- J
- C
MOST RECENT AML UPDATE on 10/23/2018:
There are so many of you that I wish I could share this news with personally, but after calling my mom, sister, and Phil I am just too emotionally drained to even send a text. So I’m sorry that you have to hear this news on Facebook, but it is the most wide-spread effective way that I know to tell everyone.
The news keeps turning from bad to worse. I can no longer put on a positive face and pretend like everything is going to be ok, it’s all going to work out. Today I was forced to face the sharp reality that I may not make it to 35. Or Christmas. Or even Thanksgiving.
The final results of the biopsy that was supposed to be “empty” showed that there is still leukemia in the marrow, and my daily blood labs show that it is also in my blood. Because the leukemia is still present, this means that my immune system will not return to normal after this round of chemo and I will remain neutropenic and extremely susceptible to infections and continue to need transfusions of blood and platelets. Without treatment, or if the next subsequent treatment does not work, life ending complications are expected to arise within the next 4-8 weeks. This could be caused by an infection due to no immune system, bleeding to death due to no platelets to clot my blood (through a cut/wound or internally), lack of oxygen circulating through my body due to no hemoglobin, etc.
Dr. Bixby, my oncologist at UofM came to my room today to discuss the results and potential next steps. If I decide to continue treatment here at UofM he only has one option for me. This option is a combination of two drugs, one of which is not FDA approved for AML (it is used for a different leukemia) and likely wouldn’t be approved by my insurance, and he said it would probably cost about $16,000 if that was the case. This treatment has only been used here for 4 months, on 30 people. The response rate has been 10-20%, with some achieving remission after one round and others after two, the rest not at all. No one with my specific, aggressive type of AML has been treated with this protocol, and because of my aggressive mutation he estimates my chance of having a response to be less than what they have observed so far.
He was also in touch with the team at MD Anderson and they would like me to come meet with an oncologist there (I only met with a transplant doctor before) and my doctor said that at MD Anderson they have many more options available for clinical trials. MD Anderson would like me to come down ASAP to be evaluated, hear the treatment options, and potentially start treatment. I am waiting to hear back on an appointment time but we currently have a flight booked for 630am on Friday to go to Houston. It’s a one way flight. I don’t know when we will be back.
I thank everyone for their love and support over these past 2 and a half years of cancer hell. I really can’t express how much it means to me. During these next few days we are going to be very busy figuring out the logistics of how to get me safely to Houston, whether we are going to be staying there long term, where we are going to stay, and how we are going to afford all of it.
I am unable to accept visitors other than our immediate family before we leave and ask for no phone calls at this time please. Any donations to help with our costs associated with traveling to or staying in Houston are much appreciated, as my disability income already does not cover our monthly expenses and we have already been burning through savings this past 6 months.
ORIGINAL NET DIAGNOSIS STORY:
My name is Meghan Carter. I am 32 years old and on May 13, 2016 I received news that would change my life forever. I have incurable, Stage IV, High Grade Neuroendocrine Cancer. The cancer originated in my pancreas and had already spread to my liver and surrounding lymphnodes.
Neuroendocrine Cancer is a rare form of cancer that is not organ specific. It can originate from a variety of different places including the lungs, pancreas, or stomach. Those with NET often have symptoms that are misdiagnosed as common illnesses such as IBS or food allergies for years before receiving a proper diagnosis.
Neuroendocrine tumors are often well differentiated and slow growing, however a small subset of them (like mine!) are poorly differentiated and very fast growing, which is referred to as High Grade. In these cases surgery is not an option and the tumors have to be treated with aggressive chemotherapy. To read more about Neuroendocrine Cancer, my personal journey through diagnosis and treatment, and what I am doing to raise awareness for this rare disease, please follow my blog at www.zebrameg.blogspot.com
Although I am very fortunate to have had both disability and health insurance through all of this, I still have a large portion of out of pocket expense for my medical treatments and things are stretched very thin right now.
I have been on disability from work since May, which means I only receive a portion of my wages and we have had to use a lot of our savings to meet our day to day expenses. In addition, my insurance plan has a high deductible and a June 30 fiscal year, meaning that I had just barely been billed for enough expenses to meet my plan's deductible and annual out of pocket maximum after being diagnosed when I had to start all over again on July 1. The result of this is that I have accrued medical bills equal to two insurance years worth of expense - just over $10,000 - in only 5 months time.
Those that know me well know that it is difficult for me to ask for help, but as it seems like at least one new medical bill arrives in the mail almost every day I now feel that it has reached a point that I don't have any other options. If you are able to donate anything at all, it is so greatly appreciated.
