Attn: MDS Patients and Caregivers 65+ years old

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• May 21, 2021 at 11:14 am #54528
  Anonymous

  Inactive

  The Cancer Support Community’s Research and Training Institute (RTI) is excited to be working on a new and improved version of the Cancer Experience Registry (CER)! The CER is a confidential online survey for anyone who has ever been diagnosed with cancer, and for caregivers of individuals with cancer, to share their experience. The RTI is collecting feedback on the new survey and would love your input. Please email them at rsenkpeil@cancersupportcommunity.org and let them know if you are interested in providing your feedback before it goes live. They will select a small group of interested members to participate.

  Those selected to participate will be asked to answer questions over the phone or video call, which will take 60-75 minutes. After participating, you will receive a $40 gift card via email. Gift cards are usually received within 1 business day of participation.

  If you are selected, you will hear from the RTI by June 11, 2021. Please note that if you are selected and participate, the information you share during the interview is confidential. It will only be used to improve the Registry and will not be used for any other purpose or shared with anyone else.

  The goal for the redesigned CER is to capture the unique experiences of every cancer patient and survivor—we need your help to achieve this goal.

  June 2, 2021 at 9:48 pm #54574
  Mary Largent

  Participant

  I’am an 83 year old native American diagnosted with low MDS June2020.I was very anemic.I had started losing weight prior to this.
  I had horrible diarrhea for four months or longer. Hemoglobin was a7 and very low as well as the RBC.I asked for bloodless treatment. I was given procrit injections that didn’t work. I am now on Vidaza that is working. I get 20 injections each month and seem to be getting stronger. I have gained 10lbs, but feel some of it’s water weight. I am not on a special diet or a lot of meds.I don’t have nausea, but have pain in hands,feet,back,kidney problems and back pain. These pains are serious a couple of days and disappear. Sleep loss and memory loss. I am thankful for the prognosis.I try not to get discouraged but rely on my faith to keep me strong and keep my mind busy. I read all I can about my MDS. It had really affected my skin and hair. My makeup table looks like a store counter and it paid off!
  I take care my room and
  Personal needs.

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