Today was day four of five of the FLAG course. I'm still getting all three chemo drugs, plus two sterioids and growth factor (the "g" in flag.) Yesterday was a rough day. I had some breathing problems. We're not sure why, yet, just that I had inhilates in my lungs (i.e. fluid) and started hyperventilating for a while. That was my first experience with hyperventilation. I just felt like I couldn't get my lungs to expand at all. My ox-sat levels dropped so I spent some time on oxygen along with some Robitussin/codeine mix to help manage the cough. Once things cleared up I felt a lot better, and I've been o.k. today. We're waiting on test results on the fluid that showed up on the chest x-ray. One thing they are testing for is CMV.
My blood counts also took a pretty severe hit yesterday. My white count was down to 4.1 yesterday from 19.2 on Thursday. I got both blood and platelet transfusions last night as well, and will most likely get platelets again this evening.
My boys are here tonight, which has definitely made the battle of the past few days much more worth it -- I have really enjoyed spending the evening with my Gray.
Thanks so much for all of your prayers. Please keep them up! Tomorrow will be my last day of FLAG chemo, and then I will have mylotarg on Wednesday. For now they are planning to give me a full dose, depending on what my liver looks like by then. It is a highly toxic drug for the liver, so we have several concerns. It specifically targets snd destroys the protein CD33 in the cells, and I have been told that 95% of my blasts express CD33, so we are very hopeful that this will bring about remission for me.
Saturday, June 30, 2007
Thursday, June 28, 2007
FLAG Day 2 of 5
I started chemo yesterday afternoon. The drugs run rather quickly, so it's not the continuous or hours long infusions I have come to know. That aspect is kind of nice. I'm also still on two different IV antibiotics for my central line and hoping it won't need to be pulled.
I haven't slept well the past two nights, and as a result I can barely keep my eyes open today. I've had a few good naps already. I'm taking dilautid still for the pain in my line and back (from the biopsy) and that tends to make me sleepy as well. I started feeling some nausea last night after finishing chemo but so far it has been manageable and I've been able to keep meals down.
Brandon stayed with me through yesterday afternoon, but he will need to work the next several days. I am hoping he can bring Gary up one evening soon so I can visit with him. He is allowed to visit as long as he passes the health exam at the door. Thankfully he just finished cutting a few teeth last week, so his typical symptoms from that have disappeared and Lord willing, he'll stay healthy. As my counts fall over the next days I will basically be isolated, except for brief visits from family.
For now things are really going as well as can be expected. I am somewhat nervous about the final chemo drug, mylotarg, as it can cause significant liver damage, especially when used with younger post-transplant patients. The doctors have made a good case for using it, though, and say it has the best chance of getting me into remission. If I can reach remission, we will do a second transplant with another sibling donor. That is the what I'm racing for -- the ultimate goal and the only chance of a "cure."
Happy Birthday to my dad today.
I haven't slept well the past two nights, and as a result I can barely keep my eyes open today. I've had a few good naps already. I'm taking dilautid still for the pain in my line and back (from the biopsy) and that tends to make me sleepy as well. I started feeling some nausea last night after finishing chemo but so far it has been manageable and I've been able to keep meals down.
Brandon stayed with me through yesterday afternoon, but he will need to work the next several days. I am hoping he can bring Gary up one evening soon so I can visit with him. He is allowed to visit as long as he passes the health exam at the door. Thankfully he just finished cutting a few teeth last week, so his typical symptoms from that have disappeared and Lord willing, he'll stay healthy. As my counts fall over the next days I will basically be isolated, except for brief visits from family.
For now things are really going as well as can be expected. I am somewhat nervous about the final chemo drug, mylotarg, as it can cause significant liver damage, especially when used with younger post-transplant patients. The doctors have made a good case for using it, though, and say it has the best chance of getting me into remission. If I can reach remission, we will do a second transplant with another sibling donor. That is the what I'm racing for -- the ultimate goal and the only chance of a "cure."
Happy Birthday to my dad today.
