BeenHereBefore 1,359 Posted April 17 Good to hear and prayers. Share this post Link to post Share on other sites
TheNewGirl 1,068 Posted April 17 Sounds like good news MLCKAA!!! Continued good thoughts coming your way. 1 Share this post Link to post Share on other sites
patweisers44 710 Posted April 17 Keep fighting the good fight. Love this positive update. 1 Share this post Link to post Share on other sites
MLCKAA 421 Posted April 18 Bloodwork came back pretty bad today. Numbers dropped over 90%. We’re at the cancer center right now (this is a blood disorder, not cancer) and she’s in the transfusion room getting her treatment. ~SIGH~ 3 Share this post Link to post Share on other sites
TheNewGirl 1,068 Posted April 18 6 minutes ago, MLCKAA said: Bloodwork came back pretty bad today. Numbers dropped over 90%. We’re at the cancer center right now (this is a blood disorder, not cancer) and she’s in the transfusion room getting her treatment. ~SIGH~ Sending you a lot of ((hugs)) and good thoughts right now. Share this post Link to post Share on other sites
Hardcore troubadour 12,951 Posted April 18 Good thoughts your way. Best of luck. Share this post Link to post Share on other sites
Strike 4,095 Posted April 18 Sorry man. Hope things work out. Share this post Link to post Share on other sites
jerryskids 5,414 Posted April 19 More prayers sent. Hope things are getting better. Share this post Link to post Share on other sites
MLCKAA 421 Posted May 3 Last 2 rounds of bloodwork have been really promising. Numbers are very good. Only took 1 dose of the wonder drug to get things started. The real question is if these levels maintain or not, but we’re feeling super optimistic right now! 7 1 Share this post Link to post Share on other sites
Strike 4,095 Posted May 3 3 minutes ago, MLCKAA said: Last 2 rounds of bloodwork have been really promising. Numbers are very good. Only took 1 dose of the wonder drug to get things started. The real question is if these levels maintain or not, but we’re feeling super optimistic right now! Thanks for the update. Glad it's going well so far. Share this post Link to post Share on other sites
Bill E. 676 Posted May 3 So sorry to hear you are going through this. Hope the new treatment works. Prayers for all of you. Share this post Link to post Share on other sites
BeachGuy23 590 Posted May 3 Prayers and good thoughts coming your way boyo. 1 Share this post Link to post Share on other sites
MikeMatt 16 Posted May 3 Let’s go with the good numbers !!! 1 Share this post Link to post Share on other sites
Bert 1,109 Posted May 3 12 hours ago, MLCKAA said: Last 2 rounds of bloodwork have been really promising. Numbers are very good. Only took 1 dose of the wonder drug to get things started. The real question is if these levels maintain or not, but we’re feeling super optimistic right now! Awesome! Wishing you and your wife all the best! Share this post Link to post Share on other sites
tubby_mcgee 691 Posted May 3 On 4/17/2024 at 9:39 AM, MLCKAA said: The nice thing here is that the hematologist has told us that if she doesn’t improve and maintain, he’s going right to the miracle drug. No fkking around. Just wants to try this first-line so that the miracle drug can be reserved for the future in case sh*t ever gets completely sideways. Apparently, with her disorder, there’s data that some patients only respond to a treatment once and then it’s never effective for them again. that she and you and your family are going through this. Prayers So this "miracle drug" - is it already approved by FDA? Is it "experimental" and you got approval, etc? As far as "only respond once then it's never effective again" --- I guess, what I'm wondering, what is the definition of "respond" here. What if she "responds" to it by never having symptoms again? And if "respond" means you feel better for 3 days and then symptoms come back, well what's the difference on whether you use that drug now or later? Share this post Link to post Share on other sites
MLCKAA 421 Posted May 3 1 hour ago, tubby_mcgee said: that she and you and your family are going through this. Prayers So this "miracle drug" - is it already approved by FDA? Is it "experimental" and you got approval, etc? As far as "only respond once then it's never effective again" --- I guess, what I'm wondering, what is the definition of "respond" here. What if she "responds" to it by never having symptoms again? And if "respond" means you feel better for 3 days and then symptoms come back, well what's the difference on whether you use that drug now or later? Thanks for the questions! The drug is fda approved. When she was diagnosed 2013 it had just been approved shortly before. Her hematologist was involved in trials and he and his colleagues had theories about alternative uses for it. Well, not really alternative uses but non-label ways of dosing it to generate slightly different results. It’s fascinating stuff. The beauty of having a university research hospital 20 minutes away! RE: only responding once… When she was diagnosed, they gave her steroids (Prednisone). That worked. 14 days later, it wasn’t working anymore. Numbers fell. So, they gave her steroids again and nothing happened. Then they gave her immune globulin. Numbers jumped up. 3 days later they fell back. Gave her the IG again, nothing happened. Current treatment seems to be working a second time. Doctor told us he’s engaged in a long term study on it. He believes that for some patients, the right dosage will disable the immune system’s destruction response. He’s studying to determine what variables exist in the patients who respond to it that way. I try to find just the right level of ambiguity on here because some of us are such utter dikkholes. I realize I’ve said enough that the properly motivated person could figure out what she has and what she’s taking, but I’m vague about those details deliberately. Share this post Link to post Share on other sites
