and not in a good way.
i've noticed more and more than when i walk up and down stairs and sometimes just when i'm sitting i feel like i can't take a full breath. i feel a bit like i'm not really getting enough air ever. it's a bizarre feeling.
dr. warlick recommends a chest x-ray. i have a call in to dr. babbitt to see if she can get that scheduled.
hoperfully we can get it done soon. perhaps even before i go to MN as the feeling is quite unpleasant.
Thursday, December 27, 2012
Wednesday, December 26, 2012
The face of leukemia
life is odd. yesterday my in laws and i got to chatting about leukemia and the public face that it has. it's an oddity, that i don't know exactly how to deal with sometimes.
the reality is that 90% of the people diagnosed every year with leukemia (all types) are adults.
there are LOTS of kinds of leukemia.
ALL: Acute lymphoblastic leukemia (the word acute here refers to how fast moving the leukemia is--acute is fast moving leukemia, chronic is slower). this is the most common childhood leukemia. but it also affects adults. 85% of children survive it, only 50% of adults do.
AML: Acute myelogenous leukemia. This is primarily an adult disease. only 40% of people survive it.
CML: Chronic myelogenous leukemia (My disease). almost exclusively an adult disease. currently it's pretty survivable--90% survival rates. children who get chronic forms of leukemia are far harder hit as i understand it.
CLL: Chronic lymphocytic leukemia. almost no children get this. 2/3rds of the people that get this are men. 75% survival rates (by the way all the survival rates are at 5 years, which in the case of chronic forms doesn't mean as much since the chronic leukemia types don't have a cure usually)
Hairy Cell Leukemia: extremely survivable (about 95-100% at 10 years) no known childhood cases. ever.
T-PLL: T-cell prolymphocytic leukemia, very rare and aggressive leukemia affecting adults. It's really hard to treat and the median survival isn't in years, it's in months.
there are more, but they are progressively more rare. so i'll stop there.
the point? the face of leukemia is a cute little kid, typically with no hair, and they are portrayed as dying. now, don't get me wrong, kids do die of leukemia. but the treatment for children is getting better and better, and by and large, it's survivable, if horrible when kids get it. adults on the other hand, not so much. look at AML up there. 40% survival rate at 5 years. until 10 years ago that was CML as well.
the issue that i have, is hard to explain. i totally get that cute kids make better plays for money. and i get that kids dying is horrible and hard and a waste. the problem i have is that so are adults dyeing. it's a horrible death. hard. it's a waste. and a huge portion of the population is shocked when i tell them i have leukemia. "do adults get that?" is the typical response. when i explain that actually leukemia is a disease that mostly affects men, over 55, they are further shocked.
i am not suggesting for a minute that we should stop trying to fix childhood leukemia. hell, childhood cancer. what need to be said tho, is this, cancer sucks. all of it. the children and the adults that have it need your help. and the reality unfortunately is that adults are dying more of leukemia than kids by a long shot. and i don't want to hear how i got to live out my life. i have kids that need me, a husband, a family, all that. adults are no different than kids. we have plans. we have wants and needs. and we have faces. how do we change the face of leukemia? do we need an ad campaign with my face, and my friends? how do we acknowledge that leukemia is mostly an adult disease without being told that we're insensitive to the kids? it's not that i want to erase their faces from my disease. it's that i want my face there too. a 45 year old woman with 3 kids and leukemia. and i'm struggling to survive it too.
the reality is that 90% of the people diagnosed every year with leukemia (all types) are adults.
there are LOTS of kinds of leukemia.
ALL: Acute lymphoblastic leukemia (the word acute here refers to how fast moving the leukemia is--acute is fast moving leukemia, chronic is slower). this is the most common childhood leukemia. but it also affects adults. 85% of children survive it, only 50% of adults do.
AML: Acute myelogenous leukemia. This is primarily an adult disease. only 40% of people survive it.
CML: Chronic myelogenous leukemia (My disease). almost exclusively an adult disease. currently it's pretty survivable--90% survival rates. children who get chronic forms of leukemia are far harder hit as i understand it.