Wednesday, June 27, 2007
Biopsy #9
The biopsy went well this morning. i requested the same meds as last time, and they really seem to help make it more bearable. They also took a DNA sample from my mouth and a skin biopsy as part of the study. I am really glad I was given an opportunity to participate in a study. So many others have gone before me and I finally feel like I can contribute something.
I'm still on antibiotics in an attempt to save my central line. The plan is to start chemo this afternoon. I have felt moments of peace -- just realizing that God has me exactly where I'm supposed to be right now, and His grace is always sufficient.
I'm still on antibiotics in an attempt to save my central line. The plan is to start chemo this afternoon. I have felt moments of peace -- just realizing that God has me exactly where I'm supposed to be right now, and His grace is always sufficient.
Tuesday, June 26, 2007
Tuesday evening update
I'll probably have a series of shorter, more frequent updates for the next few days.
As far as I know the test went well this afternoon on my heart and we'll be starting chemo tomorrow. It is a five day regimen with mylotarg on day eight. At this point it looks like we'll use all four drugs -- fludarabine, idarubicin, cytarabine (Ara-C) and mylotarg.
I am also scheduled for a bone marrow biopsy/aspiration in the morning. The resident asked me this evening if I would be willing to participate in a research project and bank cells for genetic mapping. I thought it would be a good opportunity to give something back, and then when another doctor came by later for rounds he made it seem like he wanted to do a biopsy one way or the other, so I can't say it's totally heroic or anything. They will be able to check my cytogenetics once again and make sure nothing has changed since my last biopsy. I think everyone familiar with this blog knows how I feel about biopsy -- please pray that it goes well.
And thank you, once again, for your faithfulness to pray. I feel like I am always throwing out prayer requests and few thanks -- I realize the gift it is and appreciate all of you so much.
As far as I know the test went well this afternoon on my heart and we'll be starting chemo tomorrow. It is a five day regimen with mylotarg on day eight. At this point it looks like we'll use all four drugs -- fludarabine, idarubicin, cytarabine (Ara-C) and mylotarg.
I am also scheduled for a bone marrow biopsy/aspiration in the morning. The resident asked me this evening if I would be willing to participate in a research project and bank cells for genetic mapping. I thought it would be a good opportunity to give something back, and then when another doctor came by later for rounds he made it seem like he wanted to do a biopsy one way or the other, so I can't say it's totally heroic or anything. They will be able to check my cytogenetics once again and make sure nothing has changed since my last biopsy. I think everyone familiar with this blog knows how I feel about biopsy -- please pray that it goes well.
And thank you, once again, for your faithfulness to pray. I feel like I am always throwing out prayer requests and few thanks -- I realize the gift it is and appreciate all of you so much.
A prisoner once again
Why is it that being admitted to the hospital feels like being imprisoned? Not that I've been to prison, but still...the similarities seem striking.
We met with my doctor this morning after consulting with multiple other hospitals and doctors. I was admitted around noon to the sixth floor and will begin chemo either tonight or tomorrow. We decided to do the FLAG therapy, and we're still debating about whether or not to use mylotarg along with it. (Leaning against it per advice from Sloan-Kettering and some other "big" institutions.) In the meantime I'm headed downstairs for a MUGGA test to make sure my heart can handle idarubacin and will most likely have my central line pulled and replaced.
It's hard to be here again, and there are a lot of emotions. My room is without much of a view, but thankfully there is a courtyard several floors down that I can gaze down upon, so it's not all brick walls staring back at me. I miss my Gary, but I am fighting for him.
Please pray for endurance.
We met with my doctor this morning after consulting with multiple other hospitals and doctors. I was admitted around noon to the sixth floor and will begin chemo either tonight or tomorrow. We decided to do the FLAG therapy, and we're still debating about whether or not to use mylotarg along with it. (Leaning against it per advice from Sloan-Kettering and some other "big" institutions.) In the meantime I'm headed downstairs for a MUGGA test to make sure my heart can handle idarubacin and will most likely have my central line pulled and replaced.
