 5 days to recover from the cold. I'm not losing as much weight per week anymore and my energy level is acceptable. On the other hand my mouth is very soar and my skin around the neck starts hurting and bleeding.

The therapy is heading into it's last third and as it does I suddenly start realizing how little  mental energy I've left. Every little mental noise is getting at me as if it was amplified. I'm not stress proven anymore. Living with me must have become harder for my loved ones. My 4 1/2 year old daughter and my wife (a few days away from giving birth to our second child) are paying their tolls. That's not fair and I'm trying to fight it. I'm meditating. One of my themes is compassion for others but quite frankly I often feel empty. How can I feel compassion if I'm empty. From time to time I would like to escape all social activities. 

All the discussions at the beginning with the experts where about the side effects, the duration, technicalities and logistics. Very little went into the mental aspect. Of course everyone tells you this is heavy stuff but no one can tell you exactly what is happening. 

Why is it heavy? What makes it heavy? As you might know one cannot feel anything during the radiation itself. It's like an insensible plague. I understand that the DNA of healthy and unhealthy cells are being altered but I don't understand how much energy and what kind of energy that takes. It would really help me if I could understand more but I'm not a medical expert and I don't have the energy to become one. 

Friday, August 29, 2008

Day 21 - 23

Nothing special the last few days except that I've been sick on top of the radiation. Today I met with the radiation oncologist too. She said the side effects are in line with the dose. Sounded funny but I guess it's ok. I have 10 more days to go. Will be interesting to see how quickly I recover from the cold.

Tuesday, August 26, 2008

Day 20

I'm just tired. Need to do lots of eating before day ends. Hey - is there nobody who can eat for me?

Monday, August 25, 2008

Day 18 & 19

Two days, two computer crashes and one time I almost freaked out. On Friday the computer crash took 5 minutes to fix but today it took 15 minutes. I was ok with staying put for most of the time. It's not easy if you can't move at all, can't open your eyes, can't turn anything above your chest. With the head mask on I just can't move and I have to wait until the angels release me.

Usually one radiation therapy takes 12 minutes but today it took 1/2 hour and that was to much for me. At the end I really felt uncomfortable but hey - I'll clear my memory tonight and day 20 comes tomorrow.

The radiation-oncologist seems to be hard working too. She answered my email over the weekend and told me, that the control CT have shown that the lymph nodes are showing damage. In size they've remained so far but she said this isn't important. I've asked back if damaged is a good sign and she said: "damaged is very good, meaning the remaining cancer cells most likely won't be able to divide anymore.

Wow that is good news. Bad news is the condition of my tongue. It looks really alienating to me. Can I buy a new one? It's swollen and infected. I'm not surprised but I still don't like to think much about it. I don't take painkillers right now.

Don't want to write about what I eat anymore. Just thinking about eating makes me feel sick a bit. It's not a pleasure and I look forward to other days with regards to that.

Running is still going well. Did 13 km today in 58 minutes and 250 meter inclination.

Thursday, August 21, 2008

Day 17 - double it and cross off the first half

It was a busy day. It started with a control CT (computer tomography) at 9:30am, followed by a radiation, followed by acupuncture at my friend's place and ended with a second radiation session at 6pm.

I'm still losing weight and had to increase the liquid food dose. Strange enough the swallowing pane has almost gone away but appetite is low as ever. Don't like yogurts anymore and eating bread is a time consuming effort. My body wanted raw meat today so I got myself a "steak tartare" for dinner. It seems to be snotty to eat steak tartare even though you can't really taste it but I've reached the point, where I give my body what it's asking for.

Most likely because I was busy all day long I didn't feel fatigue until now. No running today but 10km yesterday and some biking planned for tomorrow.

  • 2 slices of bread with jam
  • water
  • liquid food
  • some vegtables and risotto
  • liquid food
  • stake tartare
  • apple

Wednesday, August 20, 2008

Day 15

Session 15 was happened yesterday. The sessions have moved from the afternoon to the morning. Before the session itself I had a quick chat with the radio oncologist. She was happy with my status but referred to the control CT from tomorrow to get more insights about the current status. Eating and weight continues to be the main concern of everybody. I lost my interest in yogurt .-( and eating kiwis is a torture but I want them.

