I guess few kidney cancer victims know exactly when their kidney(s) turned cancerous, but by the time Deric was diagnosed the tumour was over 7 cm and appeared to engulf much of his right kidney.
2011
At 63 years old, he started losing weight and became impotent. He asked our GP for a ‘well man check up’ but was told he looked OK and didn’t need a blood test as the one in 2009 was fine. The doctor offered Viagra for the impotence – his offer was declined.
2012
July: We moved home and joined a new GP surgery where blood tests were required as part of the joining process.
Deric’s blood results were bad and the doctor kept asking if he was a ‘drinker’. Deric rarely drinks alcohol; he eats healthily and gets loads of exercise. The only thing he could offer the GP was he suffered from acid reflux. The doctor arranged an endoscopy and gastroscopy – the results showed Deric had Barratt’s oesophagus but everything else was fine. An anti-acid drug was prescribed and another blood test arranged.
Again, the results were terrible and the GP organised a chest X-ray which came back clear. We were called in again and the doctor mentioned he had considered cancer but now ruled it out, especially as Deric appeared so fit and well. More bloods were taken.
October: The GP decided to consult the Hospital. They said with blood results like that they would scan him right away. He asked Deric if he wanted to be admitted urgently to hospital. Well he didn’t feel poorly so didn’t think it was ‘urgent’ and opted to wait for a routine scan – another two weeks.
November: Devastating news! There was a tumour on his right kidney and surgery was required. Thankfully there was no sign of further spread and the prognosis didn’t sound too bad.
The waiting list was long and the surgeon was going on holiday. It was another 44 days of cancer growth before Deric could have his surgery. By then he was getting bad night sweats and something strange was happening to his eyesight. He had migraine-type symptoms with strange blank and blotchy areas in the vision in one eye. Being an engineer he was terrified of losing his sight and spent hours researching what was happening. He concluded his chaotic bloods were likely affecting the vessels in his eye – it seemed related to the kidney and the cancer. I called the kidney consultant’s secretary begging her to bring Deric’s surgery forward but she brushed off his findings, declaring it unlikely the eyesight issue and cancer to be connected – some months later it was established by a specialist at the eye hospital that it was very much connected. It was an occlusion caused by a tiny clot blocking the output (drainage) side of the main vessel in the eye.
December: Deric had a full nephrectomy and was discharged on Christmas Day. The surgeon was confident he had got all the cancer as it was still contained within the outer capsule. There was no evidence of cancer in any lymph nodes.
He had survived kidney cancer! Or so we thought.
2013
The surgeon recommended a trial for a drug called sorafenib – designed to help prevent the return of cancer in patients who had surgery to remove tumours but no evidence of further disease.
February: Deric started the trial but the drug was too toxic and the side effects unbearable.
May: The oncologist took him off sorafenib. The next scan was clear, so we were fairly relaxed about it.
August: We celebrated our Silver Wedding Anniversary and Deric seemed healthier and happier than I’d seen him in years. He put weight back on and the impotence was gone! Life was good.
The next scan results came in on Saturday 24 August.
The cancer had returned to his lungs. The GP said there was no cure, it was terminal.
We were completely broken and in shock. It was the longest and worst 3 nights of our lives before we were able to see a counsellor and the oncologist at the hospital. She reassured us there were just two small nodules in his lungs and there was a new biotherapy TKI drug called pazopanib which might hopefully shrink them and prevent further growth.
September: Deric started taking the drug and I researched everything to do with kidney cancer. It became clear pazopanib was a temporary solution. No two people respond the same, but the average response time seemed to be around 12 months. The more I read, the more darkness descended over our lives. I kept typing the words ‘kidney cancer cure’ into the various search engines – the results were depressing. But there was one glimmer of hope.
I read about an immunotherapy treatment called high dose interleukin 2 (HD IL2). The treatment had been used since the 1990’s for kidney cancer but the side effects could be very severe and only a small percentage of people got a ‘complete response’. But the glimmer of hope was that most of these went on to be permanently disease-free.
