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PAG2005
MemberHi Katie,
I believe some patients have gone through SCT with greater than 5% blasts. You should post your question on the Leukemia and Lymphoma Society discussion board – http://www.leukemia.org/hm_lls
I’m sure you will receive a response. There are many posts from patients that have gone through SCT’s and some of them have transformed from MDS to AML. You should encourage your dad to let the doctor search for a donor because it takes time to find a match. Your dad doesn’t have to go through the SCT if they find a match but at least he will have the option. When he feels better, he might want the option. You and your dad are in my prayers. Pat
MemberPatti,
You and your family are in my prayers.
Pat
MemberPatti,
My prayers have been with you and your MIL. I hope your MIL is aware your SIL is handling this well and developing a good relationship with you. I’m sure that is a part of the reason she is holding on. My great aunt had a daughter that was dependent and my aunt was so strong like your MIL. I have followed your posts for a long time and my heart aches for you and your family. God be with your family and your MIL.
MemberFrank,
I was wondering if your counts have improved since you participated in this trial. Did you receive only 1 injection of PR1 and WT1? Do you know what dose of PR1 peptide you received?
My mother was diagnosed with AML in early 2004 and relapsed within weeks and her counts remained quite low after her second induction treatment. She participated in the Phase 2 PR1 Peptide trial for AML last year and her counts have been improving. Early 2005 her WBC was around 1.9 and platelets were 18 and the last few months her wbc has been around 3.3 and platelets have been in 50’s and 60’s. She participated with the hope of preventing a relapse. The trial also included patients with CML and MDS. (The Phase 1 trial closed last year.)
I just found a Phase 2 study of PR1 Peptide Vaccine in MDS.
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/index/2005-0913
Pat
MemberHi Sandy,
There is insurance topic on the Leukemia & Lymphoma discussion board that might help you. Here is the website… Pat
http://www.leukemia-lymphoma.org/ubb.adp?frame_url=http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro&item_id=9388MemberHi Fran,
My mom had blood infection from her port while waiting for her counts to recover after her induction treatment. Once they identified the infection, she was treated with an antibiotic and within 1 week her counts started to come back up and she was okay. It’s not unusual for this to happen. Maybe someone on the board can give you an idea how long it takes for counts to recover after Vidaza treatment. They will try to keep the infection under control with antibiotic until his counts recover. Pat
MemberHi Lucy,
My mom had Mylotarg combined with another chemo for her 2nd induction treatment. Mylotarg has a long list of possible side effects so I was very nervous about her receiving it. At the time there was another Leukemia message board active and a few people had taken Mylotarg and didn’t have bad side effects so that helped. I stayed with her the day she received mylotarg and I left the hospital around 10:30 PM.. I thought you could have some reactions up to about 8 hours after receiving mylotarg.. I was concerned about her getting severe shakes and not calling the nurse… You can get severe shakes/cold similar to reaction from receiving platelets. My mom did get that reaction and I ran out and got the nurse and shakes stopped once she received demerol and benadryl… At the slightest tremble I ran out because the severe shakes/cold comes on very quickly. I finally left and she told me she had one more reaction a few hours later in the middle of the night. I wanted to stay overnight with her just in case and I was really mad at myself that I left her. ( I think you can have a reaction up to 24 hours, less likely the more time that goes by) She kept insisting that I leave.. It was worth it, because it did put my mom into remission. It did take longer for my mom’s counts to come up but it was her 2nd induction within a short period of time. It sounds like your mom handled the chemo well . My heart goes out to you with her struggle to keep her platelets up.. I will be praying for you and your mom.. Pat
MemberPatti,
My heart aches everytime I hear news like this. I’ve been praying for Dee and her family and will continue. She is a very sweet lady and I’m sorry she has to go through this. Thank you for the updates. Pat
MemberEsme,
I’m so sorry. You both fought so hard. You and Martha are in my prayers. Pat
MemberHi Ellie,
Barbra Greene posted about the MD Anderson vaccine last year but her husband wasn’t eligible. We started looking into the trial around the same time. I’ve heard that the trial will be available in more hospitals soon. Pat
MemberEsme,
Both of you are in my prayers. Hoping this treatment kicks in and helps Hans.. Pat
MemberKaren,
I’m sorry to hear that your Dad passed away. My thought and prayers are with you and your family. Pat
MemberKathy,
I’m sorry to hear that your Dad passed away. My thought and prayers are with you and your family. Pat
MemberHi Angie,
My mom was diagnosed with AML with WBC of over 200,000. They immediately gave her hydrea to try to reduce the wbc or at least keep it from going higher until she was tested to see if she was eligible for chemo. Her WBC did go down but I don’t know by how much before she started chemo. I believe it can stabilize the wbc or bring it down but I’m not sure for how long. I think with the increase in dosage you should be able to see difference within a week. Pat
MemberCaroline,
Special prayers being said for you and your dad. Pat
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