Except for one five-minute period of weirdness, I made it through my Doxil treatment. They start off with an infusion of Benadryl and then start the Doxil at a very slow drip while the chemo nurse (in this case, one of my favorites, Bridget) watches for a reaction. Everything was going along fine and she had bumped the rate up twice. Dr. K stopped by to see how I was doing and I had a bunch of questions to ask, which I managed to get answered before I needed to visit the restroom. I was feeling as if I were filling up with gas. Having nothing happen during my visit, I then felt like I was having menstrual cramps. Bridget paused the infusion and I was given a hot pack, which I placed on my abdomen. Within minutes, I felt fine and encourage Bridget to turn the pump back on, but she had placed a call to Dr. K (who disappeared as I headed for the restroom). About five minutes later, having the all clear from Dr. K, the infusion was re-started and I finished without incident. We don't know what the problem was, maybe a combination of the sandwich I ate just before treatment started plus the Coke I drank (I usually don't drink soda). No one thought it was the Doxil, since it was at least halfway through the treatment. I feel fine today except for being tired and a little flushed, which is normal.
I was surprised to have a message on the answering machine when we got in that I'm scheduled for my next treatment at MSKCC on October 17. It was our understanding that Dr. K was going to speak with the oncologist in New Jersey and set me up to have the rest of my treatments there, plus the Zometa infusions. She said she e-mailed Dr. Greenberg but hadn't heard back. I'll have to call on Monday to see if my little incident led her to change her mind or if there was a miscommunication between her and her back office.
I currently have an appointment with the other radiation oncologist on October 7, but Dr. K didn't know anything about it. She's going to speak with the first doctor I saw to find out about this referral and get back to me. I'm happy for her to look into that, because she needs to be the quarterback and oversee all the plays. I'll let you know what happens. I also reminded her about consulting with an ENT about this ongoing cough. Gotta keep on top of things!!
My plans for the weekend are just to relax and get rest. It can take up to two weeks for my blood counts to be affected by the treatment, so we'll keep an eye on my temperature as well as any strange feelings or aches. It looks like I'll be scheduled for treatment every three weeks until she decides it's time to scan again, which will be in two to three months.
Thanks for all the e-mails and comments of encouragement. I could feel a lot of positive energy flowing my way yesterday and I was so pleased last evening that I was going to be able to report a good outcome. :)
Saturday, September 27, 2008
Thursday, September 25, 2008
Doxil
Tomorrow is Doxil day. Keep your fingers crossed that it goes well. I'll report in as soon as I feel up to it.
Bon voyage to Steve and Kate who are off on another adventure at sea. We're all jealous but hope you have a fabulous time!
Bon voyage to Steve and Kate who are off on another adventure at sea. We're all jealous but hope you have a fabulous time!
Tuesday, September 23, 2008
Happy autumn!
It's hard to believe that summer is now officially over, but welcome autumn! My two favorite seasons have always been spring and autumn, so despite the fact that I'll miss looking out at and being in the pool (we closed it yesterday), I'm happy to feel the chill in the air.
We received a call on Friday afternoon from the radiation oncologist's resident that one of the specialty radiation oncologists would like to see me. He performs IGRT -- image-guided radiation therapy -- which uses CT and MRI images to map a tumor in three dimensions, resulting in a more targeted treatment and less damage to surrounding tissue. That doctor is away for the week, but we will arrange to meet with him in the near future.
In the meantime, my first treatment with Doxil is confirmed for Friday, September 26. I've really enjoyed the five-plus weeks I've been off chemo, even though I knew I would be back to it eventually. The Gemcitabine caused problems -- although they were minor, they interrupted my life. At least we had gotten a handle on the related nausea. I guess we'll have to see what I need to take along with the Doxil.
I'm enjoying working from home again and have already cleaned up my "office" space, which was quite a mess. In my spare time, I've been printing photos from our recent trip and getting photos out to our friends. I've even been riding the exercise bike! One of these days I'm going to get the DVD of our Europe trip done, but that requires a chunk of time. Maybe one of these weekends...
