61 Y/O MDS patient, with remission after failed BMT. Please help!

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• July 6, 2015 at 4:19 pm #27041
  ivanomr16

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  Hi,

  My family has been going through a roller coaster of emotions for the past year, and unfortunately we are in our all-time low. My mom has very intense stomach cramps that are preventing her from eating, and as a result lost a lot of weight and become very weak. We live in North California (Bay Area), and have spoken with Oncologists, infections decease doctors, and Gastroenterology from Kaiser and Stanford; all efforts to no avail in explaining the reason of my Mom’s cramps. We are coming here to see if any of you have had any experience with severe stomach cramps, and what was the solution that you took? Any input would be greatly appreciated as we are desperate to help my mom fight through this.

  Here’s a more detail summary of our situation:

  Sixty one years old female diagnosed MDS in the Spring of 2014 who went through five cycles of Vidaza prior to her bone marrow transplant. She had a bone marrow transplant in October, 2014. She started having mild cramps around December, 2014 to which the Doctors attributed them to all the medicine she was taking. On March, 2015 had a bone marrow biopsy and the results of the biopsy demonstrated that the transplant had failed. Soon after these news she started having fevers throughtout the day and also she began having stronger and more frequent cramps along with mild diarrhea. She also started losing her appetite and lost around 12 lbs in a period of three weeks. She had multiple blood tests done and a colonoscopy and none of these showed any signs of infections. The Doctors said that her colon was inflamated and they also said they saw a couple of CMV cells which let them to diagnosis “CMV- Colitis” She was hospitalized one week in March mainly because of her ongoing fevers, strong cramps, diarrhea and being weak. While in the hospital a CT scan was done; the CT scan showed no infections. While in the hospital the Doctors started treating her with Valganciclovir (Valcite) which appeared to have helped with her symptoms; she went home after a week continuing taking Valganciclovir (orally). However, after a week her fevers came back as well as her cramps and diarrhea. After two weeks of her March hospitalization she was again hospitalized for a week and the Doctors continued giving her Valganciclovir (through IV). During her second week at the hospital a PET scan was done which show no infections; the Doctors said the PET scan only showed that her colon and stomach were inflamated. After a week in the hospital she was sent home withe Valganciclovir (IV form) and she continued with Valganciclovir for three more weeks. Around the third week of her treatment with Valganciclovir, the Doctors said to stop taking Valgancilovir since all her symptoms (fever, cramps, diarrhea) continued and her blood labs did not show any signs of CMV. It’s been three weeks after she stopped Valganciclovir and her cramps are getting worse and she’s becoming weaker and weaker everyday due to her lack of appetite and pain when eating.

  Thanks for reading,
  Ivan

  July 10, 2015 at 3:46 pm #27104
  Anonymous

  Inactive

  Dear Ivan, Have you sought a second opinion with an MDS expert? I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. If you have any questions or require further assistance, please do not hesitate to contact us at 800.637.0839.

  July 10, 2015 at 5:06 pm #27106
  Jill Whitney

  Participant

  Dear Ivan,
  My first thought would be Graft vs. Host Disease of the gut, but you mentioned that her transplant was unsuccessful. I relapsed eight months following my stem cell transplant, however, I am still 100% donor. I am assuming that her doctors have evaluated her for GVHD? I agree with the site administrator. I would go to a Center of Excellence for MDS.

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