Right now is the calm before the storm. My last tests and appointments were on Wednesday. The treatments start in a week. Next Tuesday I have my test run with the machine. The way that works is they use the mask they made last week and attach me to the table. Then they take some x-rays with the mask on. I think that is used to help them align or calibrate the machine. Then they test the machine out to see that the treatment plan they created lines up with the positions on the mask or something like that. They don't actually use radiation during this dry run. Once treatment starts they take new x-ray images about once a week. Also half way through they will run me through the CT Scanner again and change the treatment plan based on the changes in tumor sizes.
The treatment plan starts on Wednesday. I get both the Chemo and radiation therapy that day. Because the chemo room at the medical oncologist is full up that day I will go to the hospital for my chemo. It actually works out better because the radiation facility is at the hospital. This makes it easier to coordinate the two. Right now my radiation treatment slot is 10:00 AM. I need to be there 15 minutes before hand to get the shots for the medicine to protect the salivary glands. The chemo appointment is for 8:00 AM. The chemo starts with fluids for a few hours before they give me the actual chemo drug. What will happen is I will start the chemo first. Then they will take me down to radiation when its time. After that I will head back up to the chemo room. By having the appointments overlap at the hospital it will take less time than going to one first and then to another office (1 minute away :-)). Also since the chemo I am having can last several hours (up to 6 I am told) they want me to bring food to eat. I think it is actually a requirement. Did I mention that nutrition and hydration is a big part of this? One bonus when you have chemo at the hospital is that they feed you. I will still bring stuff with me but those of you that know me know how much I love institutional food.
One thing I should note for those of you not from tiny town is that there are two advantages to having all of the facilities that I need for treatment locally. First is that it really only takes 20 minutes or less to get to hospital where the radiation treatment is. The chemo is in a building in front of the parking lot for the radiation oncologist. That is 20 minutes or less, with traffic, from the time I leave my kitchen to when I check in at the front desk. This leads me to the other advantage, parking. First parking is free. No worrying about finding a lot with space or paying for parking or parking in a garage. Also I generally park within 10 spaces of the door to the radiation treatment facility. All the advantages of the latest in treatment technology with the convenience of a small town. This is fortunate because if I had the cancer 3 years ago I would have ended up having to drive at least an hour for treatments plus add in the time to park in a garage and get in the building. BTW I added a link section with information on iMRT and the radiation treatment center at the Cayuga Medical Center. OK. Back to the main topic.
So Wednesday is the start. Here is the basic outline of the plan of attack. I will have 35 radiation treatments. These are 5 days a week for 7 weeks. Of course they are not open on Thanksgiving so I will make that one up at the end. Starting at the same time is the chemo therapy. This is broken down into 2 phases. Each phase has 3 treatments for a total of 6 treatments. All of the treatments are 3 weeks apart. The first 3 are the big ones. They take longer to administer and have stronger side effects. After those 3 there are 3 more with the same drug but a smaller dose. I think they said 75% of the main dose. It doesn't seem like much difference but according to the medical oncologist it makes a difference in the side effects. Along with these last 3 treatments is an infusion chemo of another drug. This is delivered via an IV pump in a pack over 5 days. The plus side is that the treatment at the doctors takes less time the downside is having an IV in at home for the next 4 days.
The treatment schedule is this. For 7 weeks I will have radiation treatment 5 days a week. At the same time I will have 6 chemo treatments over a span of 15 weeks. Fortunately the last 3 chemo treatments should have less side effects and I will be over the worst of the radiation treatments.
While I am definitely not looking forward to the treatments and realize it will be a rough ride at times I am glad that I am finally going to get started. Going through the treatments is unavoidable and the sooner I get started the sooner I come out the other side.
Friday, October 26, 2007
One more test and Chemo U
On Wednesday I had my last test (Yippeee!) and then my chemotherapy education or Chemo U as I call it. The last test I had to have was a PET scan. This scan is designed to see if the cancer has spread to anywhere else in my body. The way it works is you are injected with a radioactive sugar based substance and then sit still for 45 minutes. The fast growing cells absorb more of the radioactive substance than the slow growing cells. The reason for sitting still is to avoid having your muscles absorb more and throw off the scan. I couldn't even read the paper.