We received a call on Friday afternoon from the radiation oncologist's resident that one of the specialty radiation oncologists would like to see me. He performs IGRT -- image-guided radiation therapy -- which uses CT and MRI images to map a tumor in three dimensions, resulting in a more targeted treatment and less damage to surrounding tissue. That doctor is away for the week, but we will arrange to meet with him in the near future.
In the meantime, my first treatment with Doxil is confirmed for Friday, September 26. I've really enjoyed the five-plus weeks I've been off chemo, even though I knew I would be back to it eventually. The Gemcitabine caused problems -- although they were minor, they interrupted my life. At least we had gotten a handle on the related nausea. I guess we'll have to see what I need to take along with the Doxil.
I'm enjoying working from home again and have already cleaned up my "office" space, which was quite a mess. In my spare time, I've been printing photos from our recent trip and getting photos out to our friends. I've even been riding the exercise bike! One of these days I'm going to get the DVD of our Europe trip done, but that requires a chunk of time. Maybe one of these weekends...
Friday, September 19, 2008
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.
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.
Tuesday, September 16, 2008
What we learned today...
We had a long meeting with the radiation oncologist, who spent more time with us than I think he intended to but didn't rush us along. Unfortunately, the day I had my MRIs done was the day the imaging center changed computer systems, and they are having some difficulties getting the films onto CD, which is what MSKCC uses to get them into the main computer system so all the doctors have access to them. Therefore, this doctor hasn't seen the "real" films either, only fuzzy copies of them.
Basically, he told us I have multiple mets in my skull -- at least two, but he's unsure exactly how many or where they are since he hasn't seen the films. The one of most concern is the one in the clivus, which is located about in the center of my head. According to the radiology report, the met in that bone is spreading forward into the frontal bone in the area probably behind my nose somewhere. If you look at the skull diagram from my recent post, you'll see that the frontal bone starts at the forehead and extends all the way down the face behind your nose and wraps around under your cheeks. The clivus is back in there where the frontal bone meets.
Because of these multiple mets (plus the likely one in my ilium) and the fact that none of them are causing me pain, his inclination is to watch and wait (which is what Dr. Healey recommended). He will recommend to Dr. K that chemo be resumed but that she might try a different medication. I'm not sure why she would do that since bone mets cannot be treated with chemo, but I'll discuss that with her when she calls me, likely tomorrow.
I've been reading about biphosphonates, which are medications sometimes given in addition to chemo to prevent or stabilize bone mets. The most commonly known one in LMS circles is Zometa, but the Sally Fields-advertised Boniva is a biophosponate. It works to prevent the destruction of bone, and cancer cells definitely destroy bone. The rare but serious side effect to these biphosponates is the deterioration of the jaw bone. Why she didn't suggest this when she started me on chemo I simply do not know. Another question to ask.
So, no surgery because there are too many bone mets. No radiation because there are too many bone mets. We'll find out tomorrow about chemo suggestions, and then I'll have to confirm that MRIs will be done on my skull every two to three months following a round of chemo. If and when there is a change in one of the mets or I begin having problems, we will revisit the surgery or radiation options.
For those of you who are familiar with my annoying, constant cough, it's possible that the met in the clivus is affecting my sinus and causing the post-nasal drip, which makes me cough. The radiation oncologist suggested that I see the ENT person at MSKCC to see if there is any problem within the sinus. I'll ask Dr. K about that referral.
It is our humble opinion that both Dr. Healey and Dr. K definitely dropped the ball here -- although I must take some of the blame. Two areas in which I have mets are places I mentioned as tender or sore, and I've been complaining about this post-nasal drip/cough since last October. I should have pushed for tests, but as cancer specialists at what is supposed to be the best cancer center in the world, you would think they would have been vigilant for bone mets since I was a rare bone primary. I should have had a bone scan no longer than a year out from my last one, which would have put it at November 2007 -- about a month after my scalp became tender. At that point, we may have only one or two to deal with and therefore had more options.