In the waiting area I've met a women and a men. Both of them have to deal with thyroid glands tumor. Both of had their primary tumor being removed mid 90s and only after the third recessive comeback they went for radiation. The women had just completed her treatment, the men just started his.

We made a conversation for about 10 min and shared each other our history. It was really great to see how other people cope with it. They both were very positive about it and seemed to be rather happy people - great inspiration for me.

proj on

Monday, August 18, 2008

Day 14 - how to prevent a lightning storm in your mouth

Every morning and evening I have to put these braces on. They are tailored made for me and before putting them on I smear one of two lotions on them. The lotions are to treat the dental enamel.

Funny enough I also need to wear the braces during radiation. Today I've asked why. Turns out that without them the radiation of protons can turn into electrons and cause a small lightning storm in your mouth. Of course I don't want that to happen. Uff - I hope I don't forget them ever.

The weekend helped me to recover. Today felt better than last week. I'm sure the weekend helped but I recovered better than a week ago. Maybe this is thanks to the acupuncture therapy I've started on Thursday. The idea is not to fight cancer with acupuncture but to ease the negative side affects caused by the radiation. The therapy is divided into two parts: acupuncture for 30 min followed by a massage for 60 min.

I don't understand most of what is going on with this cancer and the radiation and why my immune system couldn't kill the cancer cells. I also don't know if I ever will be healed fully, although I'm positive about it. I know though that no matter what, I'm still alive and there are ways to improve quality of life. In physical but also in a metaphysical matters. I feel it's my job to explore them and that's what I'm doing.

I think I've also figured out why I lost some weight even though I forced myself to eat a lot. It must be related to an insufficient supply of Cortisol. I may talk about this later but just in short - my body doesn't produce any by itself and I need to substitute it. During times of greater stress one should increase the dose. I may have not increased it sufficiently. The risk of suppressing my immune system with too much Cortisol was too high for me, so I kept it low on purpose.

I ran 16km today. Could eat without painkiller but had to take a sip of water with every bite. Didn't eat enough. Tomorrow is number 15 and on Wednesday is maintenance day. Because of that I'll have to do two radiation sessions on Thursday.

  • one cup of coffee
  • croissant with jam
  • four slices with bred
  • yogurt
11 o'clock
  • liquid food from the doctor
  • Pasta with tomato sauce
  • cornflakes with milk
  • water melon

Friday, August 15, 2008

Day 12 and 13

The position of my head, neck and tongue needs to be the same for every session. Head and neck are controlled by the head mask. For the tongue they've given me a piece of durex which gets hard after a while. The ceremony for each session is the same:

  • I walk into the room
  • "Hello Mr Scherl". "Hello together"
  • I take off my shirt
  • They cheer me on because of my athletic body (just kidding)
  • I lie down
  • I get the mouth piece
  • They pull over the head mask and fix it
  • They bring me into position
  • They leave
  • 10 fields are being radiated
  • They come back and pull off the head mask
  • I return the mouth piece
  • Get up and get dressed
  • "Good bye". "See you tomorrow"

The last two days I took some liquid food for the first time. It's ok. Not a gourmet dinner but honestly I don't crave for one right now. My body craves for citrus fruits, water melons and cucumber salad. Because some of the food burns right now I make my tongue numb from time to time before eating. Doctors say my tongue reacts above the norm but not extremely. They want to keep the dosis as is and do a control CT next week. I look forward to the control CT - the most positive result would be that my tumor responds to the radiation and the positive lymph nodes are getting smaller. Worst case - nothing changed. Absolut worst case but unlikely - the lymph nodes got bigger.

  • bread and jam
  • tea
11 o'clock snack
  • liquid food
  • cold vegetables, some fresh cheese and some couscous
  • noodles and some chinese vegetables
I couldn't exercise the last two days but will go for a run or biking tomorrow. Didn't sleep alot from Thursday to Friday but was in a better mental shape on Friday. Eating is actually more eanking - I take a sip of water for every bite to make swallowing easier.

Wednesday, August 13, 2008

Day 11

In addition to the session I also met the radiation oncologist. Her only concern was my weight. She also mentioned I should make sure to not lose any weight. I got some fluid drugs for local anesthetization. I can take it 5 minutes before eating. It will make eating less painful. 

