HELP! My Mom has MDS

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• January 31, 2005 at 4:06 pm #3776
  Josie

  Member

  We just found out my Mom has MDS and they are giving her procrit once a week for 4 weeks. The Doctor said that should cure the problem and he red blood cells count should be normal and producing fine. I have been on the internet for a week solid to find out everything I can. He gave her a small book and sent her home. She thinks she is just anemic. I have not been to the doctor yet to talk to him. Today we go and I will see what sub catagory she has. This will be her second shot. My Mom is 82 years old and has been healthy all her life. This is he first sickness.

  January 31, 2005 at 4:26 pm #3777
  Terri

  Member

  If you post Neil will give you a list of questions, He is our forum expert. There is so much to take in when first diagnosed. Did they do a Bone Marrow Aspiration or Biopsy. How are her other counts besides the RBC. what are the Hemoglobin, White Blood Cells and platelets??

  You will find a wealth of information here.
  I wish your Mom well.

  January 31, 2005 at 5:47 pm #3778
  sarah

  Member

  Josie, welcome to forum. Its important she sees a hematologist who specializes in MDS. You will know more when you find out her classification.
  Wishing your mom well.
  Sarah

  January 31, 2005 at 8:19 pm #3779
  Neil

  Member

  Hi Josie,
  Will send a list of questions via E-mail.
  It is imperative she sees a hematologist experienced in treating MDS!!
  Most GPs and internists never see a case of MDS and are not prepared to deal with it.
  How is your mothers health outside of MDS? MDS can create complications in other organs. She should be encouraged to lead a very healthy life style to keep her basic health as good as possible.
  Has she ever had chemo for the treatment of cancer?
  Procrit is a great drug if she responds. Did her doc check her erythropoietin and iron levels before prescribing it? It needs a good iron level to be successful.
  Right now ther are lots of questions and lots of assumptions till more info is provided.

  January 31, 2005 at 8:21 pm #3780
  eve

  Member

  hi josie

  sorry to hear about your mom’s diagnosis

  my dad is 82 – took procrit shots at the very beginning of his anemia (before he was actually told he has mds) – it did very little for him

  he started vidaza over a year ago – it has stabilized his condition so that he doesn’t need txs as often

  good luck to your mom

  eve

  January 31, 2005 at 8:23 pm #3781
  eve

  Member

  also – from my knowledge procrit can not cure mds it just helps manage it (when it works)

  eve

  February 3, 2005 at 1:27 pm #3782
  Josie

  Member

  Thanks to everyone. I went with my mom to get her shot Monday and I knew more than the nurse. I told her I want to see the doctor, she said it was best if I came with my mom to her next appt is the 25 of Feb. She has two more shots a blood test then we go to see him. Thank to Neil received the questions you sent me. Thanks so much. The doctor told my Mom the day he told her she had mds that this is not the 1st case he has had and she would be suprised of the amount. I got a copy of her blood marrow test. As far a I can figure she is mild to moderat less than 2% blast. I have nerver read one of these report.
  I also got two blood test reports one from 12-2-04 and 1-5-05.
  My mom is healthly she has never been sick. the only segury she has had is for her hand. The only 2 times she has spent a night in the hospital was when she had me and my brother. She eats healthy. What type of diet should she be on. She ask me that today.

  Now a little about me
  This is my first forum. So guide me along if I am doing something wrong. I am so happy you all are here.
  I live next door to my parents and my Dad
  has altimezers. I have been takeing care of him so mom can rest since we found out about the mds. I help her with dad in the day, work swing and when I am not at work or next door I learn all i can about MDS till I can’t stay awake any longer.

  February 3, 2005 at 1:32 pm #3783
  Josie

  Member

  To fill in the part I left out. the amount of people he has cared for that has MDS. I forgot to say her red blood count went up .03 from one blood test to the other. Her white count is 7.1 from 6.6..

  February 3, 2005 at 1:35 pm #3784
  Josie

  Member

  One more thing am I suspesto have my moms age and all the stuff you guys have at the bottom of your messages. If so how do I do that?

  February 3, 2005 at 1:36 pm #3785
  Suzanne

  Member

  Josie, what a wonderful daughter you are! Your parents are so lucky to have your support and help. Suzanne

  February 3, 2005 at 1:48 pm #3786
  Josie

  Member

  Hi Suzanne, My mom is my bestfriend. I will do every thing I can to make her live as long as I can.
  Will every one who posted here know i posted again or is there some way to contact them personally?

  February 3, 2005 at 2:08 pm #3787
  Josie

  Member

  Can someone tell me what is in store for my mom if the procrite does not work.

  my moms wbc 7.1 hemoglobin 8.9 rbc 2.93. if that helps.

  February 3, 2005 at 2:24 pm #3788
  Suzanne

  Member

  Josie, yes everyone will know you posted again. when you log back on the yellow tags to the left show you new posts since you were last on.you can contact people individually and privately by clicking on the envelop at the top of their post.
  No one -even the dr’s- can tell you what will happen for you mom. Especially until they watch the progression of her disease for a while. Even then it can make sudden moves. Everyone reacts very individually to the disease and medications-one of the problems with this disease.

  February 3, 2005 at 2:58 pm #3789
  sarah

  Member

  Josie, everyone reacts so differently with MDS. No two are alike. Its good you are going to the next appointment with her. Its good to keep a daily journal and write everything down. Ask for copies of CBC’s. Its good to chart them to see trends. I am glad you found this forum. We are here for each other. Keep us posted.
  Sarah

  February 3, 2005 at 4:20 pm #3790
  Neil

  Member

  Hi Josie,
  It can take a couple weeks to find out if the Procrit is helping. Her Red counts will increase if it is working.
  If it does not help the doc will probably want to transfuse her. Transfusions are used to support many MDS patients.
  Ask the doc if her iron level is ok. If it is low the Procrit may not do its job. Procrit needs iron to work properly.
  Neil

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