This post is regarding my specific treatment plan for my AML. When it comes to AML, there are pretty straightforward options, chemo or bone marrow transplant. This post covers why I am going on with chemo and why others would be on to a marrow transplant by now.
I had a great conversation with Dr. Kelly McCaul from Avera McKennan prior to beginning round 3 of my chemo, he helped lay everything out for me.
First let me put a little disclaimer on the statistics I will use through this post. The median age for AML patients is around 65, the younger a patient is, the better the response. So keep in mind that these statistics include all AML patients. Also, AML is rare, the studies have been quite small and can take years to get collect and process. Often current treatments are well ahead of the studies.
With the chemo regimen we are on, there is a 33% chance that it will eliminate the cancer and that I will be "cured". Cured means that the cancer does not return within 5 years. That leaves a 66% chance that I will relapse within that time. AML typically relapses quickly, within the first year or so, so each year that passes greatly reduces my chances or relapse. For some patients, the chemo doesn't achieve remission. I was in remission after my first treatment, which, along with my age (32), I like to think improves my odds. I also did not have any adverse reactions to the treatments themselves, no rejection of blood or platelet transfusions.
Before I move on to the transplants, I need to provide some background on cytogenetics. Cytogenetics is used as a guideline to predict how likely a specific patient is to relapse. With technology what it is today, doctors can look at the genetic makeup of the leukemia cell itself. There are specific abnormalities that indicate a good, standard or poor prognosis. I, along with half of AML patients fall within the standard risk group. Generally put, this puts my 5 year survival and relapse rate at around 50%. (Remember what I said about stats before)
On to bone marrow transplants...again I need to provide some background before I can tell you why I am not doing a transplant at this time.
A bone marrow transplant is basically a stem cell transplant from the marrow of a healthy donor. Stem cells are basically blank cells which can become any type of cell. In the bone marrow these stem cells become red blood cells, white blood cells, platelets and so on. My leukemia is a result of these stem cells being released as something called "blasts". Essentially they are immature cells that have not become what they are supposed to. Over time, they replace the healthy cell types that I need to live. The A in AML stands for acute, so with AML, it can be fatal in a matter of weeks or a few months if untreated.
With a bone marrow transplant, the intent is that the donor immune system becomes mine and attacks my "foreign" cancer cells. The risk is that this new donor immune system detects my body as also being foreign and attacks it. This is called Graft vs Host disease. Bone marrow transplants are the only transplants where this is a risk. With other types of transplants the scenario is usually the other way around: the host body (immune system) attacks the donor tissue. So that's the the thing with bone marrow transplants, Graft vs Host disease is usually fatal.
The best option is a transplant from a related donor, this usually has to be a sibling. Why a sibling and not a parent or child? Since we get half our genetic makeup from each of our parents, only our siblings will have a chance at the same genetic background. Same with my kids, only half of their genetic traits come from me.
Now, I have to throw a shout out to Mr. Doug Meyer, my high school Biology\Science\Physics teacher. Remember Gregor Mendel's experiments with pea plants, and dominant and recessive traits with that grid of four squares labeled: PP, Pb, Pp, pp..... anyone? Doesn't really, matter. During my conversation with Dr. Kelly, I was able to comprehend and dare I say impress the Doc when I guessed that Jessica (my sister) probably only had a 25% chance of being a bone marrow match to me. Thanks to Mr. Meyer, not only did I get that easy A in college Biology, but much of what has been going on inside of me has been much easier to comprehend.
So why ramble on with all this genetic stuff? It all comes down to assessing the risk of a bone marrow transplant. Had my sister been a match, the likelihood of graft vs host disease or infection resulting in mortality would be around 20%. Getting marrow cells from a non related donor places the mortality risk at about 50%.