It's hard to be here again, and there are a lot of emotions. My room is without much of a view, but thankfully there is a courtyard several floors down that I can gaze down upon, so it's not all brick walls staring back at me. I miss my Gary, but I am fighting for him.
Please pray for endurance.
Monday, June 25, 2007
Update
I'm at Ellis today for labs and red cell transfusion. Counts today are:
WBC - 34.1
Hgb - 8.5
Hct - 24.9
Platelets - 40
Blasts - 81%
Abs Blasts - 28
Neuts - 3%
Abs Neuts - 1.02
I'll also be getting vancomycin today because it appears that my central line is infected. It's been very painful the past 24 hours to the point that I've taken dilautid. They almost decided to pull it today, but I just spoke to the doctor and they're going to let Barnes handle it. I am really upset about the idea of losing my central line. Having a new one placed means surgery and several days of pain, plus, I have built up enough scar tissue that I'm not sure if they can place a new one in my chest and the other alternate sites are less than ideal. I have an appointment with my doctor at Barnes tomorrow morning and may be admitted afterwards. Please pray that the Lord will protect me from infection (it will take a few days to get the cultures back to see what exactly is going on), that I will not react to the Vanc as is typical for me, and that my doctor will be open to a second transplant.
Thank you to everyone for your encouragement. Also, thanks to those who have given us contact information for other doctors/hospitals. I really want to pursue a second transplant and we're making calls today to see if other hospitals will be willing to work with me if my doctor still says no tomorrow. I know God holds the heart of the king and controls it as He wills.
WBC - 34.1
Hgb - 8.5
Hct - 24.9
Platelets - 40
Blasts - 81%
Abs Blasts - 28
Neuts - 3%
Abs Neuts - 1.02
I'll also be getting vancomycin today because it appears that my central line is infected. It's been very painful the past 24 hours to the point that I've taken dilautid. They almost decided to pull it today, but I just spoke to the doctor and they're going to let Barnes handle it. I am really upset about the idea of losing my central line. Having a new one placed means surgery and several days of pain, plus, I have built up enough scar tissue that I'm not sure if they can place a new one in my chest and the other alternate sites are less than ideal. I have an appointment with my doctor at Barnes tomorrow morning and may be admitted afterwards. Please pray that the Lord will protect me from infection (it will take a few days to get the cultures back to see what exactly is going on), that I will not react to the Vanc as is typical for me, and that my doctor will be open to a second transplant.
Thank you to everyone for your encouragement. Also, thanks to those who have given us contact information for other doctors/hospitals. I really want to pursue a second transplant and we're making calls today to see if other hospitals will be willing to work with me if my doctor still says no tomorrow. I know God holds the heart of the king and controls it as He wills.
Friday, June 22, 2007
The beginning of the end?
I wasn't sure how to title this post, as I think the end probably began a long time ago. But once again it seems we've hit what may prove to be the end of the road rather than a mere bend.
I have stopped responding to Decitabine, and my doctors at Ellis have basically said there is nothing more they can do for me. They recommended contacting my transplant doctor at Barnes to see what they could offer me. I don't qualify for any of the current clinical trials and though a second transplant was mentioned earlier in the week, my phone call with the doctor this evening was less than promising as he summed up a second transplant as the "height of medical futility." His recommendation was a type of FLAG treatment, which as some may remember was also recommended back in February. We chose not to go that route then, and I don't see why I would choose to go that route now. I was told that if I could achieve significant remission with FLAG (assuming I survive the drugs and still have enough bodily function to qualify -- which with these drugs is a long shot) they may consider a second transplant at that time. Given the fact that I have never acheived remission I feel they are basically trying to pacify me with a treatment that is basically a death certificate. Being told that if I am admitted I can expect to never leave the hospital isn't exactly encouraging.
For now the plan is to go to Ellis Monday morning for lab work and make as many phone calls as it takes to get as many second opinions as possible, and try to get in to see my local oncologist on Tuesday before going up to Barnes also on Tuesday, where we will discuss the options with my transplant doctor. He said I can plan to be admitted from the clinic -- I may take my walking papers and come home to die. Though, I am not naive enough to believe that death for me will be either at home or easy. This is when you sign the papers telling your family it's o.k. to pull the plug, because that's basically what you know it will come down to.
