Today was supposed to be chemo treatment number 3. I was scheduled to be at the hospital for this chemo treatment and Sue dropped me off right at 8:00. Being at the hospital is much more convenient with radiation treatment and the WIFI access that they have.
I got checked in and the first thing they do is start an IV with fluids. They also draw blood to check your cell counts. They got the IV in, took the blood sample and started the fluids. The reason for the fluids is that you need to urinate a certain amount before you get the main chemo drug. A bit before 10:00 I went over to radiation and got my treatment. BTW the new treatment plan only takes about 10 minutes. Hopefully with the smaller number of fields and smaller field sizes some of the side effects will be mitigated. Also now there are only 6 radiation treatments left!!! :-)
After radiation I got back to the chemo room and and it was time for a feeding so I started on that. That was when the nurse came over and said that my blood count, in particular my white blood cells, had dropped to a level that meant I had Neutropenia. They had to put a call into the medical oncologist to see how they wanted to proceed. There is a drug that they can give you to up the white blood cell count but unfortunately they can't give it to you while you are under going radiation treatment. :-(. To make a long story short they decided to cancel the chemo treatment for today. The concern was that this next round of chemo would drop my white blood cell count through the floor. I am already susceptible to infection and this would have made that much worse. The plan now is to try again for the third chemo treatment on Monday. They seem to feel that my white blood cell count should recover enough by then.
This is a disappointing set back. Its not that I am looking forward to chemo but there I was all hooked up and ready to go. On the other hand it is better to be cautious. They reminded me again today that this particular treatment plan with 35 radiation treatments and the 3 strong chemo treatments is one of the rougher ones available. The key is being able to complete it in one piece.
So what is Neutropenia? It is defined by having a white blood cell count of less than 1,000 per mm. The normal count is 4,000 - 11,000. It means that it is easier to get an infection and harder to fight them off. They key is to be vigilant in trying to prevent infections. Also be aware of any signs of infections. This includes things like fever, chills or night sweats. To help prevent infections there is a long list of foods to avoid. Not a problem as everything I intake now is done through the canned nutrition provided for the PEG tube. (I knew that tube would come in handy.) Also avoid groups of people, avoid public places and anyone that is sick. They also gave me some of those surgical masks to wear if I do end up having to go out at all.
The only real effect that I am feeling from the reduced blood counts is due to the drop in red blood cells. I tend to be tired more often and need to take naps during the day. Fortunately the radiation treatments will be completed by a week from Wednesday and more options should open up. Also the daily collateral damage that comes from radiation treatments will be over and I can start recovering from those side effects.
Tuesday, December 11, 2007
Sunday, December 9, 2007
Retargeting The Air Campaign: 8 More To Go
Only 8 more radiation treatments to go. This is typically the point where the cumulative effects of the radiation really start to build. Right now we have the pain medication dialed in but the dry mouth / mucus is still a big problem along with the damage to the skin. Today I started using a prescription skin treatment and hopefully that will make it a bit more bearable.
There is new information from the front lines. A week ago they did another CT Scan on my to check the progress and adjust the radiation treatment plan. For the first 27 treatments the machine would take 7 different positions around my head and I would get treated with 2 "fields" from each angle. A field is a treatment area. The head of the machine has these fingers that adjust to form different shapes for the radiation beams. When treating an area these fingers will move during the treatment adjusting how much radiation goes into a specific area in the field. This is what helps them focus the radiation on where it needs to be and help reduce the collateral damage. For the first part of the treatment plan I was essentially getting zapped 14 times per treatment.
Starting next week based on the new CT Scan they will be treating 8 different fields. I think the fields should also be smaller. This means that I should be getting less radiation overall than I did during the first part of the treatment plan and at the same time focusing the radiation on where it needs to be. One of the things that can change during treatment is the positioning of some of the tumors. This can be due to the weight loss and the tumors shrinking. Fortunately the radiation oncologist I am seeing does adjust the plan during treatment. Not all radiation oncologists do this.