So considering my cytogenetics put me in the standard relapse catagory: if my sister was a match, the 20% mortality risk vs the long term prognosis of getting a transplant from a related donor, would have put us on the path of getting a transplant. However, she is not a match. So weighing the 33% chance that the chemo will cure me, vs the 50% mortality risk of a transplant from a non related donor, we are going with a chemo only treatment for now. My age and response to the chemo so far were also considered. Should I relapse, bone marrow transplant will be considered at that time. The way I figure it, the more time we can buy, the more opportunity for advancements in both AML and bone marrow transplants, if needed at all.
There are a few general things that I also want to note related to my diagnosis.
My AML type is M0 (M-zero) indicating that I have minimally differentiated AML. Not sure what that really means, but I have not been told that the prognosis is any different from any other AML. AML itself is rare, roughly 10,000 cases are diagnosed in a year in the US (roughly 1.2 % of cancer cases). Only 2-3 % of AML cases are my type. By my math, there are about 250 cases of my kind of AML diagnosed in the US each year.
My AML exhibited in a couple unusual ways (though not unheard of). Often white blood counts are high, mine were very low. The hip and joint pain and lymph node swelling was a bit unusual as well. Also my initial bone marrow biopsy indicated that the marrow was severely necrotic (i.e the tissue was dead). Though unusual, there is nothing here to indicate that the treatment or prognosis should be any different. In fact my marrow was determined to be healthy after the first round of chemo treatment.
Ever considered being put on the bone marrow donor registry?
Thursday, January 6, 2011
AML:
Acute Myeloid Leukemia - Catching up
This post is just to catch up on where we are with my AML diagnosis and treatment.
On Sept 6th, 2010 I woke with terrible low back and hip pain. We had just been to the SD state fair the day before, this could have been just me having overdone it, but I had never experienced pain like this. We were at my parent's farm, a long way from any emergency room.
So I crawled... yes crawled to our van and we booked it to Sioux Falls. Managed to find a Chiropractor that was available. (it was Labor day). Had a couple of treatments, not much improvement. Switch to my normal Chiropractor (Dr. Rick Odland) when he was available. He treated me, but noticed things were not right and referred me to an orthopedist @ Sanford Hospital. Dr. Odland's quick referral probably saved my life.
I had a MRI which detected that the bone marrow in by lower back (spine) was not right. I had blood work done and was then referred to an oncologist @ Sanford. At this time I had a lymph node removed from my neck, leaving a nice scar. (all my lymph nodes were swollen, you should have seen my tonsils) I also had a bone marrow biopsy. OK, not rocket surgery here, I figured out they were looking for looking for cancer. I was expecting something more the lines of an infection.
This all took place from Sept 6 -17th. I had a work Trip to Dallas the 20th-22nd. I was still in significant pain, but went anyway. I was barely walking, sitting was uncomfortable. Even the heavy duty pain killers I had didn't make much difference. I fulfilled my work obligations and we did eventually get the Texas Rangers project. I had some great coworkers (Sarah, Aaron, Mark and Tony) looking out for me.
The next day, Sept 23rd, I had my doctors appointment. I received my AML diagnosis at 9:30am and was in the hospital at 10:30. Evidently my bone marrow sample had been so necrotic that it and the lymph node were sent to the Mayo Clinic to confirm the diagnosis.
At this point I learned that my immune system was so compromised that the doctor told me I was a week or so from dieing from even a minor infection. Here I am flying around on a cramped airplane with no immune system. So began my first round of chemo.
My induction chemo consisted of 3 days of daunorubicin and 7 days of cytarabine treatment. Prior to entering the hospital I had lost 20 pounds. First I had a Hickman port inserted so the chemo and meds could be administered. After my chemo started kicking in, I started running fevers. I'd get to 103, get a huge dose of Tylenol, my fever would break after about 4 hours and the cycle would start again. I was getting as much Tylenol as they could give in a day. I also had terrible heartburn which eliminated my appetite. this went on for almost 2 weeks.
