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lucym
MemberDear Kristy,
I have not been on in a while, I was so sorry to see your post. Same thing happened with my Mom she was admitted for treatment and with in days the Lord took her. It has been 2 months and I still struggle everyday with the “what happened” I try to tell myself she is in a better place with no MDS or AML somedays it works and others it does not. I wish you and your family peace and my deepest sympathy for your loss.
Love
LucyMemberEllie,
I am so sorry for your loss. Keep strong, I know it is hard.
LucyMemberMike,
Listen to Patti, take care of your body, my Mom did not do that and an infection took her body. I really beleive the dacogen could have worked for her, I only wish we started it before she was tx dependent. They say it takes 3-4 cycles to work. After my Mom’s 2nd she went 10 days with out plt tx, she was going 3x a week. She went in for her third round but was too weak and she got an infection. Are you doing nuepgeon (sp) to help with the WBC? There is a lot of hope out there, my prayers are with you as you make these hard choices.
LucyMemberKristy,
Sorry I reread your post, it is in the blood. Have the doctors said anything about Vidazza? My Mom’s doctor was torn between which to give her. Be sure to ask all your questions. Keeping good thoughts for you.
LucyMemberKristy,
Sorry the news is not good, I am sure you will find the answer to your next step.
My Mom was on the decitabine not thru trial. Was your Mom getting it every 28 days? Is the 64 % in her bone marrow or blood? I would see if you could get another round thru insurance and give yourself a little time to research and not make a quick decision. I still regret that my Mom was diagnosed with AML on a Wed she was put in hospital on Thursday and chemo started I never got to do my own research about which treatment. From what I have since read mostly everyone gets ARA-C with another drug, I would like to know all the options for the other drug they add.
Praying for you all
LucyMemberThank you all! I continue to pray for you all daily.
LucyMemberKristy
Thanks I am glad so many people are doing well on this drug. My Mom WBC was 8 on friday before her 1 dose of Decitabine. Yesterday it had dropped to 5.8 and today it was 9.5 so I am very confused on if this is good or bad.I am wondering what pre meds your Mom (and anyone else taking decitabine)gets before she has the treatment? If you could let me know I would like to compare with what they do for my Mom. I just don’t understand why she has such a bad reaction.
Hoping tomorrow (I guess that should be today since it is 1233am) is a better day for all of us.
LucyMemberHello All,
As of Thursday August 31st my Mom went 10 days w/out plt tx with a slow increase to 37. The doctor was quite shocked so we decided to go into the hospital on Sept 1 for the 3rd round of dacogen because we wanted to watch her plt counts because of the bleed issues she has had in the last cycles. Friday we get to the hospital and her plt count is 2. She has been fighting some congestion and laringitis (sp). She got 1 dose on Friday and started with the bleeding, we then found out they neglected to order the drug for the weekend and nothing will be delivered until Tues. (Don’t get me started) Anyway she had my brother plt yesterday (2 units) and today they are 79. She has needed 4 units of blood since Friday and is now on Oxygen and has a touch of pnemonia tomorrow we will see if the drug arrives and what we are going to do next. I am hoping it starts doing something.
Thanks
LucyMemberJanice and Kristy
Awesome news for your folks, may it continue to only get better
LucyMemberRuss at what level did your doc rec. for you?
August 30, 2006 at 3:38 pm in reply to: Looking for some tough answers to some tough questions #14689MemberThank you all for the information and encouragement. Jeff thanks for explaining the numbers to me. In the last 24 hours Mom has had trouble urinating, we are in the process of having her hospitalized, I fear there is a blockage in her kidneys. I on the other hand have bronchitus and can not go near her although I am thinking she gave it to me. I will keep you all posted, wishing you all a healthy/happy day
LucyMemberDennis wishing you all the best.
Kick A**
LucyMemberDear Susan,
I am so terribly sorry. Please give Vickie my condolences and tell her I will keep you all in my prayers.
LucyMemberSandy,
I believe Suzanne used Zarnestra for a year or so after she acheived remission. Do a search under Zarnestra and you will get lots of past posts. Good Luck
LucyMemberMike,
Who is going to do your stem cell at WMC? My Mom is treated at WMC. I would have liked her to go to NYP Cornell but she refused to travel to the city. I was very impressed with the doctors and the hospital facility we were given a tour before we made our decision. You may want to look into it. Most of the nurses at WMC on the oncology floor are awesome, but they are always short staffed. Wishing you the best.
Lucy -
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