Targeted Drug Therapies
I saw the folks in the targeted drugs therapy group yesterday. Just so we all understand, targeted drugs are a nice way of saying Phase I studies. Phase I studies are a nice way of saying, "We really don't know what to do, so we are just going to try some stuff and see if anything works."
Not really. Well, yes really, but it isn't quite that bad...
Here's the deal. I am about to start my second round of taxol. I have infusions once a week for four weeks, then I get a week off. (I am currently in my week off for the first round). Then I will do a third round - which takes us to Christmas - before we scan again to see if taxol is working.
If/when taxol quits working I can choose to participate in a phase I study and add about 5 more people to my medical team. Phase I is where they determine if a therapy works and what the best dosage of medicine should be. For example, they are doing a study to use two FDA approved drugs together. One of the drugs is arimidex. Arimidex is a hormone therapy (as apposed to the poison of chemotherapy). I took arimidex after I took taxol last time and it worked for 2 years.
This study has "four arms" meaning it combines arimidex with four different drugs (separately) to see if they are more effective together than arimidex alone. I like this study because I took arimidex before and know what I am getting into and because both medications are in pill form so I do not need to go to MD all the time. Because I know what I am getting into, I know it won't be any picnic in the beginning. Some of you might remember how I could barely walk last time...
Because both of these drugs are FDA approved, I will need insurance approval. It might be tricky to get approval for the second drug because it is not normally used for breast cancer.
Another study I might be able to do is a completely new drug that put someone somewhere into complete remission. However, that has not been replicated as of yet. Furthermore, this drug requires that I practically live down there. The infusions are through my port several times a week and it requires constant monitoring. Not a big fan of this one right now.
This is how phase I studies work: They take a group of about 5 people and give them the first cycle of treatment. Let's say, for example, that the first cycle is 200 mg of the drug for 30 days. However, not each patient starts on the same day. They have to find people who qualify and then get them started. Once 5 people get started, the study closes (temporarily).
Those 5 people are monitored throughout the first cycle and once ALL of them complete the first cycle without any surprise side-effects (like heart attacks), they can move to the second cycle. During the second cycle, the medication dosage will likely be increased. The idea is that we are human lab rats and they are trying to determine if the drug works and what the "safest" dosage is.
Sounds kind of scary, doesn't it?
For this reason , studies open and close all the time. Each study has it's own "expert" who is responsible for knowing the qualifications and status of each study. Therefore , my doctor will check the "daily status" of studies to determine what is open or what will open shortly that I would qualify for. Then she will meet with the experts to see how the study is going and which options would be best for me. I might go back to her in January and have an entirely new set of options available. However, based on the fact that I am pretty far out of started any targeted drug therapies, they have a pretty good idea of what will be available. Most people go in and start something that day.
The truth is that a lot of women who are no longer with us were once Phase I study participants so the rest of us are still here raising our kids and kissing our husbands.
The good news for me in all of this is that my doctor for targeted drugs is also in the breast oncology group and she has worked very closely with my breast oncologist for years. In fact, when my doc is out of town, I see her. So we already have a relationship, she already knows what has and has not worked for me, and I like her.
Therefore, our plan is to continue taxol until it quits working. In about a month from now, they will request approval for the arimidex/other drug combo from my insurance company. I like that arimidex worked before and would be willing to do that study and take a break from chemo for a while.
There you have it - now you know about targeted drugs and how thing are.
There's just one more little thing that I probably shouldn't even mention, but it is really starting to bug me. If ONE MORE PERSON tells me I don't look like I have cancer I am going to scream. I have NEVER looked like I have cancer (ok - maybe I do right now because my hair is running off, but otherwise...)
We were in the middle of the doctor parade yesterday (this is when you see the vital signs nurse, then you see the nurse practitioner who asks you fifty million questions, then you see the fellow, then you see your doctor, then you see another person to explain all the side effects, etc). So we were in there with the Fellow and he was talking about how remarkably good I look and how well I am doing for someone with my stage of the disease. I am sure it had something to so with being there with my sister-in-law, Kristi, who I find it very easy to laugh with. So were are in there laughing and cutting up....
I don't know why it is starting to bother me so much. Maybe it's because I am really getting tired of dealing with this disease. I want to have the energy I used to have. I want to have the body I used to have. Maybe it is just sinking in that I might never have that again - that all this mess might really be permanent. Maybe I don't want to be told how good I look when I know I look like poo-poo. I don't know, but I sure wanted to hit that doctor when He told me how great I was doing and that I didn't look or act like I had cancer. Maybe I just wanted to say "Are you kidding? Do you think I would really allow myself to be like this if I DIDN'T have cancer?"
