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lucym
MemberThanks Suzanne,
Can you or anyone tell me about your tx during chemo? My Mom has always had plt issues, yesterday she had 5 plt tx and this morning her plt count is still at 1. Her HGB dropped from 9 to 5 in 24hours (yesterday she passed out and had a slight sezure) after 4 red blood tx her hgb is at 10 this morning. I am very concerned that the tx are not sticking even for a short time. Any information you can share would be great.MemberBilly’s Dad,
Just checked out your update. (Terrific Site, great song) Awesome news! Congratulations to Billy, and tell him all the best in High School!
LucyMemberSuzanne,
Can you let me know how long after you started your 1st round of chemo did the numbers start going up? Thursday 5/18 will be 14 days after Mom started 1st of 5 days of chemo. Today (12days) numbers still really low, diarrhea and she is very weak. Doctor’s are not willing to give time frame because every patient is different. Also what is remission exactly? Blasts lower than 5%? Was there any other information from the seminar at Hopkins?
Thanks LucyMemberHi Karen,
I am not sure if this treatment is the same as my Mom received in early Jan 05. ATG a purified horse protein? If so my Mom has hypoplastic marrow similar to that of a person with Aplastic Anemia. ATG has had some success with Aplastic Anemia patients so they do try it on hypoplastic MDS patients. My Mom had no success with the treatment althought they say it could take up to 12 weeeks to start working. However I would like to make you aware that my Mom suffered from fluid overload during the treatment, so have others on this site. This was not something we were aware could happen, but they were pumping her with so many different fluids her body could not take it and her lungs filled with fluid she was placed on oxygen. Thank God she was able to get rid of the fluid (about 14 pounds worth). Not sure if it is the same treatment but my Mom has scarring in her marrow too, we are hoping to do a Stem Cell transplant in May. Wishing you the best with the treatment.
LucyMembersuzanne,
Can anyone go to the lecture on May 11?
LucyMemberDear Theresa,
I am so sorry about your Dad. It is very unfair how there always seems to be surprises of the worst kind with this stupid disease. My thoughts and prayers are with you and your family. Your Dad fought a tough fight and now he is at peace.
LucyMemberHi Patti,
Your news is very promising. My Mom has agreed to see a naturpath. I am hoping the naturpath can help get her and keep her strong for her SCT. My Mom’s Hemo/Onc is Chinese he is actually going to China on vacation for 2 weeks however when asked about consulting a naturpath he flat out said NO. I am not so sure being Chinese is all that necessary. Wishing you all well.
LucyMemberDear Sarah,
I am so sorry for your pain, it is very kind of you to share your story with me. The information is very helpful. My Mom does not have any issues with her spleen or kidney. This all started with her having low platlets. Now all cell lines are effected. We were concerned about advancing to AML now they have given us this fibrosis diag. I will be sure to ask the doctors how the fibrosis will effect the SCT. Continue taking one day at a time, I will keep you in my prayers and all the other members of this forum.MemberPatti, Jimbob,
Can you tell me how one would find a reputable chinese herbalist? Thanks LucyMemberJimbob are you saying SCT not possible now? My Mom is scheduled for middle of May.
MemberPatti
I can not thank you enough I will talk to my Mom today. All the best to you
LucyMemberPatti,
Awesome news, I am so happy for you and your MIL. Please keep us all posted always looking for something that works. All the Best LucyMemberHi Patti,
I asked the Dr. last week about the brain bleeding and he said if she was bleeding in the brain she would not be able to sit up and tylenol would not help. Mom say her whole head hurts not one specific area. We were told it was the lack of blood circulation. I was looking for something natural I will check out the web site. Thanks LucyMemberthat is great news. Did your counts drop very low before they went up? Have you been having any tx in the last 2 months?
MemberHi Patti,
When my Mom was in the hospital from an infection in Jan she started receiving Plt tx almost daily….these were her first tranfusions and she was being pre medicated. Finally after a while she stopped having reactions and has not had any since. I always wondered if it had anything to do with the infection (she was very weak from the infection)and maybe her body was just reacting differently because of it. Glad to hear her hives are going away and she is feeling better, good idea to up the benedryl.
Lucy -
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