I read another blog this week by a woman about my age who also has AML. She's currently undergoing the same experimental treatment as me (decitabine) and expressed that if this doesn't work, it's the end of the road for her. I understand the emotional rollercoaster she is on. Fighting to live. The good days for us are the worst days for the rest of the world...our feelings become very relative. My definition of "good" has come to mean an entirely different thing than it did a year ago.
That being said, things are going as well as can be expected right now. Chemo week came and went without too many horrible side effects -- just the standard complaints. I've been able to keep my weight up for the most part, and finally exceeded my starting weight from a year ago. It's still too early to tell, really, if the decitabine is working, though it appears that the disease isn't progressing at a rapid pace. I'm still here -- that's proof enough, I suppose. I still require regular transfusions. Red Cross commercials make me cry. I don't think people really realize the gift they are giving when they donate blood product. It is truly a gift of life. My counts are low this weekend and I am fighting the weariness, shortness of breath, aching muscles, and all that goes with it. It has me actually looking forward to spending Monday getting transfusions.
I may not update for a little while, unless there is something important to note. I'll see my oncologist on May 2nd, do a week of chemo starting May 7th, and have another DLI on May 18th. I'll be getting a much larger "dose" of cells this time, so I would appreciate prayer that it is effective without killing me. Trust me, we transplantees view GVHD with much fear and trembling.
As always, thank you so much for your prayers, love and support.
Saturday, April 21, 2007
Thursday, April 12, 2007
Quick Update
Only one more day of chemo! I'm excited...going to the hospital every day gets old, but again, I'm thankful that I'm not inpatient. So far I haven't noticed many side effects. The skin around my bandage seems to be healing nicely. Thanks for all the prayers! We had a doctor check it yesterday while I was getting chemo, just to be on the safe side. I may switch over to Hypafix (spelling?) tomorrow -- one of my nurses calls it "old lady tape." It's a lot easier on the skin, though I tend to avoid it because it's not waterproof and makes showers difficult. Several have suggested using the tegaderm over top, so I think I'll give that a try. I never really thought I had sensitive skin but tape has often been an issue over the past year.
My platelets seem to be holding a little bit better this time. They were at 21 today and the fellow on call decided to let me go through the weekend, if possible. She told me what to watch for if they get too low and to call SEU at the main hospital if necessary over the weekend. If they get really low there is some risk of stroke or hemorrhage, but that is supposed to be rare. I forgot to ask for a copy of my labs today so I'm not sure what my ANC is like. I just continue to be cautious and always mask up when out at the hospital.
We'll be meeting with my transplant doctor at Barnes on Tuesday. He wants to make sure I don't have any GVHD that I'm not aware of. I spoke with him on the phone the other day and he has decided to wait on the next DLI. I'll find out more on Tuesday, but for now it looks like May or June. He said in his opinion the disease is progressing slowly, if at all. (Blasts were at 13% on Monday, for those in the know.) I was quite pleased to hear that, especially from the same man who gave me a two month prognosis, but he hasn't been following my labs these past few months, so I prefer to have him repeat that after I show him some records on Tuesday.
Thanks so much for all of your prayers. Have a good weekend!
My platelets seem to be holding a little bit better this time. They were at 21 today and the fellow on call decided to let me go through the weekend, if possible. She told me what to watch for if they get too low and to call SEU at the main hospital if necessary over the weekend. If they get really low there is some risk of stroke or hemorrhage, but that is supposed to be rare. I forgot to ask for a copy of my labs today so I'm not sure what my ANC is like. I just continue to be cautious and always mask up when out at the hospital.
We'll be meeting with my transplant doctor at Barnes on Tuesday. He wants to make sure I don't have any GVHD that I'm not aware of. I spoke with him on the phone the other day and he has decided to wait on the next DLI. I'll find out more on Tuesday, but for now it looks like May or June. He said in his opinion the disease is progressing slowly, if at all. (Blasts were at 13% on Monday, for those in the know.) I was quite pleased to hear that, especially from the same man who gave me a two month prognosis, but he hasn't been following my labs these past few months, so I prefer to have him repeat that after I show him some records on Tuesday.
Thanks so much for all of your prayers. Have a good weekend!
Monday, April 09, 2007
Chemo Round Two
I'm writing from Ellis Fischel once again. We've been here since a little before 8 a.m. I'm about halfway done with today's dose of Decitabine, and then I'll start a bag of platelets. They were down to 8 today and as a result I'm covered with petechiae rash. I'm hoping they'll hold better this time. I read over the weekend that it's possible for the body to eventually build up a resistance to platelet infusions and quit responding. For that reason, they don't give any more than necessary.