Big sigh. Maybe I am just being a big baby. Still, I think I am going to go walk on my elliptical. Oh, the vanity.
Much love! Kelli
Not really. Well, yes really, but it isn't quite that bad...
Here's the deal. I am about to start my second round of taxol. I have infusions once a week for four weeks, then I get a week off. (I am currently in my week off for the first round). Then I will do a third round - which takes us to Christmas - before we scan again to see if taxol is working.
If/when taxol quits working I can choose to participate in a phase I study and add about 5 more people to my medical team. Phase I is where they determine if a therapy works and what the best dosage of medicine should be. For example, they are doing a study to use two FDA approved drugs together. One of the drugs is arimidex. Arimidex is a hormone therapy (as apposed to the poison of chemotherapy). I took arimidex after I took taxol last time and it worked for 2 years.
This study has "four arms" meaning it combines arimidex with four different drugs (separately) to see if they are more effective together than arimidex alone. I like this study because I took arimidex before and know what I am getting into and because both medications are in pill form so I do not need to go to MD all the time. Because I know what I am getting into, I know it won't be any picnic in the beginning. Some of you might remember how I could barely walk last time...
Because both of these drugs are FDA approved, I will need insurance approval. It might be tricky to get approval for the second drug because it is not normally used for breast cancer.
Another study I might be able to do is a completely new drug that put someone somewhere into complete remission. However, that has not been replicated as of yet. Furthermore, this drug requires that I practically live down there. The infusions are through my port several times a week and it requires constant monitoring. Not a big fan of this one right now.
This is how phase I studies work: They take a group of about 5 people and give them the first cycle of treatment. Let's say, for example, that the first cycle is 200 mg of the drug for 30 days. However, not each patient starts on the same day. They have to find people who qualify and then get them started. Once 5 people get started, the study closes (temporarily).
Those 5 people are monitored throughout the first cycle and once ALL of them complete the first cycle without any surprise side-effects (like heart attacks), they can move to the second cycle. During the second cycle, the medication dosage will likely be increased. The idea is that we are human lab rats and they are trying to determine if the drug works and what the "safest" dosage is.
Sounds kind of scary, doesn't it?
For this reason , studies open and close all the time. Each study has it's own "expert" who is responsible for knowing the qualifications and status of each study. Therefore , my doctor will check the "daily status" of studies to determine what is open or what will open shortly that I would qualify for. Then she will meet with the experts to see how the study is going and which options would be best for me. I might go back to her in January and have an entirely new set of options available. However, based on the fact that I am pretty far out of started any targeted drug therapies, they have a pretty good idea of what will be available. Most people go in and start something that day.
The truth is that a lot of women who are no longer with us were once Phase I study participants so the rest of us are still here raising our kids and kissing our husbands.
The good news for me in all of this is that my doctor for targeted drugs is also in the breast oncology group and she has worked very closely with my breast oncologist for years. In fact, when my doc is out of town, I see her. So we already have a relationship, she already knows what has and has not worked for me, and I like her.
Therefore, our plan is to continue taxol until it quits working. In about a month from now, they will request approval for the arimidex/other drug combo from my insurance company. I like that arimidex worked before and would be willing to do that study and take a break from chemo for a while.
There you have it - now you know about targeted drugs and how thing are.
There's just one more little thing that I probably shouldn't even mention, but it is really starting to bug me. If ONE MORE PERSON tells me I don't look like I have cancer I am going to scream. I have NEVER looked like I have cancer (ok - maybe I do right now because my hair is running off, but otherwise...)
We were in the middle of the doctor parade yesterday (this is when you see the vital signs nurse, then you see the nurse practitioner who asks you fifty million questions, then you see the fellow, then you see your doctor, then you see another person to explain all the side effects, etc). So we were in there with the Fellow and he was talking about how remarkably good I look and how well I am doing for someone with my stage of the disease. I am sure it had something to so with being there with my sister-in-law, Kristi, who I find it very easy to laugh with. So were are in there laughing and cutting up....
I don't know why it is starting to bother me so much. Maybe it's because I am really getting tired of dealing with this disease. I want to have the energy I used to have. I want to have the body I used to have. Maybe it is just sinking in that I might never have that again - that all this mess might really be permanent. Maybe I don't want to be told how good I look when I know I look like poo-poo. I don't know, but I sure wanted to hit that doctor when He told me how great I was doing and that I didn't look or act like I had cancer. Maybe I just wanted to say "Are you kidding? Do you think I would really allow myself to be like this if I DIDN'T have cancer?"
Big sigh. Maybe I am just being a big baby. Still, I think I am going to go walk on my elliptical. Oh, the vanity.
Much love! Kelli