This was ‘hope’ and everyone needs hope. I printed off the details of the treatment and the Professor at the Christie Hospital who was asking doctors to refer their kidney cancer patients. I sent it to our GP asking him to refer Deric. The response was disappointing but better than nothing. He offered to refer Deric to the Marsden Hospital for a second opinion.
The Marsden confirmed the pazopanib prescription. I asked about IL2 treatment and the doctor was aware of it. She agreed to email the Professor at the Christie Hospital to check if Deric was suitable, however she thought the tumour, being grade 4, would rule him out. She told us her door was always open to Deric. We never heard from her again and never managed to get past the receptionist when we tried to follow up.
December: We went to the local GP Surgery Christmas party and I thanked him for the referral. His reply knocked the stuffing right out of me: “You do know that anything you do is futile Jo” he said.
2014
Pazopanib came with side effects. It turned Deric’s hair snow white and he got bad diarrhoea after taking each dose, but it gave us a good year with holidays and fun. It did a good job of shrinking the tumours.
November: The scan showed the cancer had spread to the lymph nodes in the chest. There were further lung nodules and there was a shadow on the liver. The oncologist stopped pazopanib immediately and prescribed another growth inhibiting drug called axitinib. I knew it was another temporary solution, but I was grateful for being given more time as I had a plan.
December: I wrote directly to the Professor at the Christie Hospital about IL2 treatment.
2015
January: I was shaking with excitement – he wrote back to me, with a copy to our oncologist requesting a referral and Deric’s histology. Then he’d let us know one way or the other if Deric might be suitable for the treatment. Our oncologist was very supportive and excited for us, she responded immediately.
March: We were in the Professor’s clinic discussing the plan. A heart stress test was required as the IL2 treatment is tough and a baseline scan would be arranged, but in principle it looked like Deric was an ideal candidate for the treatment. The only concern – the remaining kidney was functioning around 25-30% which may restrict the amount of treatment he could receive.
Thrilled but apprehensive, Deric embraced this opportunity. He spent the next few weeks hill walking, cycling and visiting the gym to improve his fitness levels. He passed the heart pressure test with flying colours. He was taken off axitinib for 5 weeks and was to be admitted for his first cycle of IL2 in June.
We bought a campervan to enable us to travel to and fro between Devon and Manchester over the coming months and for me to stay near the hospital during treatment episodes. Over the next nine months, this campervan became more of a home than our own home, she became my reassuring companion during the long, worrying nights alone whilst Deric was undergoing treatment and despite being 15 years old, she travelled over 4000 miles of the M5 and M6 without missing a beat. We named her Patience.
June: Cancer puts us in a very lonely place, but when faced with being alone, miles from home, supporting your loved one through a gruelling treatment, social media is a lifeline that cannot be underestimated. I already had the support of many friends using Facebook as a method to ‘meet and chat’ each evening. But none of them REALLY understood what we were going through. Two other patients undergoing IL2 treatment told me about a private Facebook Group called Kidney Cancer Support Network. I joined immediately and it was like walking into a room of people I’d known for years. They seemed to understand everything we were going through. We could share things we couldn’t discuss with other friends and family; and they KNEW, they just KNEW. And they have their finger on the pulse, with the latest news and treatments relating to this awful disease. I am so grateful there are people dedicating their time to give kidney cancer patients the support, information and representation they so badly need. I wished I’d found them years earlier – things could have been so much easier for us.
Deric’s remaining kidney struggled to cope with the IL2 and it severely restricted the number of doses he could receive. It also increased his recovery time. The first two courses (one cycle) saw him receiving 8 and 6 doses respectively. It didn’t seem a bad result, but we had naturally hoped for more. The scan however showed a ‘good’ response – the disease appeared to be ‘stable’ – it had not grown since the baseline scan. The Professor reduced the dose for the second cycle, but his kidney only accepted 6 and 4 doses this time. We tried to hide our disappointment. It was looking unlikely Deric would get a complete response now. But we consoled ourselves that stable disease is actually a good response and can have longevity. We also wondered if the Professor would allow the treatment to continue as Deric’s creatinine levels were rocketing sky high with nearly every dose and he recommended referral to a nephrologist.