I also was told to not go swimming anymore. The skin gets irritated and I should not irritate it further with water and chemicals. The risk is, that I'll get some open wounds on the neck. The norm is to have at least something like a "sunburn" and I should make sure I stay with the norm.

  • three slices of bread and jam
  • potatos
  • ham and eggs

Tuesday, August 12, 2008

Day 10 - one trauma on top of the other on the of the other ..

It's tough if you don't feel any immediate pain but feel more and more tired every day. Maybe today wasn't such a good day because I had to acknowledge I'm losing weight - 2 1/2 kg so far. I thought I'm eating a lot but apparently not enough. On top of it I had no appetite today and even without mentioning anything my neck, nose and ear specialist, whom I met today again, preached to me I should eat as much as possible. Independent of my appetite and if I can't eat enough I should get liquid food asap. With a smile he advised to drink the food cold because it wouldn't taste.

As said my tongue tissues are irritated - it's called mucositis and I've already reached grade 3 out of 3. On a positive note , my throat isn't infected yet. He also believes that the knot in my tongue (stopped being painful a few days ago) might most likely not be a remaining tumor. He was talking about a salivary gland in the tongue that might have become irritated from the surgery. Hmm, I didn't know there is such a gland in the tongue itself. Need to check on this.

He also mentioned: If I would respond to the radiation therapy the lymph nodes in my size (1 cm x 1.4 cm) will be gone most likely after 2/3 of the therapy. This is all based on past experience and might be different from case to case.

Tomorrow I'll see the radiation oncologist. I'm still keeping the work out up. Yesterday I went for an 15km run with 450m alltitude difference. While I'm working out I feel great. The good feeling ususally lasts for two hours post the work out.

  • 3 slices of bread with jam
  • yogurt
  • 2 cups of green tea
  • nothing
  • muesli
  • 1 slice of plum cake

Monday, August 11, 2008

Day 9 - you are not the only one

After two days without a session it's a bit harder to get back into it. Nine sessions are done but knowing there are 24 more to come and understanding the impact is exponential I have to admit I'm a bit worried. I was able to recover a bit over the weekend but I often feel tired. On Saturday I got up at around 8:30 and felt tired all day long until I went biking. Biking went well - I'd say I'm able to perform at 90% of my regulare pace. I maybe did 30 km at 1200m alltitude difference.

I still can taste some of the food but it continious to change. The eating is ok - unfortunately swallowing starts hurting. As expected with my condition the oral flora is getting damaged quicker and candida is spreading rapidly again. Over time my candida has developed full tolerance for all regular anti-fungal agents. There are only a few options left but since I'm experienced with candida, I can get the medication I need. I've decided to do a 5 day Cancidas treatment. As always these drugs are extremly expensive at the beginning. A 50 mg dosis of Cancidas costs CHF 900 and lasts for one day. Cancidas is taken as an intravenous infusion. Lucky enough I've convinced doctors long time ago to allow me managing these infusions myself. Imagine I would have to go to yet a different doctor for this too. Let's see how candida looks in a few days. It's not uncommen to get a candida infection during radiation but usually you can control it with Ampho-Moronal or Diflucan.

Initially I believed to be one of just a few people who have to undergo oral radiation treatment. I was taught differently. In Zurich they have more than 30 patients every day on the same system. Most of them are older than me. Some of them (including me) walk in and out like picking up some medication at a drug store. Others come in wheel chairs and others are being brought down from the sleeping rooms in their beds. There isn't much talking between patients. I guess no one wants to be a sick man under sick men - I for sure not.

Today before I was asked to enter the radiation room an older man just left in his wheel chair. We looked at each other for a second, turned our faces and a few seconds later looked at each other again. We smiled - not a "hey how are you doing smile" - more like a smile between two kids that just have been caught doing something forbidden. He already got his lecture and I'm just about to get it. Of course we didn't do anything forbidden but it doesn't feel right to be there and maybe that explains why people don't want to engage too much.

  • 4 slices of bread with jam¨
  • two cups of green tea
  • one yogurt
  • one kiwi
  • fish and vegetables
  • some rice and some couscous
  • tuna sandwich
  • fennel & fish & risotto

Friday, August 8, 2008

Day 8 - session 8 on 08/08/08: if that isn't a good sign

Loosing taste? It's day 8 and for the first time I've felt as if food starts tasting differently. Today I had a session at 08:20am. I don't feel as tired as yesterday even though I got up at 6am. Despite of the losing taste sensation or maybe just because of it I treated myself with a great birchemuesli at Spruengli in Zurich.

