Patient stories

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Patient stories

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.

Ben Schrader

I‘d been getting breathless while exercising and generally feeling off colour. It was just the flu, I thought. I finally went to my GP in March 2012 and he took a blood test. A few hours later I was in Wellington Hospital. My red blood cell (haemoglobin) count was below safe levels and I was very sick.

Following tests, the doctors told me I had Chronic Lymphocytic Leukaemia (CLL). It was a huge shock. Was this a death sentence? Not necessarily, I was reassured. My type of CLL started with autoimmune haemolysis anaemia, where my spleen was destroying red blood cells faster than they could be replaced. This was treated by blood transfusions and a six-month chemotherapy course. After each round I spent days throwing up and feeling crap, but the treatment worked and I went into remission.

My CLL came back in 2015 and I had further treatment. It returned within 12 months. This time blood transfusions were unable to stop my haemolysis. I needed a splenectomy. I was in no state to have major surgery, but it was that or certain death. Happily, I came through. My haematologist suggested that my CLL might be treated with a new drug ibrutinib. The drug company was giving it to some patients with view that Pharmac would fund it once its efficacy was shown. I was accepted just before the window closed.

I’ve had no discernible side effects ibrtinib and without it my CLL would have returned. The drug has allowed me to keep working and be fully available to my family and friends. I feel great. It would be wonderful if other CLL patients could too. The cause of CLL is still unknown. Getting it appears to be a case of bad luck, but access to ibrutinib shouldn’t be left to chance.

Graham Adams

When your GP tells you your haematologist’s report “makes for grim reading”, you know you’re in trouble. I had that experience in early 2015 — two years after having been diagnosed with chronic lymphocytic leukaemia (CLL) and shortly after being given the news I also had chromosome 17p deletion, the dreaded genetic marker no CLL patient wants to harbour.

The deletion of 17p has traditionally meant a very poor prognosis. Chemotherapy-based treatments simply don’t work for the vast majority of such CLL patients and that was all that was on offer through the public health system when I needed treatment. I have read that its success rate is as low as five per cent.

I realised I was unlikely to get out of this predicament alive unless I had an alternative to chemotherapy. I had heard about the new targeted drugs like ibrutinib that seemed to take 17p deletion in their stride, but I knew they weren’t publicly funded in New Zealand — even though they were already being heralded as a “game-changer” for certain blood cancers, including high-risk CLL patients like me.

So I decided, in consultation with my haematologist, that I would use up a chunk of my retirement savings to pay for a year’s supply of ibrutinib at $10,000 a month in preparation for a stem cell transplant.

And then, just as I was about to make my first $10,000 payment, I had the good fortune to learn of a clinical trial in Auckland that was designed to pit ibrutinib and obinutuzumab against an old chemotherapy agent, chlorambucil, also paired with obinutuzumab.

I was lucky enough to be accepted as a patient but I ended up on the arm without ibrutinib and you’d have to say the chlorambucil-obinutuzumab regimen wasn’t a raging success. My lymphocyte count dropped sharply from around 200 to 12 but my lymph nodes contracted only by 20 per cent. My bone marrow was still stuffed with CLL cells.

Within a month of finishing the six-month trial, my lymphocyte count had shot up, and the lymph nodes in my neck had swollen to once again make me look like a chipmunk.

At that point, under the terms of the clinical trial, I was eligible for free access to ibrutinib but my haematologist had a separate trial under way for a second-generation form of ibrutinib, then called BGB-3111 (now zanubrutinib).

Three and a half years later, after slow, steady improvement, my blood counts are all normal. My crushing fatigue, that in 2016 was so severe I was nearly entirely housebound and had to be wheeled along hospital corridors, has improved so dramatically that this year I have been able to average 6km walking a day.

I still tire easily but I am alive and well. I describe it as my “Lazarus experience”. Zanubrutinib has brought me back from the near-dead.

My New Zealand-born brother is an Australian citizen who lives in Brisbane. If he were to be diagnosed with CLL with 17p deletion like me, he would have access to ibrutinib for less than $40 a month under the Australian public health system. If and when that failed, he would be able to access another wonder drug, venetoclax, also for a minimal charge.

In short, Australia’s health system offers a Lazarus experience for patients with high-risk CLL while New Zealanders who aren’t lucky enough to be accepted onto a clinical trial or rich enough to pay can currently expect only a place on death row.