There are so many of you that I wish I could share this news with personally, but after calling my mom, sister, and Phil I am just too emotionally drained to even send a text. So I’m sorry that you have to hear this news on Facebook, but it is the most wide-spread effective way that I know to tell everyone.
The news keeps turning from bad to worse. I can no longer put on a positive face and pretend like everything is going to be ok, it’s all going to work out. Today I was forced to face the sharp reality that I may not make it to 35. Or Christmas. Or even Thanksgiving.
The final results of the biopsy that was supposed to be “empty” showed that there is still leukemia in the marrow, and my daily blood labs show that it is also in my blood. Because the leukemia is still present, this means that my immune system will not return to normal after this round of chemo and I will remain neutropenic and extremely susceptible to infections and continue to need transfusions of blood and platelets. Without treatment, or if the next subsequent treatment does not work, life ending complications are expected to arise within the next 4-8 weeks. This could be caused by an infection due to no immune system, bleeding to death due to no platelets to clot my blood (through a cut/wound or internally), lack of oxygen circulating through my body due to no hemoglobin, etc.
Dr. Bixby, my oncologist at UofM came to my room today to discuss the results and potential next steps. If I decide to continue treatment here at UofM he only has one option for me. This option is a combination of two drugs, one of which is not FDA approved for AML (it is used for a different leukemia) and likely wouldn’t be approved by my insurance, and he said it would probably cost about $16,000 if that was the case. This treatment has only been used here for 4 months, on 30 people. The response rate has been 10-20%, with some achieving remission after one round and others after two, the rest not at all. No one with my specific, aggressive type of AML has been treated with this protocol, and because of my aggressive mutation he estimates my chance of having a response to be less than what they have observed so far.
He was also in touch with the team at MD Anderson and they would like me to come meet with an oncologist there (I only met with a transplant doctor before) and my doctor said that at MD Anderson they have many more options available for clinical trials. MD Anderson would like me to come down ASAP to be evaluated, hear the treatment options, and potentially start treatment. I am waiting to hear back on an appointment time but we currently have a flight booked for 630am on Friday to go to Houston. It’s a one way flight. I don’t know when we will be back.
I thank everyone for their love and support over these past 2 and a half years of cancer hell. I really can’t express how much it means to me. During these next few days we are going to be very busy figuring out the logistics of how to get me safely to Houston, whether we are going to be staying there long term, where we are going to stay, and how we are going to afford all of it.
I am unable to accept visitors other than our immediate family before we leave and ask for no phone calls at this time please. Any donations to help with our costs associated with traveling to or staying in Houston are much appreciated, as my disability income already does not cover our monthly expenses and we have already been burning through savings this past 6 months.
ORIGINAL NET DIAGNOSIS STORY:
My name is Meghan Carter. I am 32 years old and on May 13, 2016 I received news that would change my life forever. I have incurable, Stage IV, High Grade Neuroendocrine Cancer. The cancer originated in my pancreas and had already spread to my liver and surrounding lymphnodes.
Neuroendocrine Cancer is a rare form of cancer that is not organ specific. It can originate from a variety of different places including the lungs, pancreas, or stomach. Those with NET often have symptoms that are misdiagnosed as common illnesses such as IBS or food allergies for years before receiving a proper diagnosis.
Neuroendocrine tumors are often well differentiated and slow growing, however a small subset of them (like mine!) are poorly differentiated and very fast growing, which is referred to as High Grade. In these cases surgery is not an option and the tumors have to be treated with aggressive chemotherapy. To read more about Neuroendocrine Cancer, my personal journey through diagnosis and treatment, and what I am doing to raise awareness for this rare disease, please follow my blog at www.zebrameg.blogspot.com
Although I am very fortunate to have had both disability and health insurance through all of this, I still have a large portion of out of pocket expense for my medical treatments and things are stretched very thin right now.
I have been on disability from work since May, which means I only receive a portion of my wages and we have had to use a lot of our savings to meet our day to day expenses. In addition, my insurance plan has a high deductible and a June 30 fiscal year, meaning that I had just barely been billed for enough expenses to meet my plan's deductible and annual out of pocket maximum after being diagnosed when I had to start all over again on July 1. The result of this is that I have accrued medical bills equal to two insurance years worth of expense - just over $10,000 - in only 5 months time.
Those that know me well know that it is difficult for me to ask for help, but as it seems like at least one new medical bill arrives in the mail almost every day I now feel that it has reached a point that I don't have any other options. If you are able to donate anything at all, it is so greatly appreciated.