Lots of broad spectrum antibiotics where given, I now had "Infectious Disease" doctors working on me as well. Come to find out, My Hickman had become infected. I was positive for MRSA as well as Aspergillus (a fungal infection in my lungs and liver). Both are very nasty infections. The MRSA was treated and under control very quickly. I was treated for the Aspergillus for almost 3 months.
Once the docs identified the infections, I the fevers ended. In the mean time, my blood counts started coming back. It was October 10th when my ANC (ability to fight infection) increased from 0 to 8. An ANC of 1500 means you can fight infections on your own, when it climbs back to 500, they let out of the hospital. Was a very emotional day to see progress. Unfortunately my fevers kept me in even as my ANC climbed. The fevers ended friday the 15th. At that time my blood work was almost back to normal. Best news was that my recent bone marrow biopsy indicated complete remission. I was sent home early the following week.
In all I had lost over 40 pounds. I was quite weak going home. But started getting back to myself over about two weeks. Round 2 of chemo would be Nov 9th. It was supposed to be a week earlier, but I got the best cold I ever had. Because of the delay, I was able to be present for my son Jonah's birth.
My notes from round 2 of Chemo will be short. I was in from November 9th to December 3rd. Dr Dirabi (oncologist) decided to run the same induction regimen again. This time I only had one day of fevers. Otherwise I felt good the whole time. Andrea brought Godfather pizza & Chinese for me several times. I missed Thanksgiving with the family, but at least I had the promise I'd be home for Christmas.
Round 3 of Chemo started Jan 5 2011. This time it is consolidation chemo. high doses of cytarabine every other day for 5 days. My body is feeling the higher dose after one day, but I still feel pretty good.
Before I wrap up, just a few notes about the first few months of dealing with this.
I was pretty out of it my first treatment, but at other times I've been able to be online, read and spend a fair amount of time playing Xbox. I tire of TV quickly, but between the food network and foodnetwork.com I planned out some great meals for the holidays.
My family and friends have been amazing. keeping up with the emails, and letters has been a wonderful distraction. My close friends at work made a huge (4 foot high card) out of plywood, a huge Chuck Norris on the front, I will treasure this for a long time. Andrea's Grandma, Lovern, has stayed at the house to help Andrea with the kids. We received so many cards and gifts. The staff and nurses of Sanford 6000 level adopted our family for Christmas. We were so overwhelmed by how much they sent to our kids... I'll probably do a separate post on that.
With so much family in Sioux falls, I think I am on the prayer chain at almost every church here. Our extended family has also made sure to muster up prayers from all over. I am so grateful for this...I believe it makes a huge difference.
I am sure I'll edit this to add more as I think of what I missed.
The final thought I want to include is how amazing my wife Andrea has been through this. I am so lucky to have married up and to have such a wonderful family (mine, hers...ours).
On Sept 6th, 2010 I woke with terrible low back and hip pain. We had just been to the SD state fair the day before, this could have been just me having overdone it, but I had never experienced pain like this. We were at my parent's farm, a long way from any emergency room.
So I crawled... yes crawled to our van and we booked it to Sioux Falls. Managed to find a Chiropractor that was available. (it was Labor day). Had a couple of treatments, not much improvement. Switch to my normal Chiropractor (Dr. Rick Odland) when he was available. He treated me, but noticed things were not right and referred me to an orthopedist @ Sanford Hospital. Dr. Odland's quick referral probably saved my life.
I had a MRI which detected that the bone marrow in by lower back (spine) was not right. I had blood work done and was then referred to an oncologist @ Sanford. At this time I had a lymph node removed from my neck, leaving a nice scar. (all my lymph nodes were swollen, you should have seen my tonsils) I also had a bone marrow biopsy. OK, not rocket surgery here, I figured out they were looking for looking for cancer. I was expecting something more the lines of an infection.
This all took place from Sept 6 -17th. I had a work Trip to Dallas the 20th-22nd. I was still in significant pain, but went anyway. I was barely walking, sitting was uncomfortable. Even the heavy duty pain killers I had didn't make much difference. I fulfilled my work obligations and we did eventually get the Texas Rangers project. I had some great coworkers (Sarah, Aaron, Mark and Tony) looking out for me.
