Update on Mom

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• February 13, 2005 at 12:24 am #4092
  JIm W

  Member

  I just got off the phone with my mom (diagnosed RAEB Dec 2004)in AZ and here is the latest. Would appreciate anybody’s thoughts…

  I met with her Hem in late January where we were told what we already knew: “Very serious”, “will watch it closely”, etc. She was 2 weeks removed from her first course of Vidaza and bloods were still bad, but the worst (Platelettes) were trending positive–up to 71 (from 63). We asked the doc for the prognosis as best he could tell and he said 6 months to 2 years. He also said that they would watch bloods closely, but symptoms would be closely related to bloods, and based on his experience, the turn (which he described as “imminent”) will be sudden and dramatic. So at least we knew what we were expecting and were already somewhat in that mindset and talked about progression. She is 69 yrs old, diagnosed COPD, full time oxygen and daily breathing treatments, so not eligible for BMT.

  Talked to her today and she just finished her 2nd course of Vidaza, and it did not go well. Severe nausea for 6 straight days and horrendous itching. She also got her latest blood work back and Platellets were down to 49. She has asked the doc if she can take a month off (only had 2 treatments.

  When she initially told me about the overall diagnosis, I sensed that she was not going to fight it, and that she would look for any reason not to fight. I feel like the falling platellets, plus the itching and nausea is all she needs to have a reason to give up. Based on any of your experiences, What should I be thinking and/or doing?

  February 13, 2005 at 12:48 am #4093
  Kathy G

  Member

  Jim-
  My Dad just finished his 2nd round of Vidaza and he has been pre-treated both times with an anti nausea med and has not had a problem with it at all. His biggest problem is the shots that they do on his stomach bleed and end up quite a mess otherwise he has done pretty well with both rounds. His numbers are coming up and his blasts in blood are down from 10 to less than 2 so it seems to be doing something. Are they not giving her something for the nausea? Dad has an itching problem from his NHL so I can’t give you too much info on that as he itches a lot all the time.
  I hope she is able to continue.

  Kathy G

  February 13, 2005 at 1:29 am #4094
  Terri

  Member

  My bob also takes Anti Nausea meds before, The doctor sugested before he even started, He will be starting his 4th round for the second time. Biggest problem are the bruises where the shots are given going to try the Arnica gel someone mentioned. Bobs counts are kind of stable, Whites and Reds Normal, Hgb goes anywhere from 10.6 to 11.7 and plts hover between 60-80’s. Dr plans for him to do a year of this. Hope your Mom does better and definately have her get an anti nausea medication and take it right before the injections so it hits here before the Vidaza does.
  No experience with the itching.

  February 14, 2005 at 7:34 am #4095
  Andrea

  Member

  Jim

  My mom finished her second month on Vidaza three weeks ago. She goes in tomorrow morning for a bone marrow biopsy to check progress. She takes two Zofran pills one half hour before leaving for the doctors office. She has had no nausea during her treatments because of this. She did have some diarrhea. Immodium helps that. She does get very down toward the end of the week of treatment and really tired the second week.. She also has trouble with anorexia, terribly, the second week. She is very thin, that scares us the most. Her counts have been pretty good.

  Please, see if your mom could take the anti nausea drug Zofran. It’s a little expensive. I can understand her feeling down, I hope her spirits and condition improve!

  God Bless Andrea

  February 14, 2005 at 4:48 pm #4096
  JulieMarie

  Member

  Jim,

  My mom is also taking the anti nausea medication right before the first shots of the cycle. It’s an iv I know. Not sure of the drug though. She also has a prescription drug that she can take if needed at home. My mom is also itchy. She was told to put cortizone on shots when tehy are itchy and that seemed to help. Since we are in Ohio our skin tends to dry out in the winter so any type of lotion for dry skin should help as well. I forget what she has in the bathroom at home right now. Hope she doesn’t give up, she’s too young to give up.

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