On Friday I asked the radiation oncologist if he could show me the CT Scans. Up to this point I had never seen them. He wheeled in a notebook stand and went over a side by side comparison of the scan before treatment started and the one used to adjust the treatment plan. Looking at the CT Scans was very interesting and the doctor took all the time needed to answer my questions. The first thing that surprised me was that the scans were black and white. I didn't know what I expected but based on being given IV dye contrast I thought the tumors would just jump out at you in color on the screen. Instead what they do is look for abnormalities in each slice. (For those of you that don't know a CT scan is a group of images that are essentially horizontal slices. In this case its like they took successive slices starting at the top of my head.)
One of the things they look for in the CT Scan are masses that are not symmetrical, that is things that are on one side of the neck but not the other. The also look for masses that appear on only a few slices but not others. It really comes down to the doctors having quite a bit of knowledge in the anatomy of the head and neck and being able to identify what should be there and what shouldn't be there.
On the notebook screen he was able to bring up both CT Scans side by side and scroll through the slices in unison. The mass in the nasalpharyngeal region was pretty much all gone. There was a bit something there that they were not sure if it was tumor, scar tissue or mucus. Just be sure they are going to treat that area. The larger tumors in my neck were significantly reduced. It was very interesting to be able to see the before and after images and I was glad that the doctor took the time to go over them with me.
I also wanted to give an update on the PEG tube. It has been a few weeks since I joined the collective and I think I have finally gotten the hang of the PEG tube. Using the tube isn't difficult at all. Basically there is a plug on the end of the tube that you open up and clean with an alcohol wipe. Then there is a large plastic syringe that fits into the tube. From there you just pour in what you need to put in the tube. Before you start you need to run 30 CC of water through the tube just to clear it out and at the end you do the same.
The trick to using the tube is scheduling. The goal is to have 7 to 8 cups of a canned product that is similar to ensure a day along with 5 to 6 cups of water. At the same time I need to put the medication in through the tube. Some medication is once a day, 3 times a day or every 4 hours. Right now I am on 4 different medications that go through the tube. When chemo starts that goes up to 5 for a few days. At first I would try to coordinate the feedings and medication so that I would have to use the tube as little as possible. I also learned that if you have 2 cups of food in through the tube it is a good idea to stay seated for awhile. It took me a week or so to figure that one out. :-)
Part of trying to coordinate everything so I would have to use the tube as little as possible was a reaction to my lack of enthusiasm for the tube. What I didn't realize was that this was actually making it harder for me. What would happen is that if I was not hitting my water goal I may try to sneak in an extra cup of water along with 2 cups of food and medication. To put it delicately your stomach can only take so much volume at once and that did cause problems. There is nothing more depressing than throwing up your pain medication knowing you can't take more for a few hours. :-(
After a week or 2 I started to become more comfortable using the tube and separated out feeding, medication and hydration. While this requires me to use the tube more during the day it also makes it much more comfortable for me. For example this morning I actually was able to sleep in a bit so when I got up I had 2 cups of food and two medications but no water other than the minimum. I had to sit still for a half hour just to allow things to adjust but then I was fine. An hour later I had a cup of water. That took all of 5 minutes to administer and a sat still for around 10 minutes. Yesterday for example I was able to take in all of the food, water and medication that was required by using the tube 9 times. Several of those times were just for medication. When I just do medication I am able to get up and get moving with no problems at all.
On tap for this week is the revised radiation treatment plan and chemo number 3 on Tuesday. While I am not looking forward to chemo therapy I have noticed that the tumors shrink more in the days following chemo. Hopefully between the next chemo treatment and the last 8 radiation treatments the tumors will be completely annihilated.
There is new information from the front lines. A week ago they did another CT Scan on my to check the progress and adjust the radiation treatment plan. For the first 27 treatments the machine would take 7 different positions around my head and I would get treated with 2 "fields" from each angle. A field is a treatment area. The head of the machine has these fingers that adjust to form different shapes for the radiation beams. When treating an area these fingers will move during the treatment adjusting how much radiation goes into a specific area in the field. This is what helps them focus the radiation on where it needs to be and help reduce the collateral damage. For the first part of the treatment plan I was essentially getting zapped 14 times per treatment.