After the 45 minutes you are then put into the scanner. It looks something like a CT Scanner. It took around 40 minutes to complete the scan. This is one test that is not offered at a permanent facility in Ithaca. There is a mobile lab that comes to the hospital every Wednesday to do the tests. The substance they use has a half life of around 2 hours so it took about 12 hours for the radiation to completely disperse. During that time I truly had a radiant personality! (Yes, I know don't quit that day job.)
In the afternoon we went to the medical oncologist to meet with the nurse in charge of chemotherapy. This was an education session to let us know what is involved and how to prepare. The chemo schedule is 3 heavy duty sessions scheduled 3 weeks apart followed up by 3 lighter doses of the same drug and an infusion of another one. The 3 big treatments coincide with the radiation treatment plan. The drug they are using helps get any stray cancer cells but also makes the radiation more effective by causing the existing tumors to be more susceptible to radiation treatment. The downside is that this is one of the drugs that can really cause nausea. It only lasts for a day or two if it happens but it is a concern due to the other side effects of the drug. The drug can effect the kidneys. The way to combat this is drink lots of fluids, at least 64 ounces a day. During the chemo treatment they actually spend most of the time giving you fluids. Until you have a certain amount of output (you can figure that one out for yourself :-)) they won't give you the main drug.
This is where nausea becomes a problem. You really need to drink the fluids. To combat this they have prescribed a chewable drug that I bring with me on the day of chemo. I take the first one when I am there and they the other 2 on the following 2 days.
The way chemo works is that it attacks the fast growing cells like the cancer cells. Unfortunately your body also has some good fast growing cells. Things like hair and the production of blood cells. I think they mentioned something about the stomach as well but I am not sure. This particular chemo drug won't affect my hair so I can't blame my continual hair loss on this. It does effect the blood cells and that is a cumulative effect. What this means is that as the treatment goes on my white blood cell count will drop and I will become more susceptible to infection. Fortunately my job and life style in general will lend itself well to minimizing contact during that period. I will be seeing the radiation oncologist daily and the nurse there will be checking me out from time to time to see how things are going.
Back on the nausea front the nurse that did our chemo education provided some good information and even a cancer cookbook. One of the keys to fighting nausea from chemo is to not have an empty stomach. I found this interesting because my only experience with nausea has either been something I ate or from a bender in college. Then you want to avoid eating anything! Here the key is to graze as often as possible. One thing that I haven't mentioned is that between the radiation oncologist and the medical oncologist they are encouraging a diet that I would have otherwise never imagined a medical professional encouraging. All rules are thrown out the window. They want me to consume only whole milk products, no more skim milk during treatments, pack on the calories, eat lots of ice cream. Basically its anything goes. The idea is to eat whatever it takes to keep the calorie and protein content up and the fluid intake going. Now as the radiation treatment progresses and I get the mother of all sore throats some foods are just not going to work out like spicy foods or things with rough edges like tortilla chips. I did ask if they gave me a referral to a cardiologist when all of this is over.
Those were the last scheduled appointments until treatment starts next week. Its been 3 weeks exactly to the day since I first when in for what I thought was a sinus infection. For most of that time the schedule has really been changing day by day with more and more tests or consultations being scheduled. I think I have had just about every scan you can have at this point. There are a few days off until treatment starts next week and then I will finally be able to get into a regular routine. Its not that I am looking forward to the treatments, it will be a rough time, but it is something that has to be done and the sooner I start the sooner I am through it.
After the 45 minutes you are then put into the scanner. It looks something like a CT Scanner. It took around 40 minutes to complete the scan. This is one test that is not offered at a permanent facility in Ithaca. There is a mobile lab that comes to the hospital every Wednesday to do the tests. The substance they use has a half life of around 2 hours so it took about 12 hours for the radiation to completely disperse. During that time I truly had a radiant personality! (Yes, I know don't quit that day job.)
