Audrey Smith
I had a catering business and was used to working long hours. However, when I began to feel continuously tired, I thought I was getting older!
After two bouts of pneumonia, my doctor sent me to haematology at Palmerston North Hospital and I was diagnosed with CLL in August 2016. It was agreed we would monitor the blood counts as I had a full and busy life... I was selling my business, moving to Hawkes Bay and I had family commitments.
In January 2018, I started chemotherapy treatment: rituximab and bendamustine (5 x bendamustine, 4 x rituximab) on a 28 day cycle at Palmerston North Hospital.
The results in May 2018 showed only a partial response (50% lymphocyte count decline), but residual marked lymphocytosis, persistent adenopathy, progressive anaemia, and treatment-related nausea. My haematologist said she had hoped to give my results an A Plus, but instead it was only a B Minus.
The future looked very bleak and it is never a good sign when a doctor speaks to you about quality of life. However, there was a possible solution, perhaps……
My doctor would see I if was eligible for a trial using a drug, venetoclax. I was so thrilled to be accepted, however, before treatment could begin, I was admitted to hospital with severe pneumonia, yet again.
Treatment in Wellington with venetoclax commenced June 2018 on the VENICE – II trial.
The initial introduction of the drug was carefully monitored for 6 weeks but the immediate results were amazing! I expected to feel some side effects, however, my body adjusted very well and within the first six weeks, I just felt so much better than I had for years!
For me, venetoclax has been like a miracle drug. I have been on it for one year and feel I have been given a new gift of life. I am in remission. I’ve been able to resume private catering and follow an exercise regime that includes aquaerobics and walking.
I have not felt so well for about 5 years and cannot believe how lucky I have been to be accepted for the venetoclax trial, as I was not in a position to self fund.
Many others are not nearly as fortunate as myself and suffer dreadfully with the current treatment offered to CLL patients; and possibly like me, their disease does not respond well to the standard treatment. I truly believe that Pharmac should be more flexible with its funding model and look to fund this incredible drug. Without the trial, I think my quality of life would be ghastly and I would become much more of a drain on the public hospital services.