72 year old mom diagnosed w/ MDS need help

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• July 4, 2015 at 3:29 pm #27031
  Shannon

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  I’ve been surfing the web trying to understand what my mom’s going through and came across this forum. she is currently at THE JAMES hospital at Ohio State University, they are trying to stabilize her with blood transfusions and platelets but her body just keeps eating them up, it’s a terrible cycle she’s going through. Her platelets get as low as 5 and have been as high as 40, but she quickly goes through these and tanks out at 5, then the cycle starts all over again. They started a crossmatch for the platelets for this reason and she’s not going through the platelets so quickly but I’m wondering what the next step is and how long will it be before her body stops responding to the crossmatched platelets? Her hematologist put her on Revlimid (sp) when she was very sick, she lasted for 10 days before she had to be admitted to the ER, her platelets were so low she had started to bleed internally. TO further complicate things, she has CVID (Common variable immune deficiency) but has been successfully treated with IVIG therapy for 13 years, it wasn’t until the last month that we found out she had MDS. Mom also is a colon cancer survivor and went through chemotherapy 20 years ago. I’m wondering if her IVIG transfusion will even have an impact on her in this weekend state. I have so many questions but the doctors are taking a wait and see approach and don’t want to start therapy in her weakened condition, but how can she get better when she’s stuck in this kind of cycle? Any advice would be appreciated….thank you in advance.

  July 10, 2015 at 3:42 pm #27102
  Anonymous

  Inactive

  Thank you for your post with information regarding your mother’s health. I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. She should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment except supportive care like transfusions or epogen (Procrit). Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this helps. If you need any further help, please do not hesitate to contact us at 800.637.0839.

  • This reply was modified 8 years, 9 months ago by .
  July 15, 2015 at 10:13 am #27122
  Jill Whitney

  Participant

  Dear Shannon,
  I am so sorry for what you and your Mom are going through. I also had an issue with thrombocytopenia following a stem cell transplant and relapse eight months later. I received over 100 HLA-matched platelet transfusions. It does take time for the medications to work. I was started on azacitadine (Vidaza) and it took me about 12 cycles before I was transfusion independent. I was very sick in the beginning and ended up in the hospital a few times. One time, my counts were barely existent. I am a bit younger than your mother, but I have now been on Vidaza for over 4 years and I’m doing well. You are both in my prayers.
  Jill W.

  September 21, 2015 at 12:33 am #27382
  Lori chandler

  Participant

  My mom was just diagnosed with MDS. She has been in the hospital two times for blood transfusions, 3 units each time. She was on Revlimid but had reactions. She is now diagnosed with c diff and is having liquid retention in her bladder possibly due to her diabetes and dehydration. I don’t know all her numbers but hopefully my sister will get access to the records so that we can see the information needed to get the best support and help. I am feeling a little helpless being so far away and being able to do more.

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