Volleen White is a Chronic Lymphocytic Leukemia, B-Cell type, Stage 4 patient. She was diagnosed in 2007 and was in watch and wait status until 2018 when she began Rituxan antibody treatment weekly for 8 weeks. Her condition improved a few months later, but remission was not achieved. Now, two years later she is doing well, but is back in watch and wait status again. More treatment should not be necessary for several years. At age 77 she is a survivor and a fighter.
Volleen is a retired Registered Nurse. She graduated in 1964 and worked full time until she retired. She got her RN from St. Mark’s School of Nursing and Westminster College in Utah. She did part-time studies and got her BS in Psychology at St Joseph’s College in Maine and did Post Graduate work obtaining a PhD many years later. She continues to study and learn new things every day.
She worked in many areas in the hospitals, especially the Operating Room for about 20 years, and Obstetrics for about 3 years. She worked in Home Health for many years as a Psychiatric Nurse and was Director of Nursing for a large Medical Clinic for 5 years.
She says she really enjoyed helping people.
She is now looking forward to helping people through her association with Patient Empowerment Network as a CLL Survivor and advocate.
A: Chronic Lymphocytic Leukemia, B-Cell type, not achieving remission. Stage: Both RAI and Binet method: Stage 4.
This includes enlarged lymph nodes, elevated Lymphocyte count, enlarged spleen, enlarged liver, anemia, lowered platelet count, and extreme fatigue.
What was your treatment path?
A: I was in watch and wait status from 2007 until 2018.
All diagnostic tests were done including genetic testing, bone marrow biopsies, CAT scans of chest, abdomen, and pelvis, also frequent CBC, and Blood Chemistry tests.
In August of 2018 I began an 8-week treatment of Rituxan IV weekly every Monday and lab every Friday. (Rituxan is an antibody treatment, not a chemotherapy. It helps a person’s own the immune system destroys the cancer cells.)
I finished treatment in October 2018, just 2 years ago. Finally, in January of 2019 my Lymphocyte counts returned to normal. Now in October of 2020 my counts are starting to increase again, but doing so slowly. More Rituxan will not be needed for several more years.
The extreme fatigue remains to this day. Now at age 77, I am back to watch and wait status again.
As a PEN Network Manager, what are your interests and how are you helping other patients?
A: I am interested in learning more about blood cancers and their treatments. I have always loved science and continue to study and learn all the time. With this knowledge, I hope to pass on my information to others and help then to advocate for themselves in their own cancer journey.
How has cancer affected your life?
A: Until about 2016 it had no effect other than fatigue on my life. Then from 2016 to 2018 I started having more infections, more fatigue, more bruising, a decrease in appetite, and just not feeling good at all. Then I had my Rituxan treatment and had to be careful for several months. I was just starting to get out of self-imposed isolation when COVID arrived, and now I am back in isolation again. I live alone and I am lonely. My two grown daughters live in other states and my grandchildren ages 12 and 9 have not been able to visit since COVID.