The next day, Sept 23rd, I had my doctors appointment. I received my AML diagnosis at 9:30am and was in the hospital at 10:30. Evidently my bone marrow sample had been so necrotic that it and the lymph node were sent to the Mayo Clinic to confirm the diagnosis.
At this point I learned that my immune system was so compromised that the doctor told me I was a week or so from dieing from even a minor infection. Here I am flying around on a cramped airplane with no immune system. So began my first round of chemo.
My induction chemo consisted of 3 days of daunorubicin and 7 days of cytarabine treatment. Prior to entering the hospital I had lost 20 pounds. First I had a Hickman port inserted so the chemo and meds could be administered. After my chemo started kicking in, I started running fevers. I'd get to 103, get a huge dose of Tylenol, my fever would break after about 4 hours and the cycle would start again. I was getting as much Tylenol as they could give in a day. I also had terrible heartburn which eliminated my appetite. this went on for almost 2 weeks.
Lots of broad spectrum antibiotics where given, I now had "Infectious Disease" doctors working on me as well. Come to find out, My Hickman had become infected. I was positive for MRSA as well as Aspergillus (a fungal infection in my lungs and liver). Both are very nasty infections. The MRSA was treated and under control very quickly. I was treated for the Aspergillus for almost 3 months.
Once the docs identified the infections, I the fevers ended. In the mean time, my blood counts started coming back. It was October 10th when my ANC (ability to fight infection) increased from 0 to 8. An ANC of 1500 means you can fight infections on your own, when it climbs back to 500, they let out of the hospital. Was a very emotional day to see progress. Unfortunately my fevers kept me in even as my ANC climbed. The fevers ended friday the 15th. At that time my blood work was almost back to normal. Best news was that my recent bone marrow biopsy indicated complete remission. I was sent home early the following week.
In all I had lost over 40 pounds. I was quite weak going home. But started getting back to myself over about two weeks. Round 2 of chemo would be Nov 9th. It was supposed to be a week earlier, but I got the best cold I ever had. Because of the delay, I was able to be present for my son Jonah's birth.
My notes from round 2 of Chemo will be short. I was in from November 9th to December 3rd. Dr Dirabi (oncologist) decided to run the same induction regimen again. This time I only had one day of fevers. Otherwise I felt good the whole time. Andrea brought Godfather pizza & Chinese for me several times. I missed Thanksgiving with the family, but at least I had the promise I'd be home for Christmas.
Round 3 of Chemo started Jan 5 2011. This time it is consolidation chemo. high doses of cytarabine every other day for 5 days. My body is feeling the higher dose after one day, but I still feel pretty good.
Before I wrap up, just a few notes about the first few months of dealing with this.
I was pretty out of it my first treatment, but at other times I've been able to be online, read and spend a fair amount of time playing Xbox. I tire of TV quickly, but between the food network and foodnetwork.com I planned out some great meals for the holidays.
My family and friends have been amazing. keeping up with the emails, and letters has been a wonderful distraction. My close friends at work made a huge (4 foot high card) out of plywood, a huge Chuck Norris on the front, I will treasure this for a long time. Andrea's Grandma, Lovern, has stayed at the house to help Andrea with the kids. We received so many cards and gifts. The staff and nurses of Sanford 6000 level adopted our family for Christmas. We were so overwhelmed by how much they sent to our kids... I'll probably do a separate post on that.
With so much family in Sioux falls, I think I am on the prayer chain at almost every church here. Our extended family has also made sure to muster up prayers from all over. I am so grateful for this...I believe it makes a huge difference.
I am sure I'll edit this to add more as I think of what I missed.
The final thought I want to include is how amazing my wife Andrea has been through this. I am so lucky to have married up and to have such a wonderful family (mine, hers...ours).