November: Our fears were allayed. The scan results were looking very positive, there was a small shrinkage of the cancer and the Professor worked out a programme which gave Deric’s kidney more time to recover between courses. He was determined not to give up on Deric. I allowed myself the luxury of a little dream “he’s going for cure” I said to myself.
2016
January: The third cycle was split with a six week break between the two courses to allow the kidney time to recover; but Deric’s kidney only managed 4 and 4 doses. It was disappointing, but this time he already had ‘partial response’ in the bag which was a good outcome. It was a reason to relax and allow ourselves a holiday with Patience in Spain – and a bit of a celebration.
March: The third scan took place on the 1st. The Professor booked us into his clinic that same evening. His words will remain imprinted on my mind:-
“It’s gone” he said
“What’s gone?” I tentatively asked in a squeaky voice, gripping Deric’s arm to steady us both … “the cancer?”
“Yes” said the Professor with a hint of a grin
He took us to see the scan and showed us there was no evidence of cancer. He wanted to wait for the final radiographer’s report to be certain, but it looked like we had a complete response.
There was an added bonus. The blood test results showed a dramatic improvement in Deric’s kidney function. We saw the nephrologist the following day. The theory – tiny cancer cells may have been blocking the blood vessels in the kidney and these would now have cleared.
On 7 March we got the news over the phone:-
“The radiographer confirms the cancer has gone, it’s a complete response” said the Professor.
“Will this have longevity?” asked Deric, almost disbelieving.
“Forever and a day” said the Professor.
I confirm permission for the Kidney Cancer Support Network to use this story and to edit it with my further approval for their website. However, I reserve all rights and ownership of this story, which I may incorporate into a book or further story at a later date.
[sayit block="1" lang="en-GB" speed="1"]
I guess few kidney cancer victims know exactly when their kidney(s) turned cancerous, but by the time Deric was diagnosed the tumour was over 7 cm and appeared to engulf much of his right kidney.
2011
At 63 years old, he started losing weight and became impotent. He asked our GP for a ‘well man check up’ but was told he looked OK and didn’t need a blood test as the one in 2009 was fine. The doctor offered Viagra for the impotence – his offer was declined.
2012
July: We moved home and joined a new GP surgery where blood tests were required as part of the joining process.
Deric’s blood results were bad and the doctor kept asking if he was a ‘drinker’. Deric rarely drinks alcohol; he eats healthily and gets loads of exercise. The only thing he could offer the GP was he suffered from acid reflux. The doctor arranged an endoscopy and gastroscopy – the results showed Deric had Barratt’s oesophagus but everything else was fine. An anti-acid drug was prescribed and another blood test arranged.
Again, the results were terrible and the GP organised a chest X-ray which came back clear. We were called in again and the doctor mentioned he had considered cancer but now ruled it out, especially as Deric appeared so fit and well. More bloods were taken.
October: The GP decided to consult the Hospital. They said with blood results like that they would scan him right away. He asked Deric if he wanted to be admitted urgently to hospital. Well he didn’t feel poorly so didn’t think it was ‘urgent’ and opted to wait for a routine scan - another two weeks.
November: Devastating news! There was a tumour on his right kidney and surgery was required. Thankfully there was no sign of further spread and the prognosis didn’t sound too bad.
The waiting list was long and the surgeon was going on holiday. It was another 44 days of cancer growth before Deric could have his surgery. By then he was getting bad night sweats and something strange was happening to his eyesight. He had migraine-type symptoms with strange blank and blotchy areas in the vision in one eye. Being an engineer he was terrified of losing his sight and spent hours researching what was happening. He concluded his chaotic bloods were likely affecting the vessels in his eye – it seemed related to the kidney and the cancer. I called the kidney consultant’s secretary begging her to bring Deric’s surgery forward but she brushed off his findings, declaring it unlikely the eyesight issue and cancer to be connected – some months later it was established by a specialist at the eye hospital that it was very much connected. It was an occlusion caused by a tiny clot blocking the output (drainage) side of the main vessel in the eye.