In the afternoon we went to the medical oncologist to meet with the nurse in charge of chemotherapy. This was an education session to let us know what is involved and how to prepare. The chemo schedule is 3 heavy duty sessions scheduled 3 weeks apart followed up by 3 lighter doses of the same drug and an infusion of another one. The 3 big treatments coincide with the radiation treatment plan. The drug they are using helps get any stray cancer cells but also makes the radiation more effective by causing the existing tumors to be more susceptible to radiation treatment. The downside is that this is one of the drugs that can really cause nausea. It only lasts for a day or two if it happens but it is a concern due to the other side effects of the drug. The drug can effect the kidneys. The way to combat this is drink lots of fluids, at least 64 ounces a day. During the chemo treatment they actually spend most of the time giving you fluids. Until you have a certain amount of output (you can figure that one out for yourself :-)) they won't give you the main drug.
This is where nausea becomes a problem. You really need to drink the fluids. To combat this they have prescribed a chewable drug that I bring with me on the day of chemo. I take the first one when I am there and they the other 2 on the following 2 days.
The way chemo works is that it attacks the fast growing cells like the cancer cells. Unfortunately your body also has some good fast growing cells. Things like hair and the production of blood cells. I think they mentioned something about the stomach as well but I am not sure. This particular chemo drug won't affect my hair so I can't blame my continual hair loss on this. It does effect the blood cells and that is a cumulative effect. What this means is that as the treatment goes on my white blood cell count will drop and I will become more susceptible to infection. Fortunately my job and life style in general will lend itself well to minimizing contact during that period. I will be seeing the radiation oncologist daily and the nurse there will be checking me out from time to time to see how things are going.
Back on the nausea front the nurse that did our chemo education provided some good information and even a cancer cookbook. One of the keys to fighting nausea from chemo is to not have an empty stomach. I found this interesting because my only experience with nausea has either been something I ate or from a bender in college. Then you want to avoid eating anything! Here the key is to graze as often as possible. One thing that I haven't mentioned is that between the radiation oncologist and the medical oncologist they are encouraging a diet that I would have otherwise never imagined a medical professional encouraging. All rules are thrown out the window. They want me to consume only whole milk products, no more skim milk during treatments, pack on the calories, eat lots of ice cream. Basically its anything goes. The idea is to eat whatever it takes to keep the calorie and protein content up and the fluid intake going. Now as the radiation treatment progresses and I get the mother of all sore throats some foods are just not going to work out like spicy foods or things with rough edges like tortilla chips. I did ask if they gave me a referral to a cardiologist when all of this is over.
Those were the last scheduled appointments until treatment starts next week. Its been 3 weeks exactly to the day since I first when in for what I thought was a sinus infection. For most of that time the schedule has really been changing day by day with more and more tests or consultations being scheduled. I think I have had just about every scan you can have at this point. There are a few days off until treatment starts next week and then I will finally be able to get into a regular routine. Its not that I am looking forward to the treatments, it will be a rough time, but it is something that has to be done and the sooner I start the sooner I am through it.
Thursday, October 25, 2007
A trip to the dentist and then I get my mask
On Tuesday I met with my dentist in the morning to discuss some of the issues with radiation treatment and then in the afternoon I had my mask made and another CT Scan performed with the mask holding me in place on the machine.
The reason for the visit to the dentist is that one of the side effects of radiation treatment is on oral hygiene. There are two primary dental issues that can occur. First is radiation treatment can kill the jaw bone. That creates complications with any dental procedures performed in the future. Fortunately I spoke to the radiation oncologist and with the iMRT techniques they are using that will most likely not be a problem. The second problem is dry mouth. Radiation treatment can effect the salivary glands and cause dry mouth. This can occur while receiving the treatments and also be a permanent side effect of the treatments. I did not realize the part saliva plays in oral hygiene. It provides a protective coating to your teeth to help prevent cavities. I spoke to the dentist about it and one suggestion was that I chew sugar free gum or sugar free candy when dry mouth starts. This helps generate saliva and protect the teeth. Another thing to do is use fluoride rinse.
