Friday, December 19, 2003
It worked!
I sat down with Dr. L, and told him about my HS, which he had treated several times before, with disappointing results. It turns out that he had done one or two sessions, at 10-15Gy each, as is done for keloids. I explained that Radiation Man, Rad Woman, and others have done 200cGy, or 2Gy, fractionated over 20 treatments (for a total of 40Gy). He said that this was in fact a lower total effective radiation than 2x15Gy, because it is fractionated such. However, he granted that there may be other benefits to spreading it out like that.
Dr. L took a look at me, and his first question concerned whether I have Crohn's Disease. I explained that while I had not had it clinically ruled out, I didn't have any reason to think I did. He took photos with a digital camera, and then showed them to me as he told me what he wanted to do. "I want try a test area, 10x10cm. We will do the full 20 treatments, for a total of 40Gy. Then we will wait a couple of months, and if the results are good, I will treat the whole affected area." I asked him why this was, and he told me that the real thing is "an ordeal," and he would not put me through it if it didn't seem like it was going to work. It's better than nothing. Next we had to barter. Dr. L wanted to treat a square area above my tailbone, in the small of the back. Since that area has been quiet for a while, I thought that maybe it would not be a good area to test, since we may not know if it had improved or not. I suggested a very active area on one butt cheek, and he suggested we do the perineum (in between testes and rectum). Sure. Why not. I'm very anxious--let's just do this!!
I asked some basic, but critical questions:
1) Q: can we quantify future cancer risk of this dosage of electron beam, with 1cm bolus? And if so, what is it?
A: the doctor, who has done electron beam for non-cancerous skin diseases on hundreds of patients, said the risk is "Zero."
2) Q: Then why so hesitant?
A: To paraphrase him, because the treatment is a major pain in the ass.
3) Q: Since my HS is in the groin/buttock region, what is the future cancer risk to my testicles? Tail bone marrow? Lymph nodes in groin? Rectum?
A: Extremely low/ None.
4) Q: How about sterility? Should I consider making a sperm bank deposit?
A: No need.
Q: Even to placate my parents?
A: Really, no need.
[I think I will do so anyway]
So....first appointment is Jan. 6, 2004. Fingers crossed.
I sat down with Dr. L, and told him about my HS, which he had treated several times before, with disappointing results. It turns out that he had done one or two sessions, at 10-15Gy each, as is done for keloids. I explained that Radiation Man, Rad Woman, and others have done 200cGy, or 2Gy, fractionated over 20 treatments (for a total of 40Gy). He said that this was in fact a lower total effective radiation than 2x15Gy, because it is fractionated such. However, he granted that there may be other benefits to spreading it out like that.
Dr. L took a look at me, and his first question concerned whether I have Crohn's Disease. I explained that while I had not had it clinically ruled out, I didn't have any reason to think I did. He took photos with a digital camera, and then showed them to me as he told me what he wanted to do. "I want try a test area, 10x10cm. We will do the full 20 treatments, for a total of 40Gy. Then we will wait a couple of months, and if the results are good, I will treat the whole affected area." I asked him why this was, and he told me that the real thing is "an ordeal," and he would not put me through it if it didn't seem like it was going to work. It's better than nothing. Next we had to barter. Dr. L wanted to treat a square area above my tailbone, in the small of the back. Since that area has been quiet for a while, I thought that maybe it would not be a good area to test, since we may not know if it had improved or not. I suggested a very active area on one butt cheek, and he suggested we do the perineum (in between testes and rectum). Sure. Why not. I'm very anxious--let's just do this!!
I asked some basic, but critical questions:
1) Q: can we quantify future cancer risk of this dosage of electron beam, with 1cm bolus? And if so, what is it?
A: the doctor, who has done electron beam for non-cancerous skin diseases on hundreds of patients, said the risk is "Zero."
2) Q: Then why so hesitant?
A: To paraphrase him, because the treatment is a major pain in the ass.
3) Q: Since my HS is in the groin/buttock region, what is the future cancer risk to my testicles? Tail bone marrow? Lymph nodes in groin? Rectum?
A: Extremely low/ None.
4) Q: How about sterility? Should I consider making a sperm bank deposit?
A: No need.
Q: Even to placate my parents?
A: Really, no need.
[I think I will do so anyway]
So....first appointment is Jan. 6, 2004. Fingers crossed.
Friday, December 12, 2003
Hi there.
So I've started this blog, as an easier way to get everybody in the different Hidradenitis groups to follow my radiation treatment (if that happens--we'll see).
A little about me: I'm 25 years old, of normal weight, a very healthy eater, and have no other health problems. I was a first-year law student until a few weeks ago, when my HS got bad enough that I really could not keep simultaneously fighting it and what some people consider to be "the most challenging curriculum in higher education." Whatever--law school's really not that bad. I mean, I almost made it through a semester, having read every word of every assignment, while being beseiged daily by this disease. Over the semester, I spent more time at Health Services than I did in class for any one of my subjects. I spent hours in the morning and night tending to my angry skin.
Today I made an appointment with Dr. L, a radiation oncologist. It's for next Weds., and I'm quite excited. Over the phone, I told him, simply, that he could change my life. It worked as far as getting an appointment. I hope I can convince him to give me a try.
So I've started this blog, as an easier way to get everybody in the different Hidradenitis groups to follow my radiation treatment (if that happens--we'll see).
A little about me: I'm 25 years old, of normal weight, a very healthy eater, and have no other health problems. I was a first-year law student until a few weeks ago, when my HS got bad enough that I really could not keep simultaneously fighting it and what some people consider to be "the most challenging curriculum in higher education." Whatever--law school's really not that bad. I mean, I almost made it through a semester, having read every word of every assignment, while being beseiged daily by this disease. Over the semester, I spent more time at Health Services than I did in class for any one of my subjects. I spent hours in the morning and night tending to my angry skin.
Today I made an appointment with Dr. L, a radiation oncologist. It's for next Weds., and I'm quite excited. Over the phone, I told him, simply, that he could change my life. It worked as far as getting an appointment. I hope I can convince him to give me a try.
