I called the doctor's office yesterday, and spoke with her nurse. She ended up putting the doctor on the phone. I asked about going off the Ibrance. My research confirmed a couple things.
1. For quite awhile now, I've realized that Israel, and the UK tend to PUBLISH a lot more of their research findings than we do here in the US. I'm not saying big pharma doesn't do the research here. I'm saying they pick, and choose the information they want released.
2. I've also noticed that there are medications, procedures, devices, and other medical advances that tend to get shelved longer, or modified here, not to ensure their safety, but totally based on the impact they make on income for big pharma, and the medical community.
That being said, I had mentioned my blood work was coming back indicating a serious problem. The blood work was indicating either the cancer, or the chemo had modified my DNA, so I had a form of leukemia. Metastatic breast cancer isn't enough to deal with, right? At first, I was devastated. The more research I did, the worse it got, and I had to do my research in small doses.
I came across a study that was recently published in the UK, and more recently in the New England Journal of Medicine. During the trials involving 168 people, right from the start, 3 people began showing similar blood test results to mine. By the 5th. cycle of Ibrance, their blood work was identical to my last results. I was on my 5th. cycle of Ibrance, when the doctor hit me with the bad news. Everything indicated a genetic mutation, which is medical speak for a form of leukemia. When bone marrow biopsies were taken, the results showed no actual change in leukocytes, or anything genetic. The change was caused by the Ibrance. When taken off the Ibrance, by the 5th cycle, their blood work came back normal. During the course of the 5 year trial, several others began showing the same type results in their blood tests, so they too were taken off the Ibrance, and soon their blood work came back normal. They also noticed that in the instances where this occurred, the Ibrance was ineffective as a treatment. They suggested using one of the factors of the blood test as a biomarker, to discontinue treatment with Ibrance. I've known this for at least a week now.
Yesterday, they called to schedule my CT scans, and MRI. Later, the Ibrance people called to schedule delivery of my Ibrance. I let it go to voicemail. That's when I called my oncologist's nurse, to tell her about the study, and ask about discontinuing the Ibrance. She put the doctor on, and we discussed it.
First off, she was shocked I had even heard of the European Hematology Assn., or knew what it was, and told me so. Her first comment was, but that happened to so few people. My response was, so what? Just because it happened to so few people, does not mean it's not happening to me. True. Next, I mentioned that the entire study was done on "so few" people, since there were only 168 in the trials. 3 out of 168, isn't "so few" people. Next, it happened later on to more people. Remember, you have to deduct the original 3 from the 168, since they discontinued taking the medication. We're down to 165 people. Over the next 5 years, there were at least 5 others that did this too. 8 out of 168 people is not exactly "so few". Nonetheless, in all instances, it showed the Ibrance would not work for me. Could I stop taking the Ibrance? Then she remembered who she was talking to. I mentioned Verzenio as a possible option.
First off, she wants me to continue on the Ibrance until the next office visit. We have a baseline she's following on my scans. The blood work shows changes, but the scans may not bear that out, in which case she is inclined to agree that it's probably the Ibrance causing the problem.
Next we discussed the possibility of Verzenio. Normally, just before a new cancer treatment is released, their pharmaceutical reps are all over it, providing the oncologists, and various cancer doctors with all the information, so they're armed, and ready when it hits the market. She saw the commercial for it on tv the other night, and had never heard of it. She asked some of the other oncologists at the cancer center there, she asked at the University, she asked at Lee Moffit, and none of the oncologists have gotten any advanced info on it. She's already called the rep., and expects be highly informed by my next visit.
1. For quite awhile now, I've realized that Israel, and the UK tend to PUBLISH a lot more of their research findings than we do here in the US. I'm not saying big pharma doesn't do the research here. I'm saying they pick, and choose the information they want released.
2. I've also noticed that there are medications, procedures, devices, and other medical advances that tend to get shelved longer, or modified here, not to ensure their safety, but totally based on the impact they make on income for big pharma, and the medical community.
That being said, I had mentioned my blood work was coming back indicating a serious problem. The blood work was indicating either the cancer, or the chemo had modified my DNA, so I had a form of leukemia. Metastatic breast cancer isn't enough to deal with, right? At first, I was devastated. The more research I did, the worse it got, and I had to do my research in small doses.
I came across a study that was recently published in the UK, and more recently in the New England Journal of Medicine. During the trials involving 168 people, right from the start, 3 people began showing similar blood test results to mine. By the 5th. cycle of Ibrance, their blood work was identical to my last results. I was on my 5th. cycle of Ibrance, when the doctor hit me with the bad news. Everything indicated a genetic mutation, which is medical speak for a form of leukemia. When bone marrow biopsies were taken, the results showed no actual change in leukocytes, or anything genetic. The change was caused by the Ibrance. When taken off the Ibrance, by the 5th cycle, their blood work came back normal. During the course of the 5 year trial, several others began showing the same type results in their blood tests, so they too were taken off the Ibrance, and soon their blood work came back normal. They also noticed that in the instances where this occurred, the Ibrance was ineffective as a treatment. They suggested using one of the factors of the blood test as a biomarker, to discontinue treatment with Ibrance. I've known this for at least a week now.
Yesterday, they called to schedule my CT scans, and MRI. Later, the Ibrance people called to schedule delivery of my Ibrance. I let it go to voicemail. That's when I called my oncologist's nurse, to tell her about the study, and ask about discontinuing the Ibrance. She put the doctor on, and we discussed it.
First off, she was shocked I had even heard of the European Hematology Assn., or knew what it was, and told me so. Her first comment was, but that happened to so few people. My response was, so what? Just because it happened to so few people, does not mean it's not happening to me. True. Next, I mentioned that the entire study was done on "so few" people, since there were only 168 in the trials. 3 out of 168, isn't "so few" people. Next, it happened later on to more people. Remember, you have to deduct the original 3 from the 168, since they discontinued taking the medication. We're down to 165 people. Over the next 5 years, there were at least 5 others that did this too. 8 out of 168 people is not exactly "so few". Nonetheless, in all instances, it showed the Ibrance would not work for me. Could I stop taking the Ibrance? Then she remembered who she was talking to. I mentioned Verzenio as a possible option.
First off, she wants me to continue on the Ibrance until the next office visit. We have a baseline she's following on my scans. The blood work shows changes, but the scans may not bear that out, in which case she is inclined to agree that it's probably the Ibrance causing the problem.
Next we discussed the possibility of Verzenio. Normally, just before a new cancer treatment is released, their pharmaceutical reps are all over it, providing the oncologists, and various cancer doctors with all the information, so they're armed, and ready when it hits the market. She saw the commercial for it on tv the other night, and had never heard of it. She asked some of the other oncologists at the cancer center there, she asked at the University, she asked at Lee Moffit, and none of the oncologists have gotten any advanced info on it. She's already called the rep., and expects be highly informed by my next visit.