This experience really leads me to question any doctor, even the so-called "experts." Don't let what has happened here happen to you: Question everything and speak up when you think something is slipping through the cracks. I wish I had.
I'll be back after my discussion about chemo with Dr. K.
Basically, he told us I have multiple mets in my skull -- at least two, but he's unsure exactly how many or where they are since he hasn't seen the films. The one of most concern is the one in the clivus, which is located about in the center of my head. According to the radiology report, the met in that bone is spreading forward into the frontal bone in the area probably behind my nose somewhere. If you look at the skull diagram from my recent post, you'll see that the frontal bone starts at the forehead and extends all the way down the face behind your nose and wraps around under your cheeks. The clivus is back in there where the frontal bone meets.
Because of these multiple mets (plus the likely one in my ilium) and the fact that none of them are causing me pain, his inclination is to watch and wait (which is what Dr. Healey recommended). He will recommend to Dr. K that chemo be resumed but that she might try a different medication. I'm not sure why she would do that since bone mets cannot be treated with chemo, but I'll discuss that with her when she calls me, likely tomorrow.
I've been reading about biphosphonates, which are medications sometimes given in addition to chemo to prevent or stabilize bone mets. The most commonly known one in LMS circles is Zometa, but the Sally Fields-advertised Boniva is a biophosponate. It works to prevent the destruction of bone, and cancer cells definitely destroy bone. The rare but serious side effect to these biphosponates is the deterioration of the jaw bone. Why she didn't suggest this when she started me on chemo I simply do not know. Another question to ask.
So, no surgery because there are too many bone mets. No radiation because there are too many bone mets. We'll find out tomorrow about chemo suggestions, and then I'll have to confirm that MRIs will be done on my skull every two to three months following a round of chemo. If and when there is a change in one of the mets or I begin having problems, we will revisit the surgery or radiation options.
For those of you who are familiar with my annoying, constant cough, it's possible that the met in the clivus is affecting my sinus and causing the post-nasal drip, which makes me cough. The radiation oncologist suggested that I see the ENT person at MSKCC to see if there is any problem within the sinus. I'll ask Dr. K about that referral.
It is our humble opinion that both Dr. Healey and Dr. K definitely dropped the ball here -- although I must take some of the blame. Two areas in which I have mets are places I mentioned as tender or sore, and I've been complaining about this post-nasal drip/cough since last October. I should have pushed for tests, but as cancer specialists at what is supposed to be the best cancer center in the world, you would think they would have been vigilant for bone mets since I was a rare bone primary. I should have had a bone scan no longer than a year out from my last one, which would have put it at November 2007 -- about a month after my scalp became tender. At that point, we may have only one or two to deal with and therefore had more options.
This experience really leads me to question any doctor, even the so-called "experts." Don't let what has happened here happen to you: Question everything and speak up when you think something is slipping through the cracks. I wish I had.
I'll be back after my discussion about chemo with Dr. K.
Monday, September 15, 2008
Thank you
The outpouring of concern from so many of you over the past few days has been overwhelming. I know it's difficult to know what to say and many of you want to help and don't know what to do. I recommend continuing to do what you have been doing so well for so long: keeping us in your thoughts -- and prayers, if you choose -- and just letting us know you're still out there. It means so much to me to have your continued support and love, and it makes me feel a lot less lonely when things start to get tough to handle.
I'm still pissed off, but I've been doing some research about various radiation therapies and one of the other LMS patients I met recently had her retired surgeon husband contact me. He suggested that we consult with a neurosurgeon to see if the skull mets can be surgically removed. I plan to bring that up with the radiation oncologist tomorrow, as the head of the neurosurgery department at MSKCC apparently works closely with the radiation department. Perhaps he can steer us in the right direction.
