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After Bone marrow transplant: Mucositis, post care and follow ups
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7, 2022 | Replies (5)Comment receiving replies
Good morning @mia01 Aw, my heart goes out to your daughter. No child should have to face AML and a transplant. I thought that over and over during my AML/Transplant journey. As a mom, this has to be one of the most difficult challenges you’ll ever face. I’m sorry her AML relapsed but this transplant will help insure that it doesn’t return. It’s wonderful her little brother could be her donor and those two are now forever bonded even more.
I just mentored another young woman of 19 who went through a similar experience with AML and transplant, her brother being the donor, I had a complete stranger. She and I are both on the positive side of transplant now. I’m 3 years post and my young friend is 7 months post; we’re both doing wonderfully. Everything we went through gave us a second chance at life. Your sweet little will be able to move on from this as well and have her life ahead of her. Don’t ever lose hope.
Mucositis is one of the most painful experiences. It’s very much like having a million cancer sores in the mouth and throat. I’m so sorry she’s still dealing with that even though her blood numbers are coming up! Usually, once the white blood count starts climbing the mucositis diminishes and the mouth starts to heal. When I had mucositis, week 2 after transplant, I was admitted to the hospital and put on a fentanyl pump for 7 days because I couldn’t eat or drink anything. If your daughter is having a similar experience I’d talk to her transplant team. They have medications for pain they can give her and also mouth rinses to help calm the pain and promote healing.
You asked about post transplant care at home. This is something should be addressed by the transplant team. When I had my transplant there were educational classes for pre and post transplant for food prep, living conditions, etc. There was intensive monitoring for 100 days daily at the clinic with bloodwork and NP visits. Everything was directed through my doctor and my extensive transplant team. I would expect your daughter should be having the same intensive followup.
Have you contacted her team? When was her transplant? Is she being monitored for her first 100 days at her clinic or hospital where her transplant took place?
Replies to "Good morning @mia01 Aw, my heart goes out to your daughter. No child should have to..."
Hi Lori. Thank you for sharing nice information.
It's been 18 days post transplant and we are still admitted in hospital as my daughter is not able to have oral medication till now.
Thankfully her Mucositis is getting better now.
We are yet to receive the counselling of post transplant care at home from the hospital team as we are not discharged yet.
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@mia01, I found a fairly comprehensive guide for post allogenic stem cell transplant patients from Memorial Sloan Kettering Cancer Clinic that you might find helpful.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
I’m not sure where your daughter had her bone marrow transplant but the post transplant recovery is a very crucial time in the patient’s journey. There is constant monitoring for infection and possible Graft Vs Host Disease. Medications are crucial and getting the proper balance for those meds, along with maintaining magnesium and potassium levels and making sure blood levels are normal are all part of that first 100 days of heavy monitoring.
You’d asked in your posting about followup appointments and post transplant care at home. That took me by surprise a little as this is a complex procedure and generally any clinic where BMT are done, have very strong educational programs for transplant patients and caregivers.
Were you not given any instructions for followup? I really worry about your daughter with her mucocitis. If she’s not able to eat or drink anything this will great affect her hydration level, nutritional level, getting her meds down and impact her recovery. Generally the patient and caregiver are required to be near the transplant center for 100 days. Is this required for your daughter?