Kicking off with a bit of personal bio: 61 years old; accountant, retired; married 28 years; 3 kids; 2 grandkids (freshly minted); 2 bolshy dachshunds.
In 2010 I went in for an ultrasound scan to investigate a urinary tract infection (UTI), which refused to clear up after the normal antibiotics. Ultrasound identified 2 tumours on my left kidney, each being a few cm in length, so they had been there for a while. They were removed in June 2010, and the biopsy confirmed carcinoma. Choosing the Royal Free Hospital in Hampstead on recommendation, I was placed on a trial for sorafenib for 6 months, but couldn’t cope with the side effects (like most people as I was subsequently to learn).
In early 2011, a sharp-eyed radiologist spotted a fistula connecting my colon to the bladder, down which some faecal material had been travelling. Small wonder my UTI wouldn’t go away. An operation to solve that was carried out, and thereafter I was down to regular CT scanning for any sign of secondaries.
All was good until early 2013, when an ‘area of concern’ was identified in my left lung. Subsequent biopsy of material from there confirmed a metastasis, that autumn. In February 2014 I was put on sunitinib, an entry-level tyrosine kinase inhibitor (TKI). The dosage was 50mg given on a 6 week cycle of 4-on treatment, 2-off. I quickly switched to a 2-on, 1-off cycle as more manageable, but still found 50mg tough, especially as my weight fell away. After a couple of emergency hospitalisations in the autumn of that year, my oncologist switched me to 37.5mg, which she felt could still do the primary job of containing my tumours, but be more tolerable in terms of quality of life. I have been on that dose ever since, with no evidence of additional disease; a good run as sunitinib has a median success of 2 years.
Side effects for me are significant: fatigue; diarrhoea and other gastric issues; a sense of extreme cold; thyroid problems; raised blood pressure; itchy skin; general immunosuppression. All these are manageable in different ways. For example, I have learnt that my diarrhoea seems to relate to malabsorption of fat so, as well as loperamide, I manage my diet carefully. The cocktail of side-effects that each person experiences, is unique in both its make-up and severity, and can even vary from cycle to cycle for an individual. From talking to others, I seem to be getting off fairly lightly.
The emotional side of cancer is important too. I have decided to be honest with family and friends from the start, and they make allowances for my occasionally impaired functioning. As a member of KCSN I value immensely the support I get from the Facebook page that is the closed group for patients and their partners. I don’t feel as if I’m fighting cancer. That is being done by the drug companies that develop these new lines of defence, the groups like KCSN that lobby NICE to approve use in the NHS, and the oncologists who prescribe them. If anything I am just the battlefield, occasionally churned up, but also the beneficiary.
And what a benefit. Had this happened 15 years ago I would have been long dead. Since my diagnosis I have used up my bonus years doing all the things I put off during the working years:
My wife and I have travelled to New York where I have close family; to Venice, the most beautiful city on earth, I think; to Uganda where our youngest daughter works; and back to Paris where we had our honeymoon decades ago. I went to South Africa on rugby tour with my beloved Club. Additionally I took over as President of my Club for a three year term, soon to finish. Recently we welcomed into the world our first two grandchildren, something that I might never have been alive to see. Life is busy and good.
[sayit block="1" lang="en-GB" speed="1"]Kicking off with a bit of personal bio: 61 years old; accountant, retired; married 28 years; 3 kids; 2 grandkids (freshly minted); 2 bolshy dachshunds.
In 2010 I went in for an ultrasound scan to investigate a urinary tract infection (UTI), which refused to clear up after the normal antibiotics. Ultrasound identified 2 tumours on my left kidney, each being a few cm in length, so they had been there for a while. They were removed in June 2010, and the biopsy confirmed carcinoma. Choosing the Royal Free Hospital in Hampstead on recommendation, I was placed on a trial for sorafenib for 6 months, but couldn’t cope with the side effects (like most people as I was subsequently to learn).
In early 2011, a sharp-eyed radiologist spotted a fistula connecting my colon to the bladder, down which some faecal material had been travelling. Small wonder my UTI wouldn’t go away. An operation to solve that was carried out, and thereafter I was down to regular CT scanning for any sign of secondaries.
All was good until early 2013, when an ‘area of concern’ was identified in my left lung. Subsequent biopsy of material from there confirmed a metastasis, that autumn. In February 2014 I was put on sunitinib, an entry-level tyrosine kinase inhibitor (TKI). The dosage was 50mg given on a 6 week cycle of 4-on treatment, 2-off. I quickly switched to a 2-on, 1-off cycle as more manageable, but still found 50mg tough, especially as my weight fell away. After a couple of emergency hospitalisations in the autumn of that year, my oncologist switched me to 37.5mg, which she felt could still do the primary job of containing my tumours, but be more tolerable in terms of quality of life. I have been on that dose ever since, with no evidence of additional disease; a good run as sunitinib has a median success of 2 years.
Side effects for me are significant: fatigue; diarrhoea and other gastric issues; a sense of extreme cold; thyroid problems; raised blood pressure; itchy skin; general immunosuppression. All these are manageable in different ways. For example, I have learnt that my diarrhoea seems to relate to malabsorption of fat so, as well as loperamide, I manage my diet carefully. The cocktail of side-effects that each person experiences, is unique in both its make-up and severity, and can even vary from cycle to cycle for an individual. From talking to others, I seem to be getting off fairly lightly.
The emotional side of cancer is important too. I have decided to be honest with family and friends from the start, and they make allowances for my occasionally impaired functioning. As a member of KCSN I value immensely the support I get from the Facebook page that is the closed group for patients and their partners. I don’t feel as if I’m fighting cancer. That is being done by the drug companies that develop these new lines of defence, the groups like KCSN that lobby NICE to approve use in the NHS, and the oncologists who prescribe them. If anything I am just the battlefield, occasionally churned up, but also the beneficiary.
And what a benefit. Had this happened 15 years ago I would have been long dead. Since my diagnosis I have used up my bonus years doing all the things I put off during the working years:
My wife and I have travelled to New York where I have close family; to Venice, the most beautiful city on earth, I think; to Uganda where our youngest daughter works; and back to Paris where we had our honeymoon decades ago. I went to South Africa on rugby tour with my beloved Club. Additionally I took over as President of my Club for a three year term, soon to finish. Recently we welcomed into the world our first two grandchildren, something that I might never have been alive to see. Life is busy and good.[/sayit]
