to take gleevec or take Tasigna

well, after lots of discussion and thought on my part and explanations from several doctors, i've decided at least for the moment to stay on gleevec. this is for several reasons. first my side-effects other than edema and mouth sores and occasional intestinal issues seem to be mostly cleared up. B. gleevec seems to be working fine. my test results are perfectly on target. Drei. Tasigna is really inconvenient to take. by inconvenient i mean this: tasigna is taken twice a day, at approximately 12 hours apart. it must NOT be taken with food. this means that it must be taken 2 hours after eating and then wait an hour to eat.

i considered the possibilities, and this type of schedule is darned inconvenient. now, if the gleevec were to quit working or quit working as well, it would be different. but given that it is, thus far, working on schedule, and the low platelet count seems to have gone away. my most recent CBC shows that my platelets are easing back up to close to normal levels as are my white blood cells, and everything else is already actually at normal.

at any rate, things are going well, and largely uneventfully, so i'm carrying on until next month when we'll do another test to see how well the gleevec is working. it will show how many mutational cells are left. if that is good, i'll continue on gleevec, if it is not, or i have more events of low platelets or low neutrophils, i'll deal with that when it happens. it'll probably mean switching, because i'm not sure what other choice there'll be.

OH: and i don't have another blood draw for a MONTH. a whole month, no sticks. unless i start seeing lots of bruises, then i'll call and well schedule one. HURRAH!

hurrah for strep?

yes, it turned out to be strep. hurrah? yes, because mono would be so much worse. i'm on a broad spectrum antibiotic and feeling supremely better. thank goodness.

i've pretty much quit taking the diuretic i was on. i'm still a bit puffy in the morning and probably retaining water all day, but  feel better when i don't take it, so....

my tongue still has some not fun sores. ugh.

and i still need to lose weight. erg. i need to get out and move more. with Ahri. altho she has decided she's far more my husband's dog than mine. it's a little sad for me. she curls up at his feet, sleeps on his lap. stupid to feel  jealous, but i sort of do. oh well. it is what it is. life is not fair. i'm getting used to that.

what a pain in the neck

so, i went for a blood draw and short appointment with dr robinson about my neck/lymph node in my neck.

so here's how it went. the lady doing the blood draw missed my vein the first time. i don't begrudge her that--it's not usual at all. then as she says "i'm not going to start digging around in there" she starts digging around in there. if it hadn't hurt so much it'd have been funny. so i said "yes, please just start over, i'd rather deal with a second needle stick than the digging". then she started over. next stick hit on the money--and she drew out blood. she did the one tube, then she had some blood left and she tossed it.

i go in for my appt. and dr robinson wants more tests. of course. so i have to go back for more blood draw. erg. another stick. and a throat swab to check if i have strep. erg. the usual lab lady always draws extra blood in case they order another lab after, this one doesn't. sadness.

anyway, in short, i'm on antibiotics, hopefully it's something that will respond, because my neck hurts like a son-of-a-gun, and in the meantime there is nothing to do but wait.

it's been too long

I'm a bad blogger. I tend to blog a lot, and then i lose it, and run away for a while. so, what's happened in the meantime...

my SCA life is getting very involved what with being put on vigil and planning for Quest. i've got lots of work to do.

my mouth is a mess and has been for several weeks. today my neck is seriously swollen up and it hurts to turn my neck. dr robinson is seeing me on wednesday to see if i have an infection. i'm hoping he'll give me some sort of antibiotics, because this sucks. 

there's a leukemia specialist in cheyenne wyoming that i can go see. it's only about 4 hours away. he's apparently a world known leukemia guy. 

my platelet count was back up to 92 last wednesday. :) 

things at the shop are a bit slow but otherwise good.

of blood draws and ceiling wax and cabbages and kings

first appointment with dr robinson since seeing dr boles today.

as an aside, dr boles' clinic does not allow him to take on patient's primary care that do not live where he can do blood draws. so, he is going to be a consultant, essentially. advising me and dr robinson.....

anyway, dr robinson asked about what dr boles recommendations were. it was interesting. i told him that dr boles thought i should be a different medication. he asked about how strong this recommendation was and i told him that dr boles said that he would never have put me on gleevec to begin with and given all the side effects (most particularly the thrombocytopenia) that he'd definitely put me on a different medication now.

dr robinson agreed that we'd change meds without really any conversation. i think it was likely helped by the fact that my platelet count is dropping again. it's down to 72 today. below 50 and i'll be on another drug holiday. i'm guessing that'll be a week. probably no more. if not, then in 3 weeks when i run out of gleevec we'll be switching. otherwise, when i resume from a drug holiday it'll be the new meds.

current plan: try Tasigna.

something to keep my feet warm.

i wanted something to keep my feet warm. they're always cold. i also needed someone to keep me company when i don't feel like moving. and someone to get me moving.

north carolina

i'm not completely certain exactly how to write this blog. so much to include, no idea how to tell the story. at any rate, here goes....

I had a great time in NC to begin with. we visited yarn shops and fabric stores and of course a hematologist. 

dr boles is young to begin with. he's one of those lucky people who looks younger than they really are in addition, so it was interesting. he looked about 23. maybe. but when he started talking all my misgivings went out the window. he was very knowledgeable. he explained more about my disease in the first 20 minutes than dr robinson has told me in 4.5 months. some was information i had already gleaned from the internet. other information was new. 

the good news? i'm doing well. i have reached the first of three stages of "remission/response". it is called  Complete Hematologic Remission. The goal is to reach this stage upon 3 months on Gleevec. what it means is that my spleen has returned to normal size and all my blood counts have "normalized".  I'm not sure i understand how the thrombocytopenia of December affects this, but currently my counts are completely normal. 

there are two other stages. Complete Cytogenetic Remission and  Major Molecular Remission. These two further stages mark further returns to normal. The second level,  CCyR, is hoped to be seen at 12 months, and third, MMR, should hopefully occur around 18 months. 

what's important to consider is this: the current belief is that the faster one reaches these milestones, the better outcomes one has. the result that is aimed for is Progression Free Survival. (ie: the medication does it's work, and not only is one still alive after 5 or 10 or 70 years, but the disease has not progressed from chronic stage). Currently this is what can be done, the medication keeps CML in a constant chronic stage--ie: no significant symptoms. and right now, i'm on the right road....

from my perspective the only problem is quality of life at this point. i'm healthy, in terms of CML. i am not seeing any of the various symptoms of CML and indeed i'm right on target with treatment. the only question then is all the side effects from the gleevec. 

what else did dr boles say? he said that if i were his patient (i'll address this later) he'd like to see me on one of the second generation TKIs. this is because they work more quickly, and the best predictor of progression-free survival is how quickly MMR is reached. we'll need to work on that. 

this is most of what was discussion on monday.... i'll post more about the meeting on friday later....