Just a quick update. I have talked to my oncologist and a radiation oncologist, and have decided to go for the radiation and chemo treatment, followed by another surgery.
Barring a miracle, this is really my only shot to beat this once and for all.
I go in for a planning session on Dec 1st. I'll get a CT scan, sans contrast (yippee), and tattooed where I am going to get hit with the radiation.
The treatments will be 5 days a week, for 5 weeks. As we are going to OR for a week to see my family during the Christmas holidays, I won't be able to start the radiation until we get back. So my first day of radiation will be Jan 5th (the doctor who will be doing the radiation does not work on Mondays). This means I should be finished the first week of Feb.
I will also be taking Xeloda, an oral form of 5FU chemo. I have taken this before and it is fairly tolerable. This time I will only be taking it the days I get radiation, so that might make it a bit easier. Other times I took it for 2 weeks straight, then had a week off. Oh, and this time I will also be taking a lower dose.
I am hoping that 6 to 7 weeks after the radiation, providing it did what we are hoping it does, I will go in for what we are praying will be my 5th and last surgery to remove the tumors.
One thing I learned from watching movies made in the 50s and 60s, is that getting hit with radiation can make you bigger and stronger. I'm hoping that's the case with me. :-)
As things proceed, we'll keep you updated.
Kevin The Roentgenizer
Saturday, November 21, 2009
Thursday, November 05, 2009
I'm tired of being 1 in a Million
So it's not enough that I have to have a rare form of cancer, but I also have to have a case that does not act like it should. Part of that is good, part of that isn't.
Here's the deal. I have three tumors that were not able to be removed during my surgery in July. Two small ones are near the liver, but Dr. Loggie says they are in such a tight place that they have practically "painted themselves into a corner". He doesn't seem concerned about them -- they haven't changed in the two years we've been watching them -- and he thinks they will just sit there and stagnate.
The other tumor is in the mesentary, near the bowels on one side and aorta (blood supply to the stomach) on the other. During the surgery, Dr. Loggie saw it, but did not feel he could safely remove it. This is the one he is concerned about. It is growing, and left untreated, it could possibly cause an intestinal blockage or restrict the blood flow to the stomach.
During my consultation on Nov 4th, Dr. Loggie discussed an option that I have never heard being made by a PMP specialist. Radiation. Radiation is never used to treat PMP because the cancer is mucinous, and dispersed throughout the abdominal area. Using radiation to treat that is not very effective at all.
So why would Dr. Loggie suggest radiation if it is never used? For one thing, we know from the many CT scans I have had over the past couple of years, and from his observation, that this one tumor is localized. The problem is that it is growing little "fingers" at the outside edges that are reaching towards the aorta and bowel. This is one reason that Dr. Loggie was not able to remove it before. He felt certain that he could not get the "fingers" out as the margins around them are very narrow and too close to vital organs/blood supply. But no one has ever successfully -- to his knowledge -- used radiation on PMP, but he thinks that in my case, the radiation (along with chemo) could shrink the tumor and "amputate" the "fingers" enough to make the tumor operable.
Yes, that means another surgery. :-(
Since this is a treatment that is not used for PMP, Dr. Loggie was hesitant to say this is what "should" be done, but instead said it was something that could be tried. He said he usually prefers to give patients a recommendation rather than a "menu" of options, but this time, he is outlining the choices without a strong recommendation. Partly because while surgery could remove the threat this tumor poses, it could create other problems.
Here are the choices.
1) Do nothing / watch and wait. The good thing about this option is that right now I am feeling pretty good, and do not have any symptoms. The bad thing about this option is that if I get to the stage where the tumor becomes a problem, there is a good chance that nothing else could be done at that point. And there is no way to project rate of growth/timing of the tumor.
2) Radiation and Chemo, with another surgery following. The good thing about this option is that we are being proactive in attacking this tumor, with a better possibility of actually getting it removed. The bad thing is having to go through radiation, chemo, and yet another surgery. And of course there is the risk that comes with surgery. Since the tumor is close to a blood vessel, there is a chance of nicking that. There is also a chance of nicking bowel, which could also cause big problems. There is also a risk of problems from additional scar tissue and a chance that surgery could actually disseminate the currently localized disease.