CLL: Chronic lymphocytic leukemia. almost no children get this. 2/3rds of the people that get this are men. 75% survival rates (by the way all the survival rates are at 5 years, which in the case of chronic forms doesn't mean as much since the chronic leukemia types don't have a cure usually)
Hairy Cell Leukemia: extremely survivable (about 95-100% at 10 years) no known childhood cases. ever.
T-PLL: T-cell prolymphocytic leukemia, very rare and aggressive leukemia affecting adults. It's really hard to treat and the median survival isn't in years, it's in months.
there are more, but they are progressively more rare. so i'll stop there.
the point? the face of leukemia is a cute little kid, typically with no hair, and they are portrayed as dying. now, don't get me wrong, kids do die of leukemia. but the treatment for children is getting better and better, and by and large, it's survivable, if horrible when kids get it. adults on the other hand, not so much. look at AML up there. 40% survival rate at 5 years. until 10 years ago that was CML as well.
the issue that i have, is hard to explain. i totally get that cute kids make better plays for money. and i get that kids dying is horrible and hard and a waste. the problem i have is that so are adults dyeing. it's a horrible death. hard. it's a waste. and a huge portion of the population is shocked when i tell them i have leukemia. "do adults get that?" is the typical response. when i explain that actually leukemia is a disease that mostly affects men, over 55, they are further shocked.
i am not suggesting for a minute that we should stop trying to fix childhood leukemia. hell, childhood cancer. what need to be said tho, is this, cancer sucks. all of it. the children and the adults that have it need your help. and the reality unfortunately is that adults are dying more of leukemia than kids by a long shot. and i don't want to hear how i got to live out my life. i have kids that need me, a husband, a family, all that. adults are no different than kids. we have plans. we have wants and needs. and we have faces. how do we change the face of leukemia? do we need an ad campaign with my face, and my friends? how do we acknowledge that leukemia is mostly an adult disease without being told that we're insensitive to the kids? it's not that i want to erase their faces from my disease. it's that i want my face there too. a 45 year old woman with 3 kids and leukemia. and i'm struggling to survive it too.
Friday, December 14, 2012
Good news, and prayers
First, i'm praying for those victims of the school shooting in CT. i am thankful that i spent my morning watching my son's wonderful holiday concert, and not worrying about whether he was alive or not. the devastation of incidents like these are really beyond my comprehension. i hope you'll keep these people in your thoughts as well.
second, i had a quick call with my oncologist today. Dr. Warlick had all good things to discuss. she went to the ASH/hematology conference, and she came back with new information. In particular, there have been studies ongoing that take people with CML who have achieved the highest level of "remission" (i put the word remission in quotes because that's not really how we talk about CML) are removed from the TKI. a chunk of these people have not been off of their TKIs for as long as 5-7 years without a recurrence of symptoms. by this i mean that people who have achieved a zero level of Philadelphia chromosomes in the peripheral blood, and they continue after 5 years to have a zero level. apparently a slightly higher percentage of women have shown success in this.
the awesome part is that Dr. Warlick thinks it is reasonable to consider the possibility that if i could reach zero levels that i might be a candidate for this.
for those who know me well, they may already understand what i'm about to say, those of you don't may not be terribly surprised by this. I'm really goal oriented. i'm willing to do incredibly difficult things to get a good result. i started my own business. i've done many things that require this particular personality type. i willingly tolerate crappy, cruddy, and unpleasant things to get to a goal. so for me, the idea that there is a goal makes me feel more like i can continue on this road. indeed that i would be willing to take higher doses and deal with even worse side effects if the end result *might* be that in 4 years i could go off meds completely. i'm good at doing things with a purpose.
part of what has been truly difficult has been that i have been asked to simply take the meds with no real concept that tomorrow will be better. i take my meds and hope that tomorrow won't be worse most days. in the long term that is simply difficult. i feel like i'm missing out on half my life. but i would be willing to deal with more if i thought that it would give me back my life.
second, i had a quick call with my oncologist today. Dr. Warlick had all good things to discuss. she went to the ASH/hematology conference, and she came back with new information. In particular, there have been studies ongoing that take people with CML who have achieved the highest level of "remission" (i put the word remission in quotes because that's not really how we talk about CML) are removed from the TKI. a chunk of these people have not been off of their TKIs for as long as 5-7 years without a recurrence of symptoms. by this i mean that people who have achieved a zero level of Philadelphia chromosomes in the peripheral blood, and they continue after 5 years to have a zero level. apparently a slightly higher percentage of women have shown success in this.