In the afternoon I went back to the radiation oncologist office and had my mask made and yet another CT scan done. What they do it have you lie on the CT scanner table and then they put the mask on you. Its a heated up plastic mesh that the form to your face. There is a type of plastic frame on the side that is used to hold the mask to the scanner. Once that cooled on my they took another CT Scan. This one is what will be used to create the computer model for my radiation treatments. I did some research on the side effects of radiation treatment and there is a drug that can be used to help reduce the damage to the salivary glands during treatment. I asked the radiation oncologist about it and he said it was originally developed in the 1950's by the government as a way to protect people against a nuclear explosion. (Doesn't that just sound so much like the 50's?) It didn't work and got put on the shelf. Then sometime in either the 70's or the 80's a drug company purchased it to see if it could help protect against some of the collateral damage of radiation treatments. The way it works is they inject it into each shoulder 15 minutes before each treatment. I will be having 35 treatments so that will mean 70 shots. And of course a side effect is nausea so the prescribed a nausea medicine to go with it. It will mean quite a few more shots than I would like and yet another thing that can cause nausea but to help protect against long term damage I am willing to give it a try.
The reason for the visit to the dentist is that one of the side effects of radiation treatment is on oral hygiene. There are two primary dental issues that can occur. First is radiation treatment can kill the jaw bone. That creates complications with any dental procedures performed in the future. Fortunately I spoke to the radiation oncologist and with the iMRT techniques they are using that will most likely not be a problem. The second problem is dry mouth. Radiation treatment can effect the salivary glands and cause dry mouth. This can occur while receiving the treatments and also be a permanent side effect of the treatments. I did not realize the part saliva plays in oral hygiene. It provides a protective coating to your teeth to help prevent cavities. I spoke to the dentist about it and one suggestion was that I chew sugar free gum or sugar free candy when dry mouth starts. This helps generate saliva and protect the teeth. Another thing to do is use fluoride rinse.
In the afternoon I went back to the radiation oncologist office and had my mask made and yet another CT scan done. What they do it have you lie on the CT scanner table and then they put the mask on you. Its a heated up plastic mesh that the form to your face. There is a type of plastic frame on the side that is used to hold the mask to the scanner. Once that cooled on my they took another CT Scan. This one is what will be used to create the computer model for my radiation treatments. I did some research on the side effects of radiation treatment and there is a drug that can be used to help reduce the damage to the salivary glands during treatment. I asked the radiation oncologist about it and he said it was originally developed in the 1950's by the government as a way to protect people against a nuclear explosion. (Doesn't that just sound so much like the 50's?) It didn't work and got put on the shelf. Then sometime in either the 70's or the 80's a drug company purchased it to see if it could help protect against some of the collateral damage of radiation treatments. The way it works is they inject it into each shoulder 15 minutes before each treatment. I will be having 35 treatments so that will mean 70 shots. And of course a side effect is nausea so the prescribed a nausea medicine to go with it. It will mean quite a few more shots than I would like and yet another thing that can cause nausea but to help protect against long term damage I am willing to give it a try.
Monday, October 22, 2007
Radiation Treatment - Where Star Trek Meets Hannibal Lecter
The cornor stone treatment for this type of cancer is radiation. Actually it wasn't that long ago this was the primary treatment. Now its combined with chemotherapy during and after the treatment. The idea is to have the radiation take out the known identifiable tumors while the chemotherapy works on the tumors but also works on any stray cancer cells that might be floating around.
The radiation I will be getting is called Intensity Modulated Radiotherapy. iMRT for short. This differs from the older style radiation therapy in that it allows them to "shape" the radiation beams to more effectively treat the tumors while reducing the collateral damage. An explanation of the treatment can be found here. http://www.wakeoncology.com/Services/IntensityModulatedRadiotherapyIMRT/tabid/107/Default.aspx
In order to keep this precision my head will need to be kept stationary in the same position relative to the table. To do this they make a plastic mesh mask of my head. When my treatments are done I get to take it home as a souvenir. (I was thinking of getting it mounted in a frame and put on the wall.) This of course is the Hannibal Lecter part.
This is used to fix my head onto the table of the radiation machine. Here is a picture of an example of the machine. (I may sneak a picture of the actual machine tomorrow.)