The treatment would consist of 5 weeks of radiation. Mon thru Friday for about 20 mins a day. The chemo would be Xeloda, which I have taken before and is taken orally as pills. I have been told that there probably won't be many side effects, but we really won't know until I start the treatment.
3) There is also the possibility of doing chemo and radiation without the surgery, but that would probably just put off the inevitable.
Right now I am leaning towards the 2nd option. I hate the idea of yet another surgery and following recovery, but I know I can do it. I also don't want to do nothing, and then a couple years down the road get to the point where nothing can be done, and regret not having taken action.
It's not an easy decision to make, as there are a lot of risks involved. But I guess with cancer, there are risks with any treatment. You just have to pray that the path you take is the right one for you.
Your prayers for guidance and wisdom are greatly appreciated.
Kevin
Here's the deal. I have three tumors that were not able to be removed during my surgery in July. Two small ones are near the liver, but Dr. Loggie says they are in such a tight place that they have practically "painted themselves into a corner". He doesn't seem concerned about them -- they haven't changed in the two years we've been watching them -- and he thinks they will just sit there and stagnate.
The other tumor is in the mesentary, near the bowels on one side and aorta (blood supply to the stomach) on the other. During the surgery, Dr. Loggie saw it, but did not feel he could safely remove it. This is the one he is concerned about. It is growing, and left untreated, it could possibly cause an intestinal blockage or restrict the blood flow to the stomach.
During my consultation on Nov 4th, Dr. Loggie discussed an option that I have never heard being made by a PMP specialist. Radiation. Radiation is never used to treat PMP because the cancer is mucinous, and dispersed throughout the abdominal area. Using radiation to treat that is not very effective at all.
So why would Dr. Loggie suggest radiation if it is never used? For one thing, we know from the many CT scans I have had over the past couple of years, and from his observation, that this one tumor is localized. The problem is that it is growing little "fingers" at the outside edges that are reaching towards the aorta and bowel. This is one reason that Dr. Loggie was not able to remove it before. He felt certain that he could not get the "fingers" out as the margins around them are very narrow and too close to vital organs/blood supply. But no one has ever successfully -- to his knowledge -- used radiation on PMP, but he thinks that in my case, the radiation (along with chemo) could shrink the tumor and "amputate" the "fingers" enough to make the tumor operable.
Yes, that means another surgery. :-(
Since this is a treatment that is not used for PMP, Dr. Loggie was hesitant to say this is what "should" be done, but instead said it was something that could be tried. He said he usually prefers to give patients a recommendation rather than a "menu" of options, but this time, he is outlining the choices without a strong recommendation. Partly because while surgery could remove the threat this tumor poses, it could create other problems.
Here are the choices.
1) Do nothing / watch and wait. The good thing about this option is that right now I am feeling pretty good, and do not have any symptoms. The bad thing about this option is that if I get to the stage where the tumor becomes a problem, there is a good chance that nothing else could be done at that point. And there is no way to project rate of growth/timing of the tumor.
2) Radiation and Chemo, with another surgery following. The good thing about this option is that we are being proactive in attacking this tumor, with a better possibility of actually getting it removed. The bad thing is having to go through radiation, chemo, and yet another surgery. And of course there is the risk that comes with surgery. Since the tumor is close to a blood vessel, there is a chance of nicking that. There is also a chance of nicking bowel, which could also cause big problems. There is also a risk of problems from additional scar tissue and a chance that surgery could actually disseminate the currently localized disease.
The treatment would consist of 5 weeks of radiation. Mon thru Friday for about 20 mins a day. The chemo would be Xeloda, which I have taken before and is taken orally as pills. I have been told that there probably won't be many side effects, but we really won't know until I start the treatment.
3) There is also the possibility of doing chemo and radiation without the surgery, but that would probably just put off the inevitable.
Right now I am leaning towards the 2nd option. I hate the idea of yet another surgery and following recovery, but I know I can do it. I also don't want to do nothing, and then a couple years down the road get to the point where nothing can be done, and regret not having taken action.
It's not an easy decision to make, as there are a lot of risks involved. But I guess with cancer, there are risks with any treatment. You just have to pray that the path you take is the right one for you.
Your prayers for guidance and wisdom are greatly appreciated.
Kevin
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