Voice of Cancer Patients (VoCP): Analysis of Patient Experiences and Use of Burton's Tyrosine Kinase (BTK) Inhibitors and Venetoclax in Hematological Malignancies
Authors: Aggarwal Sangeeta , Aggarwal Alok , Bhowmick Jyoti , Sharma Rishi , Gond Rahul , Kapoor Siddhant , Kumar Sujeet 
Published: October 2019

Abstract
Background:
BTK is a critical effector molecule for B cell development and plays a major role in lymphomagenesis. BTK inhibitors including Ibrutinib and Acalabrutinib have been approved and in use for treating Chronic Lymphocytic Leukaemia (CLL) and other B cell malignancies. Bcl-2 is a critical regulator of apoptosis and its levels are markedly increased in CLL and follicular Lymphoma. Venetoclax is an oral Bcl-2 inhibitor that showed significant response in high risk CLL with p53 mutations and deletion 17p, and it is now approved for treatment of CLL second line therapy regardless of p17 status. In this study we analysed patients' usage, experiences and concerns related to these recently available oral treatments.
Many patients share their experiences in online forums that contain millions of freely shared messages, which can be analyzed for understanding patients' concerns and experiences. However, analyzing such information is difficult because this data is unstructured. Furthermore, large volume of such data adds to complexity, making any meaningful analysis difficult. Voice of Cancer Patients (VoCP) is an automated system that uses parallel and distributed computing, Natural Language Processing, Machine Learning, and rule-based algorithms to process unstructured text and to extract various attributes of patients, drugs, regimens, usage, concerns, side effects and supportive therapy.
Method:
We collected 15.7 million messages from over 50 cancer forums that provide clinically relevant information; we built custom ontologies for Lymphoid malignancies, BTK inhibitors, Venetoclax, other drugs and regimens, as well as side effects and used VoCP to analyze these messages for relevant information.
Results:
We found 7,456 messages, provided by 928 users, regarding Ibrutinib, Acalabrutinib and Ventoclax that contained clinically relevant information.
Ibrutinib Out of 6,082 messages from 617 users discussing Ibrutinib, 1,913 messages written by 352 users mentioned experience with the drug. 283 patients had CLL, 19 had mantle cell lymphoma, 10 had follicular lymphoma, 1 had small lymphocytic lymphoma, 1 had Walderstorm's Macroglobulinemia, and 1 had marginal zone lymphoma and 37 had b-cell lymphoma unspecified 22 patients mentioned the use with Obintuzumab and 16 patients mentioned it's use with Rituxan, 4 patients mention its use with Nivolumab on clinical trail 202 users discussed one or more side effects in 671 messages. 27 messages mentioned Atrial fibrillation with 12 other as heart problems, bleeding and easy bruising was mentioned in 70 messages. Most common side effect was muscle and joint pain followed by fatigue and rash and interstitial nephritis. 159 users shared 498 messages with positive sentiment whereas 74 users shared 223 messages with negative sentiment.
Acalibritinib Out of 638 messages from 179 users discussing Acalabrutinib, 138 messages written by 40 users mentioned experience with the drug. 35 patients had taken it for CLL and 5 patients for Lymphoma. 10 users discussed one or more side effects in 72 messages. No atrial fibrillation and 15 messages mention bleeding problems 16 users shared 16 messages with positive sentiment whereas 4 users shared 4 messages with negative sentiment. 3 users mention its use in combination with Rituximab, 3 users with Obintuzumab and 2 with pembrolizumab on clinical trial.
Venetoclax Out of 736 messages from 123 users discussing Venetoclax, 184 messages written by 56 users mentioned experience with the drug. 48 patients had taken it for CLL and another 4 patients had taken it for acute myloid leukemia, 2 patients had taken it for Lymphoma. 15 users discussed one or more side effects in 74 messages. 11 messages mention TLS One patient mentioned that Carvedilol increase the Venetoclax toxicity 25 users shared 65 messages with positive sentiment whereas 7 users shared 7 messages with negative sentiment. 16 users mentioned its use in combination with Obintuzumab and 3 patients with Rituxan
Side effects for all three drugs are provided in the table below.
Conclusion:
BTK inhibitors and Venetoclax provide new treatment options for high risk CLL and B cell malignancies with favorable side effect profile, and most patients have positive sentiments regarding them.
VoCP reliably provides the insights into patient's view of their disease, treatment and side effects and highlight the areas of unmet needs where research and resources should be focused.
Table. Table.

Disclosures
Aggarwal: Scry Analytics, Inc.: Equity Ownership. Aggarwal:Scry Analytics, Inc.: Equity Ownership.