I've also put in a call to Massachusetts General Hospital's Proton Radiosurgery center to see if they treat metastases. Loma Linda (California) has a proton radiation center but they only treat primary tumors, not mets. I hope to hear back shortly. Proton radiosurgery targets the exact area of the tumor using various methods (including CT scans and MRIs) rather than blasting away at a more general area (traditional radiation). Since we're talking about mets so close to my brain here, I would prefer the more targeted approach.
I'll let you know when I have more information. In the meantime, again, thank you so very much. I wish I could give each one of you a hug.
I'm still pissed off, but I've been doing some research about various radiation therapies and one of the other LMS patients I met recently had her retired surgeon husband contact me. He suggested that we consult with a neurosurgeon to see if the skull mets can be surgically removed. I plan to bring that up with the radiation oncologist tomorrow, as the head of the neurosurgery department at MSKCC apparently works closely with the radiation department. Perhaps he can steer us in the right direction.
I've also put in a call to Massachusetts General Hospital's Proton Radiosurgery center to see if they treat metastases. Loma Linda (California) has a proton radiation center but they only treat primary tumors, not mets. I hope to hear back shortly. Proton radiosurgery targets the exact area of the tumor using various methods (including CT scans and MRIs) rather than blasting away at a more general area (traditional radiation). Since we're talking about mets so close to my brain here, I would prefer the more targeted approach.
I'll let you know when I have more information. In the meantime, again, thank you so very much. I wish I could give each one of you a hug.
Saturday, September 13, 2008
Sometimes it's somethings
I apologize for the delay in posting but we needed some time to absorb yesterday's news. I have a 3.9 cm lesion in my left ilium (approximately 1.25 inches) that is "consistent" with metastasis. The more "worrisome" issue, in Dr. K's words, is the multiple metastases in my skull. The good news is there is no soft tissue mass outside of the skull. There are two areas where the bone has expanded a bit due to the mass inside, but it is not affecting my brain at this time. Unfortunately, the mets are in my frontal lobe, my parietal lobe, and somewhere near my sinus. (Bones of skull diagram: http://library.thinkquest.org/J0111100/graphics/skull1.JPG) These are not brain tumors, however. These are tumors of the bone and remain contained within the bone.
Right now there are potentially two options available that we are aware of: radiation and chemo. I have a consultation with a radiational oncologist on Tuesday morning to review my case. I'm not sure whether he will tell us if he thinks radiation is an option or if he merely wants to review my case and see me and then discuss the options with Dr. K. She seemed to indicate that she didn't think radiation was going to be an option because there are multiple mets and I believe radiation is usually limited to a certain sized tumor and a single tumor. We'll have to wait and see.
The other option is a heavier duty chemo, like Doxil or AIM, both of which are often used on LMS tumors and mets. I would not be able to have chemo if I were having radiation, although there was another pill-form chemo she mentioned that can be taken along with radiation. At this point, we are once again gathering information before we can move forward. She already mentioned that if the chemo doesn't work, there is currently a stage II clinical trial taking place that I would be a candidate for. I didn't know whether to take that as reassurance that we have options or that she doesn't believe the Doxil or AIM will work.
Yesterday we were simply overwhelmed. Today we've moved to the anger stage, especially since I mentioned the tenderness in my scalp to Dr. K at least once and mentioned the tenderness in my pelvic area to Dr. Healey's residents repeatedly. I don't want to play the blame game because what's done is done and we need to move forward from here, but when you place your faith in doctors who specialize in this type of cancer, it's very frustrating to discover that they have essentially dropped the ball. Should I have pressed the issue and insisted on a bone scan before now? Probably. I think part of it was because I trusted them and if they didn't react to my complaint, I thought it meant it wasn't an issue. The other part of it was likely because I didn't want to know if there was something else wrong. Would a bone scan earlier have made a difference? We'll never know. As I wrote, we need to move forward from here and do whatever we can to fight these mets, but their existence makes the entire situation more complicated and less positive.
