飲食習慣
● 培養均衡飲食習慣
健康的飲食可為你提供足夠的能量，應付日常生活所需。均衡飲食亦可為你提供所需的維他命及營養。如欲想服用維他命補充品，可與醫生商討。如難以定時進食，可考慮增加進食的次數及減少用餐的份量，並在正餐以外的時間適度地吃些小食。¹⁴-¹⁶
● 患者飲食指南¹⁴-¹⁷
| 蛋白質
|
肉類、家禽、蛋、豆類、魚類 |
| 碳水化合物 | 粥、粉、麵、飯 |
| 脂肪 | 選擇健康的脂肪來源，例如橄欖油、牛油果或果仁 |
| 礦物質與維他命 | 鐵、銅、維他命A, B12, C, D, E等 |
生活模式
● 建立活躍及健康的生活模式
藥物治療有助縮減患者的脾臟體積，紓緩骨髓纖維化帶來的症狀，例如腹部不適或用餐時的飽腹感。當你重拾食慾，飲食習慣恢復正常，便能回復體力。藥物治療亦有助減少夜間盜汗和骨頭疼痛等症狀，改善睡眠質素和有助消除疲累。接受藥物治療後，失而復得的活力會令你自信增強，過更健康、更快樂的生活。¹² ' ¹⁸
1. 培養體力活動的習慣 ¹⁶
每天做一些簡單的家務，例如煮食或洗衣服，亦可與朋友或寵物一同去散步
2. 把握每刻活動的機會 ¹⁶
外出購物或看醫生時，選擇步行或踏單車，善用每個能運動和舒展身心的機會
3. 參與運動興趣班 ¹⁶
例如瑜伽班或太極班，並多參與社交活動，例如打高爾夫球或保齡球
骨髓纖維化對每個人的影響不一，可與你的醫生商討，進行一些對病情有益的運動和活動。¹⁵
個人衛生
● 保持個人衞生
由於骨髓纖維化及相關治療可能會增加患者受細菌或病毒感染的風險，故做足預防措施有助減低感染的機會。如你感身體不適，應該及早求醫，以免病情惡化。¹⁹
● 保持良好生活習慣 ²¹
· 煮食前請用皂液洗手
· 食物要新鮮及清洗乾淨，根類蔬菜需要去皮
· 保持廚房、雪櫃及餐具清潔
· 在雪櫃解凍冷藏食物
· 分開生熟砧板
· 食物要煮至熟透，並立即食用
· 避免進食半生熟的食物或醃製品
· 用餐前，用滾水燙一燙餐具及碗碟來
· 使用更容易清潔的鐵餐具
· 若要儲存熟食，應立即放入密封容器，放涼後冷藏
接種疫苗 ¹⁹
接種疫苗是你和家人免受感染的最有效方法，如你不確定自己是否已接種疫苗，請向醫生查詢及決定需要接種哪種疫苗。
一經診斷為骨髓纖維化或開始特定療程前，未接種疫苗的患者可能無法在療程開始後接種。故此，與患者緊密接觸人士（包括配偶、護理人員、兒童、家庭其他成員等）都應接種疫苗，以保護患者。
心理支援
當你渴望得到朋友的支持，或與同路人分享時，你需要一個良好的支援網絡。在開始療程時，家人和朋友在行動或心理上的支援是十分重要的。當你感到失落時，有朋友聽你傾訴；當治療有進展時，有家人為你慶祝。他們時刻的陪伴和支持都對你的治療有幫助。以下一些小建議，教你如何敝開心扉向家人和朋友傾訴，尋求各方協助：18, 21
1. 不要害怕接受支援
當看到治療有進展時，你的親友跟你一樣雀躍。如果被關心到透不過氣來，可要求一些獨處的時間。
2. 清楚表達你需要幫忙
其實很多患者都想得到支持，但不懂得如何清楚表達自己的需要或是開不了口，例如感到有精力時，想有人鼓勵你；當你重拾食慾時，想有人幫忙購買食物，此時不妨清楚表達你的意願。
3. 陪同你一起去見醫生
這能讓你的家人和朋友多了解你的病情和治療狀況，亦可協助你記下醫生的建議。
向別人伸出援手
與其他有類似症狀或感受的骨髓纖維化病友見面，分享治療點滴，都對治療有幫助。如有需要，可向醫生或醫護人員查詢相關支援團體或病人組織的資訊。18, 21
參考資料：
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- Leukaemia Care. Myelofibrosis. A Guide for Patients. Version 4. Printed October 2022.
- Erythropoietin-Stimulating Agents. Cleveland Clinic. Available at: https://my.clevelandclinic.org/health/drugs/14573-erythropoietin-stimulating-agents. Accessed 20 Jun 2022.
- Healthy Lifestyle Habits For A Better Quality Of Life. Leukemia & Lymphoma Society. Available at: https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FF7_Healthy_Behaviors.pdf. Accessed 7 February 2022.
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- Staying Healthy through Diet and Physical Activity. Children’s Oncology Group. Available at: http://www.survivorshipguidelines.org/pdf/healthlinks/English/diet_and_physical_activity_Eng.pdf. Accessed 7 February 2022.
- Nutrition recommendations for MPN patients. Scherber RS et al. MPN Quality of Life Study Group. Available at https://www.mpnresearchfoundation.org/wp-content/uploads/2021/04/Nutr-Recs-for-MPNs_FINAL_12-4-19.pdf. Accessed 20 June 2022.
- Coping With Myelofibrosis. Cancer Care. Available at: https://www.cancercare.org/publications/197-coping_with_myelofibrosis. Accessed 7 February 2022.
- What Does It Mean To Be ‘Immunocompromised’?. Yale Medicine. Available at: https://www.yalemedicine.org/news/what-does-immunocompromised-mean. Accessed 7 February 2022.
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