After Bone marrow transplant: Mucositis, post care and follow ups

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?

@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?

I also had mucositis after my SCT for about 4 months. My doctor prescribed a mouthwash called Mary’s Magic. It was truly amazing and helped immensely! That being said, it still took a while for mucositis to go away.

In terms of follow up, after I was released from the hospital, I spent a week in the city where I had my transplant and had to go in for blood draws and to see my transplant doctor. Since I was reasonably stable, I was allowed to go home (3,5 hours away from the transplant center). I had weekly appointments after then for a while and then had to come back twice a month etc.

Contact your transplant team and ask your questions - don’t be afraid to have them clarify whatever is still confusing. It’s a long recovery process and you need a good way of reaching your transplant team. My transplant center had a head nurse whom I emailed with any problems, med refills etc. The center also had a doctor on call during the evening and night hours to call if my temperature spiked or I had another emergency.

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.

Hi! I’m glad to hear your daughter is still in the hospital getting care. That mucositis is awful and needs attention, as well as just the recovery from her transplant.

I’m expecting she’ll be in their care for several more weeks and then the followup will begin. It all depends on the clinic, of course. But from my experience I had to stay near the Mayo Clinic in Rochester for 100 days. There were daily blood checks while I was in the area. After that it went to every two weeks at Mayo and local blood work done every other week. So there was close monitoring to make sure there were no surprises.

My advice for you, is to make a list of questions you might have. I gave you the pretty compressive list of post allo transplant guidelines from Memorial Sloan Kettering. I had my transplant at Mayo and have a similar guideline but it wasn’t online. I have a booklet which explains the precautions to take to avoid infections and such.

As you can see, there are a number of us ready to jump in with encouragement and information. @alive, @edb1123 and I are several years post Allogenic transplant and will be happy to answer any questions you have. Is there anything in particular you would like to know?