Veno Govender, diagnosed with multiple myeloma

My name is Veno Govender. I’m from South Africa in the city of Cape Town. A plasmacytoma was found in my right humerus in December 2016. Since then I have had a humerus replacement, Chemo and a SCT

Further to that upon all the tests and two biopsies pre-op and post-op, it was found that my bone marrow had 60% malignant cells. I also went for 5 treatments of radiation on my humerus. I am on my 2nd cycle of induction therapy. My regimen is Velcade, cyclophosphamide, and dexa¬metha¬sone. I have an excellent specialist.

In South Africa we don’t have excess to social grants to assist us in leaving work and dealing with our illness. So as a 47 year-old single mum, it’s impacting my stay away from work as well as quality of life. I’m anemic and the fatigue and lack of energy is challenging. I was put on 1mg Lenalidamide in April 2017 . The medication in South Africa is pricey. It would have cost me R75,000 for a month’s supply – every month. My only option was to ask a friend to bring it from India. Luckily I knew someone going back and forth at that time. Even so it still cost me R1700 to pay the person for the meds they brought me. Imagine most Myeloma patients on a state pension of R1000 per month. How do our aged patients support themselves and maintain their illness?

I took Lenalidomide for a year and then couldn’t afford it. I then decided to go for my SCT last year in 2018. Currently I am awaiting my doctor’s instruction as to the regime he will recommend for me. I am guessing it will be maintenance treatment of Lenalidomide. My fear is how do we get this medication available in our country at a reasonable price?

Does this government want to see all our myeloma patients suffer and die without proper treatment? I will support this cause to have my voice and others heard.

We stand together in this for we know the pain we endure.