Ian Hibberd

I was diagnosed with Chronic Lymphatic Leukaemia in 2006 while I was living in Hawke's Bay. At the time I was a fit and healthy marathon runner with no signs of a health issue. From 2006 until November 2012 it was a case of having quarterly blood tests and a watch and wait brief. I continued to lead a very normal lifestyle, barely noticing my affliction.

August 2012 I moved to Lower Hutt for employment reasons (Public Servant – Ministry of Education) and in December 2012 I was admitted to the emergency ward for ITP (platelets had a reading of 2). From December 2012 until September 2013 I had 5 courses of FCR chemotherapy, no platelet response from the treatment and the CLL was unscathed! A laparoscopic splenectomy was carried out in March 2013 and I started on a new drug eltrombopag. This was successful in stabilising my platelets and I stopped taking the drug in September 2017.

During this period I also had a CLL relapse (progressive lymphadenopathy) and it was ascertained I was 11q deletion (11q-). In April 2015 I was given access to ibrutinib on compassionate grounds. Presently I am taking ibrutinib (280mg) daily along with cotrimoxazole (480mg) and this is maintaining my health.

The difference ibrutinib has made to my life is dramatic, with only minor side effects, and I have been able to have a normal life again. I work full-time, I exercise and I’m healthy. I’m very happy with that, as previously the state of my health was precarious.

My family and I are truly grateful, for giving me another chance at life.

Neil Graham

I was diagnosed with chronic lymphocytic leukaemia in 2000 just after my 50th birthday. I had several treatments over the next 15 years, but was generally well and active, and continued working as a physician with the Bay of Plenty District Health Board.

About five years ago my disease went out of control. I developed blood transfusion-dependent bone marrow failure. My lymphocytes peaked at almost one thousand times the normal range. My days were clearly numbered. The only treatment option was a new medicine that was registered but not funded in New Zealand, and I was lucky enough to become the first CLL patient to get this therapy on a compassionate access programme.

Over the following months my bone marrow largely recovered and my wellbeing returned. I remain in a state described as “a complete remission”. I am working, teaching, researching, and paying taxes. I’m physically active (eg 300+ km back country mountain biking in a week recently), enjoying life, and I am alive. What has happened medically to me has been remarkable, professionally and personally.

Five years on, the compassionate access programme is closed to new entrants, the medicine and others like it that have since become available are still not funded, and people are dying as a result. The treatment I’m on is funded in 23 countries with similar or lower wealth than New Zealand, the lowest on the scale being Brazil, Columbia and Albania. All 23 of these countries have looked at the same evidence reviewed by Pharmac, and decided to fund this life-saving drug. But Pharmac has looked at that evidence and judged that lives such as mine are not worth saving.

Mike Godfrey

I was born in January 1938 and am a retired GP who was eventually diagnosed with CLL nearly 4 years ago after increasing debilitating fatigue initially thought to be a persistent viral infection.

My lymphocyte count progressively increased from 25,000 in April 2019 to peak at 240,000 by October 2020 together with a falling Hb eventually levelling at 80.

This was despite all the naturopathic treatments to which I had access including regular intravenous vitamin C and blood ozone. By May 2021, as my spleen was enlarging, I decided following my Oncologist’s recommendation to start Ibrutinib albeit with the much cheaper Indian generic at $2000/month.

There were no obvious side effects. Weekly blood tests revealed a rapid reduction by nearly 50% by the end of the first month when my enlarged spleen was no longer palpable. I reduced the daily 3 capsules to 2 and at the end of the second month my lymphocyte count had further decreased to 14,000.

In February 2021, I developed an acute urinary retention requiring urgent catheterization. However, during the procedure my bladder wall was perforated. A subsequent prostatectomy was followed by persistent episodes of painful bladder bleeding requiring repeated transfusions.

I was advised to stop the ibrutinib as enhanced bleeding was listed as a risk. However, both the bleeding and painful cystitis were controlled once the suprapubic catheter site was moved to a higher place in the bladder wall. I restarted ibrutinib.

Concurrently, as of December 2022, my Hb is 93 and my total WBC is 10,000 with Lymphs 5000. Subject to my Oncologist’s approval, I plan to further reduce the ibrutinib to 1 capsule a day if the lymphocyte count reaches the reference range and is confirmed by monthly blood tests.

Right through, I have maintained a daily oral intake of vitamin D 5,000 iu, vit C 4gm in divided doses, N-Acetyl Cysteine 400mg, as well as my heart and bladder supplements.