And of course this is the Star Trek part. The images they use for the iMRT radiation are pretty cool. What they will do is make a mask of my head tomorrow and then use that to put me through a CT scan of my neck and head. That imaging will be used in the computer models to identify the tumors and create a treatment plan that maximizes the impact on the tumors and minimizes collateral damage. Its some heavy duty calculations and takes a few days to work up the treatment plan. Then hopefully by Friday they will have me in for a test run. Here they put me on the table an use the mask to hold my head in position. Then the computer positions the table and the machine to treat each tumor.
While this type of radiation seeks to minimize the collateral damage they can't eliminate it. With radiation it appears the side effects accumulate over time. So I won't really feel anything the first treatment by the end I will feel the side effects much more. The potential side effects are:
The radiation I will be getting is called Intensity Modulated Radiotherapy. iMRT for short. This differs from the older style radiation therapy in that it allows them to "shape" the radiation beams to more effectively treat the tumors while reducing the collateral damage. An explanation of the treatment can be found here. http://www.wakeoncology.com/Services/IntensityModulatedRadiotherapyIMRT/tabid/107/Default.aspx
In order to keep this precision my head will need to be kept stationary in the same position relative to the table. To do this they make a plastic mesh mask of my head. When my treatments are done I get to take it home as a souvenir. (I was thinking of getting it mounted in a frame and put on the wall.) This of course is the Hannibal Lecter part.This is used to fix my head onto the table of the radiation machine. Here is a picture of an example of the machine. (I may sneak a picture of the actual machine tomorrow.)
And of course this is the Star Trek part. The images they use for the iMRT radiation are pretty cool. What they will do is make a mask of my head tomorrow and then use that to put me through a CT scan of my neck and head. That imaging will be used in the computer models to identify the tumors and create a treatment plan that maximizes the impact on the tumors and minimizes collateral damage. Its some heavy duty calculations and takes a few days to work up the treatment plan. Then hopefully by Friday they will have me in for a test run. Here they put me on the table an use the mask to hold my head in position. Then the computer positions the table and the machine to treat each tumor.While this type of radiation seeks to minimize the collateral damage they can't eliminate it. With radiation it appears the side effects accumulate over time. So I won't really feel anything the first treatment by the end I will feel the side effects much more. The potential side effects are:
- Fatigue
- Dry Mouth (There are some drugs to minimize it but it can't be eliminated.)
- Sore Throat
- A Stiff Jaw
- Changes in Food taste
- Tooth Decay (Goes back to dry mouth but there are ways to combat this)
- Voice Changes
- Skin Changes something like a Sun Burn
Some of these side effects like fatigue, voice changes and skin changes really can't be combated. The sore throat is treated with pain medicine. The radiation oncologist told me he has 20 different ones including morphine. I let him know that it was pretty much assumed that since I was having radiation and chemotherapy I wasn't looking for organic or homeopathic treatment. In other words better living through chemistry. Bring on the drugs.
The dry mouth and related things are a bigger concern. Apparently saliva is a big help in preventing tooth decay. They suggested I see my dentist for some advice prior to the start of treatment and that is scheduled for tomorrow. (By the way telling the receptionist that you have cancer and need to see the dentist before treatment starts opens up all sorts of scheduling opportunities. No waiting whatsoever for an appointment!)
The other big concern is being able to eat and drink properly. The sore throat gets pretty bad towards the end and one of the keys to proper handling the treatment is eating and drinking enough. To solve this they want to put in a feeding tube in advance just in case. Of all the things that have occurred up to this point this is the only thing that has me a bit out of sorts. I will probably get it put in because it is the right thing to do but its not something I am looking forward to. I did go to an appointment with a specialist to do the prep work for this. Its just something that I need to get my head around.
That's all I have on the radiation treatment. The actual delivery of the treatment is relatively painless and easy. I am told I should be in and out of the facility in 20-30 minutes for each time. That's good seeing as I have to go 5 days a week for 7 weeks. Its not the delivery that is the issue its the cumulative side effects that start to become the problem.
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