52 years old MDS q5 deletion Anemia and RA

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• May 24, 2022 at 7:33 pm #58173
  Sharon Bonifas

  Participant

  Hi I was diagnosed with MDS Q5 deletion and have had anemia most of my life. I have also had RA for 26 years. The Docs think that I have had this for the past 3 plus years. RBC 2.83 Hemoglobin 9.3 Hematocrit 27.6

  I and just trying to figure out how long I have. I am starting Erythropoietin Any reply would be great I feel like I am blind folded in the dark in a foreign place.
  Thank you,
  Sharon

  May 24, 2022 at 8:14 pm #58174
  Tom Nelson

  Participant

  78 years old. Going on 5+ years after being Del5q diagnosed when the HGB was at 10.5. Have been on Aranasp for 4 years. Presently receiving some PRBC units due to HGB drop below 7.0 Was back up to high 8.s after 5 months of Revlimid. Had to stop Revlimid due to rash and other issues. Revlimid is the best medication for Del5q but has problematic side effects for many people. Have had to cut back on many homeowner’s chores due to fatigue. Am my wife’s primary caregiver. Will probably need more assistance and senior living as time goes by.

  May 24, 2022 at 8:35 pm #58175
  Kevin Dugan

  Participant

  There is no end date. Lots of good meds your dr can try. Revlimid really good for me. Get a good doc.

  May 25, 2022 at 10:42 am #58182
  Kathleen Till

  Participant

  There is a really good MDS site on Facebook if you are on there. People share so much stuff on MDS.

  Fight Myolodysplasticsyndrom

  Think I have not spent it right but spell correctly and out in on Facebook.

  Kathy

  May 25, 2022 at 3:31 pm #58184
  Marjory Begley

  Participant

  Hi Sharon,
  Welcome to the Forum – I have found it to be a great help. I was diagnosed with MDS Del 5q about 7 years ago. I, too, was in the dark and ended up going to Moffitt Cancer Ctr in Tampa for help. Moffitt is the premier Cancer Ctr of Excellence for MDS so their team is knowledgeable re:MDS and the different options for treatment. My local oncologist who diagnosed me works in tangent with my Moffitt doc so I don’t have to travel to Tampa (about 2 hours) which is tremendously helpful.
  I, also, have an inherited anemia called Thalassemia Minor which affects my RBC. So it is sort of a double whammy trying to boost my hemoglobin toward normal levels. I have been on Procrit injections given by my local onc. office every two weeks. I am fortunate because the Procrit which is an erythropoietin has been working for these 7 years which I am told is unusual. When the Procrit injections no longer work, I will have to start taking Revlimid (which is recommended for 5Q patients.
  I don’t know where you live but if you are near a Center of Excellence for Cancer you should try to make an appt. Oncologists deal with all cancers and having a physician who knows about MDS or has many MDS patients is optimal.
  There are treatments available and it is helpful to learn about MDS 5Q so you can be a good advocate for yourself. Ask questions, do research and don’t give up.

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