I'll write more once we learn something. I know that Dr. K said she was going to have to get a group together to discuss the next step, but she didn't say who that would involve and when she was doing it. I expect to have a response by the end of next week at the latest. I believe they will concentrate on the skull mets first (or along with all the others), but I don't want to go too long without some sort of treatment or the lung mets are likely grow. It's always something.
Thank you to everyone who has been thinking about me and wondering what the outcome was. I wish I had better news for all of us. I plan to fight the good fight, but the evildoers have become more formidable. Let's hope that a tougher treatment will set them back.
Right now there are potentially two options available that we are aware of: radiation and chemo. I have a consultation with a radiational oncologist on Tuesday morning to review my case. I'm not sure whether he will tell us if he thinks radiation is an option or if he merely wants to review my case and see me and then discuss the options with Dr. K. She seemed to indicate that she didn't think radiation was going to be an option because there are multiple mets and I believe radiation is usually limited to a certain sized tumor and a single tumor. We'll have to wait and see.
The other option is a heavier duty chemo, like Doxil or AIM, both of which are often used on LMS tumors and mets. I would not be able to have chemo if I were having radiation, although there was another pill-form chemo she mentioned that can be taken along with radiation. At this point, we are once again gathering information before we can move forward. She already mentioned that if the chemo doesn't work, there is currently a stage II clinical trial taking place that I would be a candidate for. I didn't know whether to take that as reassurance that we have options or that she doesn't believe the Doxil or AIM will work.
Yesterday we were simply overwhelmed. Today we've moved to the anger stage, especially since I mentioned the tenderness in my scalp to Dr. K at least once and mentioned the tenderness in my pelvic area to Dr. Healey's residents repeatedly. I don't want to play the blame game because what's done is done and we need to move forward from here, but when you place your faith in doctors who specialize in this type of cancer, it's very frustrating to discover that they have essentially dropped the ball. Should I have pressed the issue and insisted on a bone scan before now? Probably. I think part of it was because I trusted them and if they didn't react to my complaint, I thought it meant it wasn't an issue. The other part of it was likely because I didn't want to know if there was something else wrong. Would a bone scan earlier have made a difference? We'll never know. As I wrote, we need to move forward from here and do whatever we can to fight these mets, but their existence makes the entire situation more complicated and less positive.
I'll write more once we learn something. I know that Dr. K said she was going to have to get a group together to discuss the next step, but she didn't say who that would involve and when she was doing it. I expect to have a response by the end of next week at the latest. I believe they will concentrate on the skull mets first (or along with all the others), but I don't want to go too long without some sort of treatment or the lung mets are likely grow. It's always something.
Thank you to everyone who has been thinking about me and wondering what the outcome was. I wish I had better news for all of us. I plan to fight the good fight, but the evildoers have become more formidable. Let's hope that a tougher treatment will set them back.
Monday, September 08, 2008
We have returned
We're back from our trip and had a wonderful time. Many thanks to Melinda and Ward for another fabulous, fun and food-filled vacation in Las Vegas. Same place next year?? And a Texas-sized thank you to Kate and Steve for your hospitality, great conversation and interesting tours of the San Antonio area. We had a wonderful time and can't wait to see y'all again real soon!
Tomorrow are my MRIs. I assume Dr. Healey will have the films and reports by Wednesday but I won't have anything to report until after my appointment on Friday with Dr. K. I'll be sure to update my blog at that time.
For anyone in the way of any of the past, present or future hurricanes and tropical storms, keep safe. Our thoughts are with you.
Tomorrow are my MRIs. I assume Dr. Healey will have the films and reports by Wednesday but I won't have anything to report until after my appointment on Friday with Dr. K. I'll be sure to update my blog at that time.
For anyone in the way of any of the past, present or future hurricanes and tropical storms, keep safe. Our thoughts are with you.
Subscribe to:
Posts (Atom)
Posts