Looking forward to the weekend without any sessions. The pain in the tongue is a little bit less than on previous days.

The therapy goes on and hopefully leads to a full destruction of all tumor cells. In addition to this process I'm reading more about complementary treatments and efforts. I'm dealing with the cancer for more than three years now but so far, I haven't changed my way of living. The three years can be divided into three phases:

  • initial diagnose and treatment
  • active lymph node on the right side and removal
  • recessive come back with three bigger surgeries including lymph node removal on left side and radiation
If the third phase has anything good about it, than it should be that I improve my way of living. With improving way of living I pretty much mean becoming more aware. Something I wanted to achieve for a long time but never worked on hard enough before.

  • yoghurt drink
  • 3 slices of bread with butter and jam
9 o-clock snack
  • birchemuesli see picture
  • of course some green tea
  • tomato mozzarella salad
  • pork steak and potato salad
  • another tomato mozzarella salad

Day 7 - still tired

Yesterday evening I went for a 14km run. Couldn't observe any big change in terms of my endurance yet. Regardless - I feel tired during the day and it's an annoying feeling. Only after an 1 1/2 hour nap in the afternoon I felt awake. Maybe it's because of the weather maybe because of the radiation. Will continue to observe.

My taste and appetite haven't been affected yet. I didn't lose any weight so far. I'll try to list what I'm eating at the end of each post.

My mucosa is definitely getting irritated. Candida starts showing more aggressively. Eating though is still ok.

Yesterday dinner
  • fennel
  • zucchini
  • chicken breast
today breakfast
  • yoghurt
  • 3 slices of bread with butter and jam
  • 2 cups of green tea
  • tomato mozzarella salad
  • vitello tonato
  • sandwich
  • mango yoghurt drink

Wednesday, August 6, 2008

Day 6 - nothing special but a bit tired

Don't know if it's the weather or if it's the radiation but I'm feeling tired today. I'm not going to take it like that and will go for a good run later in the evening.

My tongue still hurts and I'm taking some painkillers. The next few days will be more or less routine. I'm at a point where I just have to do every day like a have to pay a toll. On Monday my neck, nose and ear specialist comes back and I'll discuss the PET with him but no special activities are planned.

I'll use the time and work on improving my eating habits. My body craves for more vitamins and vegetables. Instead of having only three meals, I need to carry some smaller snacks with me too. I know it sounds crazy but I'll also do a test for food allergies. I've always wanted to do this IgG food allergy test but never came around it. Traditional medicine doesn't believe in it but I strongly believe that certain type of food isn't beneficial for my well being and well being counts more right now.

Tuesday, August 5, 2008

Day 5 + talk with my radio-oncologist

Today was a totally new experience with the radio-oncologist. It's a she and she was really talkative. The session was scheduled for 15 minutes but we ended up spending 45 minutes.

First we looked at the results from the planning CT and there is really a lymph node in level 3 on the right side that is very suspicious. The size is 15 mm x 10 mm. Even though the node still has a good shape (oval) the shade is making it suspicious. The expectation is that radiation will kill it. Once more I've asked how the killing can be tracked. My radio-oncologist said that a new CT maybe 6 weeks after finishing the radiation will tell. Why waiting so long? Wouldn't a check just after the end make more sense? As said previous the impact from radiation will go on beyond the end of the therapy. Today she also mentioned that most oral tumors react positive towards radiation. It's not always that the tumor is fully being killed but in all her professional time she has only seen once that an oral tumor continued to grow while doing radiation. She was talking about more than 500 treatments.

I've also asked her to look into the PET - wanted to see if we could see and confirm what I feel is a left over in the tongue. Unfortunately they PET people didn't load all the images. Will find more next time. Anyway - my initial thought of doing a little surgery while doing the radiation was dismissed. Not possible. In that case it doesn't really matter to see the PET. I can sense a strange feeling in the tongue and will continue to observe it. Most likely this knot in the tongue is pressing against a nerve and that causes the only pain I have right now. Unfortunately the pain is got more intense and I have to take pain killers. I'm using Ponstan and Novalgin. From all what I know I now still have some tumor left over (lymph node third level on the right and knot in the tongue). Somehow concerning but not really different from the start - we thought this is the case and thus we've decided to do radiation.

