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PAG2005Member
Caroline,
My mom has secondary MDS and her creatinine level has slowly increased over the normal range during the last few months. She has fluctuated between 1.4 and 1.6. Her Cardiologist changed her blood pressure medication to see if the creatinine level would go down but unfortunately it didn’t. He suggested we see a Kidney specialist. I’m a little concerned, I hope it is not a serious problem. What is your dad’s creatinine level? How do you know his Coagulation Factors are not working? Is it listed on a blood test? We have an appt. on Friday with the kidney specialist. Pat
PAG2005MemberSarah,
My mom has AML and she is in remission. I read the Leukemia and Lymphoma discussion board to keep up with the latest treatments. There is a man on the board that has received a haploidentical stem cell transplant for ALL and he has been in remission for over one year. His wife posts on the board under the userid JGF, and I’m sure she would answer your questions regarding this type of transplant. I believe there are some posts about cord blood transplants too. The website address is http://www.leukemia.org/hm_lls
My prayers are with you and Charlie. Pat
PAG2005MemberSigit,
There is a Leukemia and Lymphoma website that has a lot of information available for AML. They also have a discussion board that has specific section for children with blood diseases. Please post your question there and I am sure you will receive some responses. It might be slow this weekend because this is a Holiday weekend for us but I’m sure you will receive some responses. The website is http://www.leukemia.org/hm_lls
My mom has AML so I know how difficult this must be for you. My prayers are with you. PatPAG2005MemberCarrie,
I’m very sorry for your loss. My prayers are with you and your family. I’m so glad your dad was surrounded by loved ones when he passed. Hugs.. Pat
PAG2005MemberCarrie,
My prayers are with you and your family. I’m glad your dad is comfortable without pain. Hugs.. Pat
PAG2005MemberKristy,
How’s your mom? Here is the web address for an article on the vaccine
http://www.cancerwise.org/february_2005/…full&color=red.
Here is the web address of the clinical trial.
It is in Phase II and more than 50 patients have participated in the clinical trial. Pat
PAG2005MemberPraying for Lola.. Pat
PAG2005MemberHi Kristy,
My mom is in remission and she’s feeling good. It’s good that your mom is getting blood work each week. If she is only getting 1 blood transfusion every three months, that seems pretty good. My mom had induction treatment and 1 consolidation treatment. She was getting ready for her 2nd consolidation when her counts started to drop and a bmb revealed she had relapsed. We were devastated. She immediately went thru induction treatment again and went into remission again. Usually after remission your counts go back up to close to normal levels. After the second induction her counts started to rise but then halted and started to go low again. (My mother’s experience has been very strange.) She developed some kind of low level MDS.. The Dr. didn’t think she had enough chemo to cause secondary mds but all her counts were very low. She needed occasional blood transfusion and platelet transfusion every two weeks. The Dr. said she could have some hidden leukemia cells that couldn’t be detected by the bmb or low level mds. I was very stressed out for a few months waiting to see what was next. It took a few months but her counts slowly recovered into levels that were okay. She finished her 2nd induction treatment June of 2004. My mom just finished the AML vaccine clinical trial at MD Anderson last month. They are hoping this will keep her in remission longer. Her platelet count did go higher after receiving the 3 vaccines. ( This vaccine is for MDS patients too ) I was going to mention this on the board but I was waiting for her next blood count to see if her platelet count remained the same. I hope you can follow all this. My mom was 72 when she went thru her first induction treatment. Maybe your Dr. thinks it’s best to try and knock down MDS/AML with one of the MDS drugs instead of going right to induction. Even with AML, everyone seems to be treated with different combinations of chemo. It can be very confusing. Let me know if you have any questions. Pat
PAG2005MemberKristy,
My mom was diagnosed with AML. The only symptom she had was some redness on her foot and it started to move up her leg. She was feeling tired but we thought it was because she was upset about my dad being in the hospital. She finally went to the Dr. and her wbc was over 200,000 and the redness was celulitis. They believe she only had AML for a few weeks and her WBC was at 200,000. She was given hydrea to knock down wbc while they ran tests to make sure she could receive the induction treatment. Hydrea is a mild chemo and it brought down her wbc without bad side effects, while she waited for the next step. How often does your mom see your local oncologist? Since your mom is being monitored they will know when she starts to transform to AML. Did you say her Dr. wants more time between transfusions before treatment? Does she usually need blood transfusions? When AML comes out of the blue, the patient could come down with an an infection of some sort that doesn’t clear up because of the high WBC. They might experience fatigue or shortness of breath due to low hct or easy bruising due to low platelets. Has the Dr. given you much information about the decitibine trial? I’m sorry you and your mom have to go thru this. I pray for a cure for MDS and AML.. Pat
PAG2005MemberKathryn,
I’m so sorry to hear of your loss. You and your family are in my prayers for peace and strength during this difficult time. Your dad was blessed with a very compassionate and kind daughter. Pat
PAG2005MemberKathryn,
I’m sorry to hear this news about your dad. I will be praying for you and your dad. PatPAG2005MemberYou and Hans are in my prayers. It’s good that he is feeling good and strong. Do you know what chemo he will be receiving with Gleevac? Pat
PAG2005MemberDon,
I will be praying for you and Karen. Pat
PAG2005MemberCarrie,
I’m glad your dad doesn’t have pneumonia. I hope they find the source of his infection soon. I know how hard it is to see your dad weak. He will be in my prayers. Pat
PAG2005MemberAndrzej,
I wish your dad the best and he will be in my prayers. Pat
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