Starting next week based on the new CT Scan they will be treating 8 different fields. I think the fields should also be smaller. This means that I should be getting less radiation overall than I did during the first part of the treatment plan and at the same time focusing the radiation on where it needs to be. One of the things that can change during treatment is the positioning of some of the tumors. This can be due to the weight loss and the tumors shrinking. Fortunately the radiation oncologist I am seeing does adjust the plan during treatment. Not all radiation oncologists do this.
On Friday I asked the radiation oncologist if he could show me the CT Scans. Up to this point I had never seen them. He wheeled in a notebook stand and went over a side by side comparison of the scan before treatment started and the one used to adjust the treatment plan. Looking at the CT Scans was very interesting and the doctor took all the time needed to answer my questions. The first thing that surprised me was that the scans were black and white. I didn't know what I expected but based on being given IV dye contrast I thought the tumors would just jump out at you in color on the screen. Instead what they do is look for abnormalities in each slice. (For those of you that don't know a CT scan is a group of images that are essentially horizontal slices. In this case its like they took successive slices starting at the top of my head.)
One of the things they look for in the CT Scan are masses that are not symmetrical, that is things that are on one side of the neck but not the other. The also look for masses that appear on only a few slices but not others. It really comes down to the doctors having quite a bit of knowledge in the anatomy of the head and neck and being able to identify what should be there and what shouldn't be there.
On the notebook screen he was able to bring up both CT Scans side by side and scroll through the slices in unison. The mass in the nasalpharyngeal region was pretty much all gone. There was a bit something there that they were not sure if it was tumor, scar tissue or mucus. Just be sure they are going to treat that area. The larger tumors in my neck were significantly reduced. It was very interesting to be able to see the before and after images and I was glad that the doctor took the time to go over them with me.
I also wanted to give an update on the PEG tube. It has been a few weeks since I joined the collective and I think I have finally gotten the hang of the PEG tube. Using the tube isn't difficult at all. Basically there is a plug on the end of the tube that you open up and clean with an alcohol wipe. Then there is a large plastic syringe that fits into the tube. From there you just pour in what you need to put in the tube. Before you start you need to run 30 CC of water through the tube just to clear it out and at the end you do the same.
The trick to using the tube is scheduling. The goal is to have 7 to 8 cups of a canned product that is similar to ensure a day along with 5 to 6 cups of water. At the same time I need to put the medication in through the tube. Some medication is once a day, 3 times a day or every 4 hours. Right now I am on 4 different medications that go through the tube. When chemo starts that goes up to 5 for a few days. At first I would try to coordinate the feedings and medication so that I would have to use the tube as little as possible. I also learned that if you have 2 cups of food in through the tube it is a good idea to stay seated for awhile. It took me a week or so to figure that one out. :-)
Part of trying to coordinate everything so I would have to use the tube as little as possible was a reaction to my lack of enthusiasm for the tube. What I didn't realize was that this was actually making it harder for me. What would happen is that if I was not hitting my water goal I may try to sneak in an extra cup of water along with 2 cups of food and medication. To put it delicately your stomach can only take so much volume at once and that did cause problems. There is nothing more depressing than throwing up your pain medication knowing you can't take more for a few hours. :-(
After a week or 2 I started to become more comfortable using the tube and separated out feeding, medication and hydration. While this requires me to use the tube more during the day it also makes it much more comfortable for me. For example this morning I actually was able to sleep in a bit so when I got up I had 2 cups of food and two medications but no water other than the minimum. I had to sit still for a half hour just to allow things to adjust but then I was fine. An hour later I had a cup of water. That took all of 5 minutes to administer and a sat still for around 10 minutes. Yesterday for example I was able to take in all of the food, water and medication that was required by using the tube 9 times. Several of those times were just for medication. When I just do medication I am able to get up and get moving with no problems at all.
On tap for this week is the revised radiation treatment plan and chemo number 3 on Tuesday. While I am not looking forward to chemo therapy I have noticed that the tumors shrink more in the days following chemo. Hopefully between the next chemo treatment and the last 8 radiation treatments the tumors will be completely annihilated.
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