Today was also the first day I've felt somehow tired. It's getting better since I had lunch. I'm trying to exercise every day but can't do it today. Although I had time between my two sessions - the indoor pool I wanted to go swimming was closed I didn't have my running gear with me.

Besides the pain in the tongue and feeling a little tired everything else seems to be still OK. I can still taste food as much as before beginning the radiation. Most likely this will change in about 3 - 5 sessions from now. My saliva is still OK too.

Today I've also read an article about alternative treatments. Obviously this is very controversial. My take on it is that I don't want to replace my current treatment with alternative treatments but I'm interested to see how I can complement it. The idea is to make the whole thing to be less painful and to improve overall quality of life. An interesting source on the net is From what I've read so far - this is more than just todays article - people seem to feel green tee has an overall positive affect. I like green tea - so that is fine with me.

The article also mentioned a book from Gerd Nagel, once a very successful oncologist and later leukemia patient himself. "Krebs, was man fuer sich selber tun kann"

Less enthusiastic about positive affects are experts with regards to: Mistel injections. Nagel states the fact that neither negative impact has been found so far. Another useful source about this alternative treatments can be found at Lukasklinik.

Monday, August 4, 2008

Number 4 - done!

Today I had two appointments. One for doing the radiation and the other one with the dentist. While doing radiation I'll have to see the dentist once a week too. One side affect of the radiation is that the jaw-bone won't be supplied with sufficient blood circulation. Infections can lead to a destruction of the bone. Thus it's very important to keep everything under control. This is also the reason why before radiation can begin, teeth need to be checked and fixed  if required. The dentist was happy with what she saw.  

While doing the planning CT doctors have found suspicious lymph nodes. They are located on the right below the middle layer in the front. Today I thought I've felt them to be bigger than usual. Most likely left overs from my last surgery. We had removed about 25 lymph nodes on the left side end of June 2008. Somehow the entire middle layer in the front on the left but we'd also removed 5 on the right side - a little bit lower than the middle layer. As said in a previous blog, in January 2006 the middle layer on the right was already removed. One has more than 200 lymph nodes in the neck. So no worries if they remove 50 - 80. Unfortunately you don't really know the path of the lymph drain. Even though the right side has been removed, drain from the left must have flown over to the right. 

Doctors always said, don't worry when a lymph node hurts. It seems to be a good sign. What they mean is that the node hurts because there seems to be an infection and most likely the node is swollen because of the infection. They say a tumor positive node doesn't hurt. In my case they always hurt. My theory is that they become active once there is an infection. I'll discuss this theory with the guru oncologist once he contacts me again. The oncologist isn't the same person as the radio-oncologist. So far I've treated my cancer with surgery and radiation. Mostly I've been in contact with a neck, nose and ear specialist and the radio-oncologist. Friends of mine also have arranged contact with a guru oncologist who has agreed to look into my case and discuss findings with me. He has contacted me once over phone and apologized for not calling me earlier. He said he has looked into my case but needed to do some more research. Radiation is the right next step he said but if the tumor keeps being recessive there might be an anti body therapy. He didn't know enough about it back then and promised to call me again. You might wonder why there is no formal commitment -  I'm not his patient - he is doing this as a favor to the neck, nose & ear specialist and he seems to be dammed good.

So I guess the nodes I've felt today might be the same as the radio-oncologist have seen on the CT. I've a session with the radio-oncologist tomorrow. Interesting enough I haven't seen here since the first discussion. She was on vacation and I'm scheduled to see here only once a week. The radio sessions are all operated by other staff. 

More about all that after I've seen her tomorrow. 

Saturday, August 2, 2008

Real third day: almost routine

No radiation yesterday due to Swiss national holiday. I guess it won't be as simple going forward as it is right now. The side affects will kick in but so far I'm still keeping up quite well.

The picture I've attached shows the system. It's pretty big. The head unit shown on the picture is directly over my head. It can move almost 180% degrees to the left and right. 

In two days I'll see  the uber doctor. Hopefully I'll get more useful information.

Thursday, July 31, 2008

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.

Wednesday, July 30, 2008

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. 

Tuesday, July 29, 2008

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. 


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.