It looks like you're new here. If you want to get involved, click one of these buttons!

Default Avatar

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Please read the house rules and keep this community safe for yourself and others.



Last Active


  • Hi Neela, I am so sorry that your brother is going through this. My fiance also suffered from grade 4 GVHD. The doctors always told us that the gut is one of the slowest parts of the body to heal and that it just takes time. The steroids did not help my fiance but he started receiving photopheresis (ECP) treatments that…
  • Hi Rob, I realize this post was quite a while ago and not sure if you still check this website, but I was wondering if you could tell me a bit more about your experience with PTLD and R CHOP. My boyfriend has just been diagnosed with PTLD ~5 months post transplant and he just had his first dose of R CHOP this past week. I…
  • Thank you Greg, your words mean so much to us. Unfortunately we had a pretty big setback today. More test results came back on the nodules that are in his lungs. The doctors identified it as Post-transplant lymphoproliferative disorder (PTLD). He will start a course of Rituxim today along with five chemotherapies and will…
  • Just an update. It feels like a while since I have been on here. The GVHD has been resolved, they did a biopsy which came back negative for GVHD of the gut which is great news. They are just lowering him on the steroids now. Down to 20mg! Things were moving along pretty well until they did a pre-cautionary CT scan of his…
  • Thank you all for your responses. My boyfriend has now been back in the hospital for 8 and a half weeks, still on steroids though is now down to 1 mg per kg versus the 2 mg per kg they started him at. He is having ECP treatments three times a week. During this time his EBV levels increased so they gave him Rituxinmab, he…
  • Hello All, Thank you so much for your responses, we are at day +20 and he is being discharged today. Fortunately he has had a fairly uneventful time in the hospital, with the exception of a fever and high heart rate one night and a rash the next day (too early for that to have been GVHD we were told) and bad mucositis…
  • Thanks Steve, I appreciate it. So he officially had his transplant today and although that is very exciting, the doctor did let us know that there were less stem cells from the donor than they were targeting. Because of this they are changing his medication regime. Any change to the plan tends to worry me, but I do…