the awesome part is that Dr. Warlick thinks it is reasonable to consider the possibility that if i could reach zero levels that i might be a candidate for this.
for those who know me well, they may already understand what i'm about to say, those of you don't may not be terribly surprised by this. I'm really goal oriented. i'm willing to do incredibly difficult things to get a good result. i started my own business. i've done many things that require this particular personality type. i willingly tolerate crappy, cruddy, and unpleasant things to get to a goal. so for me, the idea that there is a goal makes me feel more like i can continue on this road. indeed that i would be willing to take higher doses and deal with even worse side effects if the end result *might* be that in 4 years i could go off meds completely. i'm good at doing things with a purpose.
part of what has been truly difficult has been that i have been asked to simply take the meds with no real concept that tomorrow will be better. i take my meds and hope that tomorrow won't be worse most days. in the long term that is simply difficult. i feel like i'm missing out on half my life. but i would be willing to deal with more if i thought that it would give me back my life.
Wednesday, December 12, 2012
the interesting stuff on the internetz
I spend lots of time researching CML. i do this because i'm a bit obsessive about research. i have a need to know. i imagine that's how i ended up as a reference librarian.
so when i wander onto websites where people state that they used interferon (the only real treatment for CML before gleevec) instead of gleevec, and it damaged them, then when they lost remission they went on gleevec and then decided that juicing and eating organic and refusing to pump their own gas will allow them to stop taking gleevec. and they claim to being an RN. it makes me wonder whether they're just in such need of attention that they need to lie about such things, or are they really stupid enough to believe that it will work.
and then on another site i encounter a guy who basically told another CML patient that they should reduce their dosage of TKI without consulting with their oncologist.
if you're here on my blog looking for advice: go to an oncologist/hematologist. if you feel like they aren't treating you appropriately get a second opinion. or a third. but don't listen to what i say as more than my own anecdotal information. what works for me may not work for you. likely will not. we all have different bodies and what works for one won't always work for another.
BUT: juicing isn't going to cure anyone's CML. right now medication or bone marrow transplant/stem cell transplant is the only safe treatment (ok--there is an interesting new treatment on the horizon that may replace BMT/SCT) but in general you get my point. go to an oncologist. go to 10 if you need to but don't let anyone convince you that pumping gas is what caused your CML and stopping doing it will fix you.
HUGS...
so when i wander onto websites where people state that they used interferon (the only real treatment for CML before gleevec) instead of gleevec, and it damaged them, then when they lost remission they went on gleevec and then decided that juicing and eating organic and refusing to pump their own gas will allow them to stop taking gleevec. and they claim to being an RN. it makes me wonder whether they're just in such need of attention that they need to lie about such things, or are they really stupid enough to believe that it will work.
and then on another site i encounter a guy who basically told another CML patient that they should reduce their dosage of TKI without consulting with their oncologist.
if you're here on my blog looking for advice: go to an oncologist/hematologist. if you feel like they aren't treating you appropriately get a second opinion. or a third. but don't listen to what i say as more than my own anecdotal information. what works for me may not work for you. likely will not. we all have different bodies and what works for one won't always work for another.
BUT: juicing isn't going to cure anyone's CML. right now medication or bone marrow transplant/stem cell transplant is the only safe treatment (ok--there is an interesting new treatment on the horizon that may replace BMT/SCT) but in general you get my point. go to an oncologist. go to 10 if you need to but don't let anyone convince you that pumping gas is what caused your CML and stopping doing it will fix you.
HUGS...
Saturday, December 8, 2012
oral mucositis
so, one of my major struggles has been sores inside my mouth, particularly on my tongue. they cycle, sometimes they are worse, then they get better, but they are almost always present. and always painful.
gross, right? this is what my tongue currently looks like. i've tried everything offered so far, nothing really helps much. they are persistent and really lousy.
today is not a good day. :(
today is not a good day. :(
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