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Birgit
MemberDiane,
So sorry for your loss, Will keep you in my prayers.
Birgit
MemberAlice,
My thought and prayers go out to you. My mother succumbed to this awful disease on July 11th of this year. As an only child I too have a huge hole that has been left in my heart. My solace is that in the 6 years she fought so hard, so many advances have been made.Regards,
BirgitMemberThank you all for your kind words.
BirgitMemberDot,
Stay positive and remember to take every day one step at a time. Revlimid will make a huge difference in Tommy’s quality of life. Make sure that you both live it to the fullest.MemberMy mom was in the second phase of the original trial for Revlimid. For her is was a miracle drug, she even testified before the FDA to get the drug passed. She had been transfusion dependent for a about a year when she started it. She was 5q- and while on the Revlimid her counts were almost normal and the chromosome abnormality disappeared. She was in remission for almost three and a half years. A year ago her counts began to drop and the 5q- returned. We are thankful for those 3 1/2 years where she was able to lead a relatively normal life as opposed to the weekly transfusions she endures now. I hope that it is successful for Tom.
BirgitMemberVirginia,
Try to stay positive and most importantly reallistic. I agree with Sandy share time and live life to fullest with dignity. It can suck when tied to an IV for blood product 2-3 days out of every 7. Unfortunately with no immune system left, a simple pricked finger can lead to a lethal infection. So try to keep the environment clean, check for any breaks in skin and treat them vigorously with cleaning, and whatever ointments or antibiotics the docs prescribe. If you make sure he wears a mask in public and carry wipes like GermX to clean hands, car doorhandles and such. And if people come to visit have them wear a mask. The weather is getting better every day, smile lots and hold hands. I’ll pray for you too.
BirgitMemberThanks Russ, CD33 is indeed the same drug as Lintuzumab, currently manufactured by Seattle Genetics. Other names it has been known to sneak around as are “Anti-huCD33 mAb” as well as “HuM195”.
BirgitMemberThanks for all of the info. My mom is heading off to Italy on a cooking tour jacked up with antibiotic to ward off the bad bugs and lots of antibacterial lotion. When she returns she will begin Dacogen cycles. Her hgb/hct is holding steady, just those wbc/absolute neut/platelets are swinging low, so she still feels good. She is determined to make this trip. Revlimid gave her almost 5 years of great quality of life, hopefully Dacogen can do the same.
BirgitMemberThanks for all the info. I just got a ton of info from the marrow doner site. We are waiting to hear the initial results of the first search of the registry, so we’ll see. Can anyone tell me what sct’s cost and if ins covers them with MDS patients, or will medicare cover any of the costs?
BirgitMemberJack,
what are the reasons for cord vs regular SCT? Do cords need to be a match in the 10 markers? My neighbor has a baby due in a week and wants to donate her baby’s cord but we haven’t been able to find out what to do. We are still awaiting results of the initial blood work for a match.
Thanks,
Birgit -
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