So, needless to say, we ask for your prayers, that someone will come up with something -- that the doctors may have a change of heart about a second transplant. I know it is a longshot, and I know it is a horrible, horrible procedure. I know that better than anyone. But I don't want to be told I'm out of options, and I don't want the only options presented to me to be ones that are merely a terrible way to die.
Storm heaven for us, please. We need all the wisdom God can give.
I have stopped responding to Decitabine, and my doctors at Ellis have basically said there is nothing more they can do for me. They recommended contacting my transplant doctor at Barnes to see what they could offer me. I don't qualify for any of the current clinical trials and though a second transplant was mentioned earlier in the week, my phone call with the doctor this evening was less than promising as he summed up a second transplant as the "height of medical futility." His recommendation was a type of FLAG treatment, which as some may remember was also recommended back in February. We chose not to go that route then, and I don't see why I would choose to go that route now. I was told that if I could achieve significant remission with FLAG (assuming I survive the drugs and still have enough bodily function to qualify -- which with these drugs is a long shot) they may consider a second transplant at that time. Given the fact that I have never acheived remission I feel they are basically trying to pacify me with a treatment that is basically a death certificate. Being told that if I am admitted I can expect to never leave the hospital isn't exactly encouraging.
For now the plan is to go to Ellis Monday morning for lab work and make as many phone calls as it takes to get as many second opinions as possible, and try to get in to see my local oncologist on Tuesday before going up to Barnes also on Tuesday, where we will discuss the options with my transplant doctor. He said I can plan to be admitted from the clinic -- I may take my walking papers and come home to die. Though, I am not naive enough to believe that death for me will be either at home or easy. This is when you sign the papers telling your family it's o.k. to pull the plug, because that's basically what you know it will come down to.
So, needless to say, we ask for your prayers, that someone will come up with something -- that the doctors may have a change of heart about a second transplant. I know it is a longshot, and I know it is a horrible, horrible procedure. I know that better than anyone. But I don't want to be told I'm out of options, and I don't want the only options presented to me to be ones that are merely a terrible way to die.
Storm heaven for us, please. We need all the wisdom God can give.
Tuesday, June 12, 2007
The Final DLI
From beginning to end...Daniel donating.
Pheresis machine
Frozen cells
Infusion
I'm sitting in one of the treatment rooms at Siteman Cancer Center, getting a unit of platelets and some fluids before they bring up the frozen cells in a little while. The view from this room is similar to the one I had while undergoing transplant, so it brings back a lot of memories. Last November they were finishing up the apartment building across the way and I spent many hours watching men on scaffolds several stories high doing the window trim and other little things to complete the building. Now when I look out I see patio furniture on the balconies, and various sized curtains on each window, reminders of time passed, reminders that I am still alive.
We came into today with a lot of concerns due to the trend my recent labs have taken. The doctor did a good job of calming our fears. Our continued prayer is that the chemo will continue to keep things in check (that the blast count will drop) and that this final large infusion of leukocytes will overcome the leukemia in my body. For now the plan is to continue with chemo again next month and as long as it proves effective, and I will also have a bone marrow biopsy/aspiration in a month. Not sure yet if we'll do that here at Siteman or locally at Ellis. I am tired of being a guinea pig at the teaching hospital, so the decision will be based primarily on who would be doing it at Ellis. I feel I've contributed enough to student education and I would just prefer to have someone who knows what they're doing and is proficient at it as I face the needles once again. The tenderness in my lower back (ichial crest to be specific) is constant, and I don't even care for pressure on the locations, so having it attacked once again is hard to accept. I know it is just the evil part of having leukemia. The doctor mentioned a few new drugs that may be an option for me if/when the Decitabine quits working. One is being used as a clinical trial here at Siteman, which I would qualify for. At this point the drug options I have left are all considered experimental so it can be a challenge to get insurance coverage for them. I am very thankful to Dr. Medlin and the Ellis social worker who managed to get Decitabine approved for me, as the out of pocket cost is over $20,000 per month. I realize insurance can make or break your survival, and so far our company has been exceptional, for which I am very thankful. I view it as another of the Lord's provisions on our behalf. We are not ruling out the possibility of a second transplant with my sister as donor, but that is definitely the worst case scenario.