Prayer requests right now are for mild side effects from chemo. I'm getting Zofran again as a premed, and using another anti-emetic at home. Last time nausea seemed to be the worst side effect, and for the most part I could manage it with the drugs. The other major side effect for me was a constant tense, jittery feeling. I'm currently undergoing hormone therapy to deal with some disease side effects, so it's a bit of an emotional rollercoaster. And of course, low counts. My ANC was up to 1200 today. I was very pleased with that. Still only about half of what a normal person would have on the low end. Also, I've developed an area of broken skin around the bandage on my Hickman catheter. The bandage is called tagaderm, and it's similar to a sticky-sided saran wrap. Sometimes I react to it, and I would appreciate prayer that it would heal quickly and not get infected, as it's only about 1" from the actual catheter site. If the site becomes infected they'll have to pull the line and I'll need outpatient surgery to place another one. I don't even want to think about the possibility. Healing is a slow process when counts are low -- in the meantime I'm keeping Neosporin on it to help ward off an infection.
I hope everyone had a blessed Resurrection Sunday. In light of everything in my life this year, I am especially thankful that Christ has risen, and death has been swallowed up in victory.
Prayer requests right now are for mild side effects from chemo. I'm getting Zofran again as a premed, and using another anti-emetic at home. Last time nausea seemed to be the worst side effect, and for the most part I could manage it with the drugs. The other major side effect for me was a constant tense, jittery feeling. I'm currently undergoing hormone therapy to deal with some disease side effects, so it's a bit of an emotional rollercoaster. And of course, low counts. My ANC was up to 1200 today. I was very pleased with that. Still only about half of what a normal person would have on the low end. Also, I've developed an area of broken skin around the bandage on my Hickman catheter. The bandage is called tagaderm, and it's similar to a sticky-sided saran wrap. Sometimes I react to it, and I would appreciate prayer that it would heal quickly and not get infected, as it's only about 1" from the actual catheter site. If the site becomes infected they'll have to pull the line and I'll need outpatient surgery to place another one. I don't even want to think about the possibility. Healing is a slow process when counts are low -- in the meantime I'm keeping Neosporin on it to help ward off an infection.
I hope everyone had a blessed Resurrection Sunday. In light of everything in my life this year, I am especially thankful that Christ has risen, and death has been swallowed up in victory.
Friday, April 06, 2007
Information and some answers
Over the past months I've received a lot of e-mail. It varies from "I'm praying for you" to detailed advice. I haven't taken the time to reply to all of them, especially the more detailed ones which in turn require a detailed response. It's easy to get tired of explaining things and justifying to family and friends decisions we have made, to be perfectly honest, even though I know the advice and questions come out of a sincere desire to help. So, I've decided to do a "questions and answers" post to address the questions we most commonly receive.
First, I want to explain very basically what AML is. There will be approximately 12,000 new cases in the US this year. Of those, 90% will affect people over 65 years of age. 90% will die. There is debate among the leukemia community as to whether these statistics are accurate based on the fact that most AML deaths are recorded under the secondary cause of death, such as pneumonia or influenza. A family member of the deceased needs to stay on top of the doctor in order to have the cause of death recorded as AML.
AML is a result of acquired genetic damage to the DNA of developing cells in the bone marrow. In my case, they were unable to find any genetic changes, and I haven't been exposed to things like benzene or radiation and never smoked, so I was told it just happened one day like being hit by lightning. (Studies now show that it only takes the carcinogens in the smoke of one cigarette to cause irreversible genetic damage, so I certainly don't rule out second hand smoke as a possibility. Unfortunately none of us have managed to avoid cigarette smoke all of our lives.) We feel there is still a genetic marker somewhere, but it has yet to be discovered. One of the chromosomal changes, dubbed Philadelphia after its place of discovery, was just found in the past ten years. AML is also not a result of a compromised immune system or a failure to think positively.
The effects of AML are an uncontrolled, exaggerated growth of cells called leukemic blasts which fail to function as normal blood cells. My oncologist refers to them as juvenile delinquents. The other major effect is a blockage of the normal cells which in turn causes me to be anemic, have low platelets and become neutropenic. Lots of people have implied that my struggle with low counts and constant need for blood and platelets is because we've chosen to do chemo, not realizing that my disease alone does all the damage of chemo. The difference with chemo is that something is attacking the blasts along with all the other cells.*
The overwhelming advice we are given is to eat only organic or raw foods. I recognize that with most diseases, this is probably a good approach to use along with treatment. And certainly eating healthy is something I've focused on, but an organic or raw food diet poses significant risk to AML patients because our immune system is compromised from the disease. It's impossible to wash all the bacteria from raw foods (such as E. Coli or more common strains), and while most people can handle it, AML patients cannot. It's not just the doctors being "anti natural" -- it's a fact that I have to deal with everyday. I avoid uncooked foods just like I avoid public places. Unfortunately it goes with the diagnosis. Through study we have also learned that I need to avoid an iron-rich diet which has me avoiding meat along with a lot of green vegetables and some fruits. It is our understanding that the leukemic blasts "feed" on iron and I honestly feel my disease is progressing at a slower rate with these diet changes, though only time will tell for sure.
