You can stop tapping your feet

I know I should have written yesterday, but the market has been a little crazy lately and I've been busier at the office . Thanks to all who wrote me essentially to say, "Post to your blog, girl! We're waiting on you!"

Dr. K called me yesterday afternoon and it boils down to this:

(1) It never occurred to her that the tenderness on my scalp could be a bone met. I'm now okay with this, as the more I've read, the more I've learned that bone mets are very rare in LMS. She should have followed up, though, and I should have spoken up when the tenderness didn't pass after several months. Lesson learned on both sides and enough written on this issue.

(2) She is very concerned by the radiologist's opinion that a met in my skull is taking over the bone marrow and this is what she wants to go after, if possible. She still hasn't seen the scans on CD (turns out it's a computer glitch at the imaging center) but her assistant is working on getting them. Therefore, we still have no final count of how many or how big. That's also why we still have no response on whether the lesion in the ilium has grown since my last scan. I do plan to get that answer once they receive the CD.

(3) We are starting treatment with Doxil next Friday, September 26 around 10 a.m. I will have the first infusion at MSKCC because 20% of patients experience a severe allergic reaction to this medication and we agreed that MSKCC would be the best place to be if that happened. I have no allergies, so I expect to be in that 80%. If I have a reaction, she will terminate the infusion immediately and the next treatment would be AIM (Adriamycin [doxorubicin] and Ifex [ifosfamide] and Mesna [a urinary tract protector for use with Ifex]). Doxil is actually an incapsulated form of Adriamycin and mimics a fat cell when it enters the body. If my body sees it as another of my fat cells, no reaction. If it sees it as a foreign fat cell, allergic reaction. There is more information on Doxil and AIM here, although it may be a little dated: http://www.leiomyosarcoma.info/chemo01menu.htm

(4) I will have a 15-minute infusion of Zometa at each treatment (Doxil is given once every three to four weeks). Zometa is one of the biphosphonates I wrote about the other day. These drugs interfere with the way bone is destroyed and rebuilt, and are usually prescribed for women who are in danger of developing or have osteoporosis.

(5) Once I have cleared my first infusion, I will go back to New Jersey to have the treatments. That way I can stay in-network and continue to pay $20 per treatment.

(6) After two to three months, I will have my usual chest/abdomen/pelvis CT scans plus a skull MRI to check for results. Unfortunately, she told me that bone mets are very difficult to evaluate for response to chemo (which may be why I've read that chemo doesn't affect bone mets). However, the Zometa may help in this area and stop -- if not reverse -- the growth of the bone mets.

(7) When I see her on the 26th, I will ask what the next step would be if there is no response from Doxil: AIM or the clinical trial for a new drug that she is overseeing at MSKCC. Participants in the trial must have no response or growth on doxorubicin in order to enter it.

So that's where we are. I know that this is a serious situation, but since I feel the same (other than the continued tenderness on my scalp), it's difficult to grasp. I keep replaying in my head one of the famous scenes from 1975's "Monty Python and The Holy Grail." The entire movie is a typically insane piece of Monty Python work, and I believe you have to have a very strange and dry sense of humor to appreciate it (which apparently I do). However, hoping that I won't be fined for violating any copyright laws and hoping even more than you will find the humor (albeit sick) in this, here are the lines from that scene:

The Dead Collector: Bring out yer dead. [a man puts a body on the cart]
Large Man with Dead Body: Here's one.
The Dead Collector: That'll be ninepence.
The Dead Body That Claims It Isn't: I'm not dead.
The Dead Collector: What?
Large Man with Dead Body: Nothing. There's your ninepence.
The Dead Body That Claims It Isn't: I'm not dead.
The Dead Collector: 'Ere, he says he's not dead.
Large Man with Dead Body: Yes he is.
The Dead Body That Claims It Isn't: I'm not.
The Dead Collector: He isn't.
Large Man with Dead Body: Well, he will be soon, he's very ill.
The Dead Body That Claims It Isn't: I'm getting better.
Large Man with Dead Body: No you're not, you'll be stone dead in a moment.
The Dead Collector: Well, I can't take him like that. It's against regulations.
The Dead Body That Claims It Isn't: I don't want to go on the cart.
Large Man with Dead Body: Oh, don't be such a baby.
The Dead Collector: I can't take him.
The Dead Body That Claims It Isn't: I feel fine.
Large Man with Dead Body: Oh, do me a favor.
The Dead Collector: I can't.
Large Man with Dead Body: Well, can you hang around for a couple of minutes? He won't be long.
The Dead Collector: I promised I'd be at the Robinsons'. They've lost nine today.
Large Man with Dead Body: Well, when's your next round?
The Dead Collector: Thursday.
The Dead Body That Claims It Isn't: I think I'll go for a walk.
Large Man with Dead Body: You're not fooling anyone, you know. Isn't there anything you could do?
The Dead Body That Claims It Isn't: I feel happy. I feel happy.
[the Dead Collector glances up and down the street furtively, then silences the Body with a whack of his club]
Large Man with Dead Body: Ah, thank you very much.
The Dead Collector: Not at all. See you on Thursday.
Large Man with Dead Body: Right.