Wednesday, January 5, 2011
New Year, New Blog
I have been meaning to do this for quite some time. I imagine much of what I record here will be fairly mundane, but here's what I am going for.....
I've always wondered about life when my grandparents were growing up, I hope I can start making a record for my 4 kids and eventual grandkids (and so on). Should I get hit by a bus, or perhaps contract some life threatening health condition (I have high cholestorol for example). Perhaps this blog would be a bit of a way for my descendants to get to know me. Jessica (sister) does the family history and pictures thing, but as people look at our family tree the consensus will certainly be that I am the most interesting family member (and tallest --> which probably goes hand in hand)
I have been able to travel to some cool places as well. Germany (Vacation), Hawaii (5yr anniversary), many great cities for work @ Daktronics. I wish I had a better record of some of those places. Truth is I started this blog several times since blogs came into being, but I've had distractions that never let me stick with it. Leukemia has a way of changing perspectives, as well as providing an immense amount of free time.
Since I mentioned it, I also feel the need to have a ongoing log of what I am going through with my Leukemia (AML). Facebook is fine for letting people know what is up, but I hope to create more of a running log of the events. I pray that myself or someone I know never have to go through this again. I wish I could reference some of my experience from my prior 2 treatments.
Cooking\Food has been something I have enjoyed, which is obvious considering my expanding waist line. Love of food can also be attributed to genetics. You'll see some things like that from time to time. In fact, I remember most of the places I visit by the food there. I've recently fried up some killer donuts and made probably the best rack of baby back ribs I have ever had, and yes I have had ribs in KC (You'll find I don't mind patting myself on the back).
This whole thing has been inspired by a coworker and friend (Bo) to finally get this done. Bo recently quit his job at Dak and is making plans to sail around the world (sailingbo.com). It's on his bucket list. Creating a bucket list for me at this point seems to be tempting the fates, so I'll hold off a bit on that one. I like hearing how others go about life, and I get a kick out of the things he posts.
I'll wrap it up for now... What's the #1 thing on your bucket list...ok, what are you waiting for?
I've always wondered about life when my grandparents were growing up, I hope I can start making a record for my 4 kids and eventual grandkids (and so on). Should I get hit by a bus, or perhaps contract some life threatening health condition (I have high cholestorol for example). Perhaps this blog would be a bit of a way for my descendants to get to know me. Jessica (sister) does the family history and pictures thing, but as people look at our family tree the consensus will certainly be that I am the most interesting family member (and tallest --> which probably goes hand in hand)
I have been able to travel to some cool places as well. Germany (Vacation), Hawaii (5yr anniversary), many great cities for work @ Daktronics. I wish I had a better record of some of those places. Truth is I started this blog several times since blogs came into being, but I've had distractions that never let me stick with it. Leukemia has a way of changing perspectives, as well as providing an immense amount of free time.
Since I mentioned it, I also feel the need to have a ongoing log of what I am going through with my Leukemia (AML). Facebook is fine for letting people know what is up, but I hope to create more of a running log of the events. I pray that myself or someone I know never have to go through this again. I wish I could reference some of my experience from my prior 2 treatments.
Cooking\Food has been something I have enjoyed, which is obvious considering my expanding waist line. Love of food can also be attributed to genetics. You'll see some things like that from time to time. In fact, I remember most of the places I visit by the food there. I've recently fried up some killer donuts and made probably the best rack of baby back ribs I have ever had, and yes I have had ribs in KC (You'll find I don't mind patting myself on the back).
This whole thing has been inspired by a coworker and friend (Bo) to finally get this done. Bo recently quit his job at Dak and is making plans to sail around the world (sailingbo.com). It's on his bucket list. Creating a bucket list for me at this point seems to be tempting the fates, so I'll hold off a bit on that one. I like hearing how others go about life, and I get a kick out of the things he posts.
I'll wrap it up for now... What's the #1 thing on your bucket list...ok, what are you waiting for?
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