As always, we ask that you pray that the DLI will do its job targeting the leukemic cells and not my body. Thank you for your continued prayer and support.
Pheresis machine
Frozen cells
Infusion
I'm sitting in one of the treatment rooms at Siteman Cancer Center, getting a unit of platelets and some fluids before they bring up the frozen cells in a little while. The view from this room is similar to the one I had while undergoing transplant, so it brings back a lot of memories. Last November they were finishing up the apartment building across the way and I spent many hours watching men on scaffolds several stories high doing the window trim and other little things to complete the building. Now when I look out I see patio furniture on the balconies, and various sized curtains on each window, reminders of time passed, reminders that I am still alive.
We came into today with a lot of concerns due to the trend my recent labs have taken. The doctor did a good job of calming our fears. Our continued prayer is that the chemo will continue to keep things in check (that the blast count will drop) and that this final large infusion of leukocytes will overcome the leukemia in my body. For now the plan is to continue with chemo again next month and as long as it proves effective, and I will also have a bone marrow biopsy/aspiration in a month. Not sure yet if we'll do that here at Siteman or locally at Ellis. I am tired of being a guinea pig at the teaching hospital, so the decision will be based primarily on who would be doing it at Ellis. I feel I've contributed enough to student education and I would just prefer to have someone who knows what they're doing and is proficient at it as I face the needles once again. The tenderness in my lower back (ichial crest to be specific) is constant, and I don't even care for pressure on the locations, so having it attacked once again is hard to accept. I know it is just the evil part of having leukemia. The doctor mentioned a few new drugs that may be an option for me if/when the Decitabine quits working. One is being used as a clinical trial here at Siteman, which I would qualify for. At this point the drug options I have left are all considered experimental so it can be a challenge to get insurance coverage for them. I am very thankful to Dr. Medlin and the Ellis social worker who managed to get Decitabine approved for me, as the out of pocket cost is over $20,000 per month. I realize insurance can make or break your survival, and so far our company has been exceptional, for which I am very thankful. I view it as another of the Lord's provisions on our behalf. We are not ruling out the possibility of a second transplant with my sister as donor, but that is definitely the worst case scenario.
As always, we ask that you pray that the DLI will do its job targeting the leukemic cells and not my body. Thank you for your continued prayer and support.
Thursday, June 07, 2007
Labs
Today's labs were trending downward, which indicates the chemo is doing its job. The blasts are still higher than I would like, but hopefully they will continue to drop over the next few weeks, along with the help from the final DLI.
Thanks for your prayers.
Thanks for your prayers.
Monday, June 04, 2007
Chemo Round Four
Our appointment with my primary oncologist went well last Wednesday. He was pleased with how things have been going. I'll meet with my transplant doctor prior to the DLI next Tuesday and we'll most likely schedule bone marrow biopsy/aspiration #9 and make plans regarding what the future holds as far as continuing chemo and a possible second transplant.
In the meantime, I'm not pleased with my labs today. My white count doubled and blasts jumped to 21%. I'm trying not to jump to conclusions, but suffice it to say it's never a good thing when that happens. Please pray that the chemo this week will be successful in knocking the blasts back down and that the final DLI on the 12th will be effective. And for my sanity until the next set of labs on Thursday.
All heavy laden acquainted with sorrow
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth
Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own
This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through
- Jars of Clay
In the meantime, I'm not pleased with my labs today. My white count doubled and blasts jumped to 21%. I'm trying not to jump to conclusions, but suffice it to say it's never a good thing when that happens. Please pray that the chemo this week will be successful in knocking the blasts back down and that the final DLI on the 12th will be effective. And for my sanity until the next set of labs on Thursday.
All heavy laden acquainted with sorrow
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth
Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own
This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through
- Jars of Clay
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