Post-Transplant Journey: A Case Study of Resilience
Sarah, a 16-year-old ballet dancer, faced acute myeloid leukemia and underwent transplant treatment. Despite challenges like relapse and GVHD, she showed resilience and determination. This case study explores her journey through treatment, transplant, and post-transplant complications, demonstrating the importance of perseverance in overcoming adversity in the context of cancer treatment.
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Presentation Transcript
TYA Post Transplant- More Adagio than Allegro - A Case Study Caroline Kerr Macmillan Haematology Clinical Nurse Specialist Belfast City Hospital
Sarah 16 year old girl. Ballet dancer. Presented to local hospital in May 2013 with fatigue and one episode of collapse. Hb 72, WCC 12.7, Platelets 282, ANC 4.57. Bone marrow aspirate showed acute myeloid leukaemia with normal cytogenetics, NPM1 mutation and wild type FLT3
Grande pas daction- ENTR E Transferred to Belfast City Hospital. Enrolled in AML17 clinical trial. Disease not high-risk Randomised to monitor arm of trial. Treated with DA x 2 and high-dose Cytarabine x 2. NPM1 transcripts only became undetectable after final course of chemotherapy.
Grande pas daction- ENTR E Molecular relapse detected in May 2014. Egg harvest and cryopreservation. Commenced FLAG-Ida in July 2014. Achieved second complete morphological remission but persistent low level NPM1 mutant transcripts present in marrow and peripheral blood.
Transplant- GRAND ADAGE Proceeded to sibling donor stem cell transplantation in November 2014. Cyclophosphamide and total body irradiation conditioning therapy. Tolerated well. Day 100 BMB showed 100% donor but persistent low level of NPM1 mutant transcripts; Ciclosporin weaning commenced Urgent repeat BMB showed no evidence of NPM1 mutant transcripts.
Day 148 Ciclosporin stopped LFTs mildly deranged Ultrasound-guided liver biopsy showed severe haemosiderosis, moderate portal inflammation and mild bile duct damage consistent with iron overload and mild GVHD. Commenced on Budesonide with subsequent improvement in LFTs.
Day 196 Dry mouth and lips. Discomfort on eating, drinking and brushing teeth. White striae noted on the right side of buccal mucosa. Features consistent with chronic GVHD. Commenced on short course of oral Fluconazole along with Betamethasone and Nystatin mouthwashes; low-dose Prednisolone and Tacrolimus mouthwash subsequently added. Commenced re-immunisations.
Day 210 Fine erythematous rash on the upper chest and back. Commenced on Betnovate cream with good effect.
Day 253 Redness, grittiness and discharge affecting the right eye. Seen at Eye Casualty. Keratoconjunctivitis sicca secondary to ocular chronic GVHD. Started on Ofloxacin, steroid and Caramellose eye drops with good effect. Skin improving. Oral symptoms persist despite ongoing treatment with mouthwashes and low-dose Prednisolone.
Day 290 Ongoing problems with chronic GVHD of oral cavity resulting in poor oral intake and weight loss. Not settling on topical treatments and low-dose Prednisolone. Declined increasing dose of Prednisolone upcoming beauty pageant! Ciclosporin re-introduced and commenced on photopheresis.
Day 328 Prednisolone increased after beauty pageant! Photopheresis ongoing. Discomfort in oral cavity and oral intake improved as a result. Diagnosed with very dry eyes secondary to chronic graft versus host disease. Tear ducts plugged in an attempt to treat the dry eyes.
One year post-transplant Chronic GVHD well controlled then New onset muscular aches and pains in her legs. Worse on stretching. Unable to dance. Has to wear high heels at all times! Seen at Rheumatology OPD and diagnosed with chronic GVHD of musculoskeletal system. Keen for some physiotherapy.
18 months post-transplant GVHD of her muscles in arms and legs. Diagnosed with chronic GVHD of the genital tract. All other GVHD sites are well controlled. High-dose Prednisolone and photopheresis.
2 years post transplant No significant problems with her eyes, oral cavity, genital area or skin. Liver enzymes stable. Pain in her calves has improved significantly since starting steroids and she is now back at ballet. Awaiting MRI of her calves.
2 years post-transplant Fasciitis, myositis (lower back, buttocks and thighs) and bone infarct on MRI of calves. Lower limbs showing marked muscle wasting and tightness of the skin over the calves. Feet are discoloured and cold. Has osteoporosis steroids reduced and stopped. Developing elbow contractures. Commenced on Rituximab. Imatinib added in. Continues on fortnightly photopheresis. Ongoing physiotherapy. Not able to dance or wear heels.
October 2017- 35 months post transplant- Coda Positives: Remains in complete remission. Ocular chronic GVHD has resolved. Chronic GVHD of oral cavity has resolved. Chronic GVHD of liver has resolved. Chronic GVHD of skin continues to improve. Chronic GVHD of musculoskeletal system has improved significantly dancing again! Minimal analgesia requirement. No issues with serious or recurrent infections.
October 2017- 35 months post transplant- Coda Clinical concerns: Mild chronic GVHD of genital tract. Wasting of calf muscles. Early contractures of elbows (responding to physiotherapy). Osteoporosis of L1 and L2 vertebrae. Increased risk of breast cancer.
October 2017- 35 months post transplant- Coda Daily Imatinib with photopheresis every four weeks. Ongoing antimicrobial prophylaxis. Post-transplant re-immunisations. Hormone replacement therapy. Bone protection.
Discussion Points GVHD is not only life limiting but has a huge psychological and physical impact on patient quality of life. Long term implications on chronic GVHD on the immune system. Let your smile change the Let your smile change the world, world, But don t let the world change But don t let the world change your smile. your smile.