The one aspect of the disease that I hate the most is the compromised immune system. I have missed anniversary parties, weddings and funerals this past year, always weighing the benefit against the risk of death. At this time it is paramount that I stay healthy. AML patients die of secondary diseases as a result of low blood counts. If I stay healthy, I stay alive, and I have time to fight.
I have become increasingly aware of the danger of giving medical advice to others. (As opposed to making someone aware of a possible treatment so they can research how it may apply to their illness.) Even within AML there are subtypes and chromosomal involvement or deletion which cause treatment to vary greatly. What is good for one patient may kill another, and certainly leukemia often gets lumped in with other types of cancer and recommendations are based upon a friend or family member who once had breast or prostrate cancer, the two most common types. It's frustrating, and I often find myself repeating "they're not the same!!" Unfortunately cancer is a very wide category, and each case is unique. To that end, I do not want anything I have written or any treatment options I have mentioned on this blog to ever be construed as medical advice for another patient. My advice has been and continues to be -- learn about your disease. Study it. Learn to communicate with your doctors and get multiple opinions. Try to have a patient advocate. I don't have one professionally, though I feel my husband functions as such, as have other family members when needed. We've consulted with multiple hospitals, cancer patient advocates, oncologists, hematologists, immunologists, naturopaths and a psychiatrist. All have helped to give us information on different aspects of this disease, and I find the knowledge helps so much in our own personal fight.
Again, thank you for the love and care that each e-mail expresses, and I hope this has helped to clarify AML and the treatment options we are pursuing. We have been very grateful for everyone who has taken the time to make us aware of possible treatments, and it is only my intention to "get a reply" to everyone without taking a lot of time away from my family right now.
*I obtained most of this information from the following website:
http://www.leukemia-lymphoma.org/all_page?item_id=8459
First, I want to explain very basically what AML is. There will be approximately 12,000 new cases in the US this year. Of those, 90% will affect people over 65 years of age. 90% will die. There is debate among the leukemia community as to whether these statistics are accurate based on the fact that most AML deaths are recorded under the secondary cause of death, such as pneumonia or influenza. A family member of the deceased needs to stay on top of the doctor in order to have the cause of death recorded as AML.
AML is a result of acquired genetic damage to the DNA of developing cells in the bone marrow. In my case, they were unable to find any genetic changes, and I haven't been exposed to things like benzene or radiation and never smoked, so I was told it just happened one day like being hit by lightning. (Studies now show that it only takes the carcinogens in the smoke of one cigarette to cause irreversible genetic damage, so I certainly don't rule out second hand smoke as a possibility. Unfortunately none of us have managed to avoid cigarette smoke all of our lives.) We feel there is still a genetic marker somewhere, but it has yet to be discovered. One of the chromosomal changes, dubbed Philadelphia after its place of discovery, was just found in the past ten years. AML is also not a result of a compromised immune system or a failure to think positively.
The effects of AML are an uncontrolled, exaggerated growth of cells called leukemic blasts which fail to function as normal blood cells. My oncologist refers to them as juvenile delinquents. The other major effect is a blockage of the normal cells which in turn causes me to be anemic, have low platelets and become neutropenic. Lots of people have implied that my struggle with low counts and constant need for blood and platelets is because we've chosen to do chemo, not realizing that my disease alone does all the damage of chemo. The difference with chemo is that something is attacking the blasts along with all the other cells.*
The overwhelming advice we are given is to eat only organic or raw foods. I recognize that with most diseases, this is probably a good approach to use along with treatment. And certainly eating healthy is something I've focused on, but an organic or raw food diet poses significant risk to AML patients because our immune system is compromised from the disease. It's impossible to wash all the bacteria from raw foods (such as E. Coli or more common strains), and while most people can handle it, AML patients cannot. It's not just the doctors being "anti natural" -- it's a fact that I have to deal with everyday. I avoid uncooked foods just like I avoid public places. Unfortunately it goes with the diagnosis. Through study we have also learned that I need to avoid an iron-rich diet which has me avoiding meat along with a lot of green vegetables and some fruits. It is our understanding that the leukemic blasts "feed" on iron and I honestly feel my disease is progressing at a slower rate with these diet changes, though only time will tell for sure.
