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8 August 2018

Hamish's Story

Lessons on Life and Mantle Cell Lymphoma

By Hamish

I have always been lucky. Lucky in finding a wonderful wife, lucky in my career, lucky with our children and lucky with my health – until now.

I am a 70 year old male who was lucky enough to be able to retire when I was 57 years old. When I did, I realised that this last phase of life was most likely going to end with major health issues. I made a commitment to myself that I would stay as fit and healthy as possible for as long as possible as this seemed to be the best way forward towards my ultimate demise. we all know that life is a sexually transmitted terminal disease and so the only question is the interim process of living.

Since retirement, I have worked at having fun in healthy pursuits including learning several new sports. I have competed successfully in sailing, rowing, badminton, golf and athletic throwing events. Last year, my wife and I sailed our yacht out of Pittwater in June to explore Queensland’s offshore islands returning in December. On returning home, little did I understand that the small lump on my neck would turn my world upside down.

My GP was cautious and careful and sent me off for an ultrasound, and then a fine needle biopsy. My Christmas present was to be told that I had non-Hodgkin’s lymphoma, possibly mantle cell lymphoma. Being Christmas, it was difficult to get to see any specialists and so we had to wait for a long month before our first consultation. My wife and I were not totally happy with the first opinion and so we asked our GP for a second referral to Peter MacCallum Cancer Centre. They accepted me and immediately arranged for a bone marrow biopsy and PET scan. Our first consultation with one of their Haematology Fellows confirmed that it was mantle cell lymphoma (MCL) and that almost 70% of my bone marrow was affected. We discussed moving towards starting chemotherapy using an aggressive protocol, but they wanted to do more tests before starting. On the Friday afternoon before starting chemo, they called to say that the additional tests showing that I had a mutation on my TP53 gene and that they knew that this greatly reduced the probability that chemo would work and hence they cancelled it.

How to treat my MCL was an interesting discussion as there were no precedents for frontline treatment other than chemo. The Peter Mac team had done some work on immunotherapy, targeted treatment using two newish drugs, Ibrutinib and Venetoclax, but only for patients who had prior chemo. they had no current trials and hence we agreed to buy these drugs ourselves if necessary. One of the drug companies agreed to make their drug available on a compassionate basis and hence I started on Ibrutinib, followed 5 weeks later with Venetoclax. I developed most of the listed side effects, but they were all tolerable with only short-term periods where they changed how I could live my life. After 15 weeks of Ibrutinib and 10 weeks of Venetoclax, I did a new bone marrow biopsy and PET scan. I was really apprehensive ahead of these because of this novel treatment regimen. When I got the results, I struggled to believe them. My bone marrow was now only 0.03% affected and my PET scan was totally clear. Remission! What a wonderful word. Maybe I am still very lucky.

There is still the question about how to go forward from here. A bone marrow transplant is on the radar and they have found 3 perfect matched donors, so this seems like a great approach to cure an incurable disease. There are also some new drug options that could be an alternative as well. Only time will tell, and it looks like I might have enough time to find out. Lucky, hey.

Category: Patient Stories
Tags: Hamish MCL Ibrutinib mantle cell,