Voice of Cancer Patients: Patient Experience Regarding Use of Tyrosine Kinase Inhibitors in Chronic Myeloid Leukemia
Authors: Aggarwal Sangeeta , Manish Singh , Chaudhary Guroosh , Aggarwal Alok , Punetha Himanshu , Jha Juhi , Gond Rahul Kumar 
Published: November 2019

Background:
Use of Tyrosine Kinase inhibitors (TKIs) have significantly improved the prognosis of Chronic Myelogenous Leukemia (CML). Since the first clinical use of Imatinib 20 years ago, second generation TKIs have been approved for first line treatment, which include Dasatinib (approved in Nov. 2010), Nilotinib (June 2010) and Bosutinib (Dec. 2017). Ponatinib, a third generation TKI (approved for third line treatment in Dec. 2012), is the only effective TKI in patients with t315i mutation in bcr/abl gene. In this study, we analyzed patient experiences and use of various TKIs in CML patients.
Method:
Many patients share their experiences in online forums that contain clinically relevant information. However, data is unstructured and hence difficult to analyze. We collected 18.2 million messages from 97 different unrestricted cancer forums, including those 44 that were CML related. We created custom ontology for CML and TKIs regarding their efficacy and side effects. We then used our AI-based platform, VoCP, to analyze these messages by using artificial intelligence techniques, e.g., natural language processing, topic modeling and machine learning.
Results:
VoCP found 87,555 messages regarding CML from 10,605 unique users. Of these, 4,857 users shared 11,017 messages containing experiences with TKIs.
2,164 users mentioned the use of Imatinib, 819 used Dasatinib, 747 used Nilotinib, 97 used Bosutinib and 71 used Ponatinib.
47 patients mentioned undergoing bone marrow transplant.
1,139 patients mentioned being diagnosed before 2010 and at least 938 of them started with Imatinib.
1,082 patients reported diagnosis between 2010-2017; 357 started with Imatinib, 235 with Dasatinib and 236 with Nilotinib.
163 patients reported diagnosis after 2017; 47 started with Imatinib, 51 with Dasatinib, 27 with Nilotinib and 5 with Bosutinib.
Imatinib:
Switches: 501 patients switched to Dasatinib, 248 to Nilotinib, 14 to Bosutinib and 7 to Ponatinib.
Side effects: 2,164 users mentioned 939 messages with side effects, which included pain 220 (23.4%), myelosuppression 154 (16.4%), fatigue 111 (11.7%), Skin rash (11.6%), GI upset 70 (2.4%), edema 84 (8.9%) heart problems 17, DVT/PE 5 and renal dysfunction 5.
Dasatinib:
Switches: 60 patients switched from Dasatinib to Imatinib, 79 to Nilotinib, 28 to Bosutinib and 9 to Ponatinib.
Side effects: 819 patients shared 587 messages with side effects, which included Myelosuppression 113 (9.2%), rash 87 (14%), headache 78 (12.2%), pain 61 (1.7%), edema 30, Pleural effusion 24 and abdominal pain 11.
Nilotinib:
Switches: 95 patients switched to Dasatinib, 57 to Imantinib, 13 switched to Bosutinib and 5 to Ponatinib.
Side effects: 747 users shared 390 messages with side effects, which included rash 135 (34.6%), pain 62 (15.9%), Myelosuppression 43 (11%), edema 16 (4.1%), cardiac issues 8 (2%), GI issues 13 (3.3%) and abdominal pain 2.
Bosutinib:
Switches: 1 patient switched from Bosutinib to Imatinib, 4 to Dasatinib, 2 to Nilotinib and 1 to Ponatinib.
Side effects: 97 patients shared 39 messages with side effects, which included nausea 9 (23%), Myelosuppression 6(15%), edema 5 (12.8%) and diarrhea 4 (1.1%).
Ponatinib:
Switches: 3 patients mentioned switching from Ponatinib to Dasatinib, 3 patients to Bosutinib, 2 to Nilotinib, and 1 to Imatinib.
Side effects: 71 users shared 25 messages with side effects, which included rash 13 (51%), pancreatitis 1 and fatigue 1.
Conclusions:
Despite the approval of second generation TKIs, Imatinib is most commonly used for treating CML in first line.
MMR and CMR are similar for all TKIs.
VoCP reliably provides meaningful insights from the patient's point of view and gives insight into unmet needs where more resources and research should be focused.
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Disclosures
Aggarwal: Scry Analytics,Inc: Equity Ownership. Aggarwal:Scry Analytics, Inc.: Equity Ownership.