The one aspect of the disease that I hate the most is the compromised immune system. I have missed anniversary parties, weddings and funerals this past year, always weighing the benefit against the risk of death. At this time it is paramount that I stay healthy. AML patients die of secondary diseases as a result of low blood counts. If I stay healthy, I stay alive, and I have time to fight.
I have become increasingly aware of the danger of giving medical advice to others. (As opposed to making someone aware of a possible treatment so they can research how it may apply to their illness.) Even within AML there are subtypes and chromosomal involvement or deletion which cause treatment to vary greatly. What is good for one patient may kill another, and certainly leukemia often gets lumped in with other types of cancer and recommendations are based upon a friend or family member who once had breast or prostrate cancer, the two most common types. It's frustrating, and I often find myself repeating "they're not the same!!" Unfortunately cancer is a very wide category, and each case is unique. To that end, I do not want anything I have written or any treatment options I have mentioned on this blog to ever be construed as medical advice for another patient. My advice has been and continues to be -- learn about your disease. Study it. Learn to communicate with your doctors and get multiple opinions. Try to have a patient advocate. I don't have one professionally, though I feel my husband functions as such, as have other family members when needed. We've consulted with multiple hospitals, cancer patient advocates, oncologists, hematologists, immunologists, naturopaths and a psychiatrist. All have helped to give us information on different aspects of this disease, and I find the knowledge helps so much in our own personal fight.
Again, thank you for the love and care that each e-mail expresses, and I hope this has helped to clarify AML and the treatment options we are pursuing. We have been very grateful for everyone who has taken the time to make us aware of possible treatments, and it is only my intention to "get a reply" to everyone without taking a lot of time away from my family right now.
*I obtained most of this information from the following website:
http://www.leukemia-lymphoma.org/all_page?item_id=8459
Friday Update
I'm sitting in a bed at Ellis Fischel, about halfway through my second unit of red cells for the day. I've been here since 8 a.m., and it's going on 4 p.m. Transfusions have become a sort of part time job. So far I've needed a blood transfusion about every other week. My platelets haven't been holding well -- I had a unit last Friday, again on Wednesday, and they're in the 30s again today, so I'm sure I'll need more on Monday. I get them anytime the count drops below 20 -- an average person would want to be 150 on the low end, just to give an idea. Anything below 50 is dangerous. A few weeks ago I hit my record low of 7. I don't want to get back there.
I met with Dr. Perry on Wednesday and we will continue with chemo next week as planned. Just like last time -- five days and then off for three weeks. At this point I haven't shown any significant GVHD so I expect to have another DLI 10-14 days after this round of chemo. I don't really have much to say as far as disease progression goes. The chemo drug we are using causes the counts to jump all over the place so there's no real way to tell what's going on at this point. I expect to have a bone marrow biopsy/aspiration after the three month point, sometime in May. Somedays I feel really good, and other days I'm wiped out. My husband compares it to pregnancy when people ask how I feel. I'm tired, nauseous and my iron is constantly low.
I continue to be grateful for each healthy day (outside of GVHD). We have focused on supplements that we feel aid my immune system and I've been thrilled to make it through the past three weeks of low counts without getting sick. I am continually reminded of the risks -- so many AML patients end up dying from something like influenza or pneumonia. If I can stay healthy, I have time to fight this. My absolute neutrophil count (ANC) had been sitting at about 100 but was starting to climb as of Tuesday. They like to see it at 1000 before starting another round of chemo.
As always, thanks for your prayers and for the many ways you bless us.
I met with Dr. Perry on Wednesday and we will continue with chemo next week as planned. Just like last time -- five days and then off for three weeks. At this point I haven't shown any significant GVHD so I expect to have another DLI 10-14 days after this round of chemo. I don't really have much to say as far as disease progression goes. The chemo drug we are using causes the counts to jump all over the place so there's no real way to tell what's going on at this point. I expect to have a bone marrow biopsy/aspiration after the three month point, sometime in May. Somedays I feel really good, and other days I'm wiped out. My husband compares it to pregnancy when people ask how I feel. I'm tired, nauseous and my iron is constantly low.
I continue to be grateful for each healthy day (outside of GVHD). We have focused on supplements that we feel aid my immune system and I've been thrilled to make it through the past three weeks of low counts without getting sick. I am continually reminded of the risks -- so many AML patients end up dying from something like influenza or pneumonia. If I can stay healthy, I have time to fight this. My absolute neutrophil count (ANC) had been sitting at about 100 but was starting to climb as of Tuesday. They like to see it at 1000 before starting another round of chemo.
As always, thanks for your prayers and for the many ways you bless us.
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