December: Deric had a full nephrectomy and was discharged on Christmas Day. The surgeon was confident he had got all the cancer as it was still contained within the outer capsule. There was no evidence of cancer in any lymph nodes.
He had survived kidney cancer! Or so we thought.
2013
The surgeon recommended a trial for a drug called sorafenib – designed to help prevent the return of cancer in patients who had surgery to remove tumours but no evidence of further disease.
February: Deric started the trial but the drug was too toxic and the side effects unbearable.
May: The oncologist took him off sorafenib. The next scan was clear, so we were fairly relaxed about it.
August: We celebrated our Silver Wedding Anniversary and Deric seemed healthier and happier than I’d seen him in years. He put weight back on and the impotence was gone! Life was good.
The next scan results came in on Saturday 24 August.
The cancer had returned to his lungs. The GP said there was no cure, it was terminal.
We were completely broken and in shock. It was the longest and worst 3 nights of our lives before we were able to see a counsellor and the oncologist at the hospital. She reassured us there were just two small nodules in his lungs and there was a new biotherapy TKI drug called pazopanib which might hopefully shrink them and prevent further growth.
September: Deric started taking the drug and I researched everything to do with kidney cancer. It became clear pazopanib was a temporary solution. No two people respond the same, but the average response time seemed to be around 12 months. The more I read, the more darkness descended over our lives. I kept typing the words ‘kidney cancer cure’ into the various search engines – the results were depressing. But there was one glimmer of hope.
I read about an immunotherapy treatment called high dose interleukin 2 (HD IL2). The treatment had been used since the 1990’s for kidney cancer but the side effects could be very severe and only a small percentage of people got a ‘complete response’. But the glimmer of hope was that most of these went on to be permanently disease-free.
This was ‘hope’ and everyone needs hope. I printed off the details of the treatment and the Professor at the Christie Hospital who was asking doctors to refer their kidney cancer patients. I sent it to our GP asking him to refer Deric. The response was disappointing but better than nothing. He offered to refer Deric to the Marsden Hospital for a second opinion.
The Marsden confirmed the pazopanib prescription. I asked about IL2 treatment and the doctor was aware of it. She agreed to email the Professor at the Christie Hospital to check if Deric was suitable, however she thought the tumour, being grade 4, would rule him out. She told us her door was always open to Deric. We never heard from her again and never managed to get past the receptionist when we tried to follow up.
December: We went to the local GP Surgery Christmas party and I thanked him for the referral. His reply knocked the stuffing right out of me: “You do know that anything you do is futile Jo” he said.
2014
Pazopanib came with side effects. It turned Deric’s hair snow white and he got bad diarrhoea after taking each dose, but it gave us a good year with holidays and fun. It did a good job of shrinking the tumours.
November: The scan showed the cancer had spread to the lymph nodes in the chest. There were further lung nodules and there was a shadow on the liver. The oncologist stopped pazopanib immediately and prescribed another growth inhibiting drug called axitinib. I knew it was another temporary solution, but I was grateful for being given more time as I had a plan.
December: I wrote directly to the Professor at the Christie Hospital about IL2 treatment.
2015
January: I was shaking with excitement - he wrote back to me, with a copy to our oncologist requesting a referral and Deric’s histology. Then he’d let us know one way or the other if Deric might be suitable for the treatment. Our oncologist was very supportive and excited for us, she responded immediately.
March: We were in the Professor’s clinic discussing the plan. A heart stress test was required as the IL2 treatment is tough and a baseline scan would be arranged, but in principle it looked like Deric was an ideal candidate for the treatment. The only concern – the remaining kidney was functioning around 25-30% which may restrict the amount of treatment he could receive.
Thrilled but apprehensive, Deric embraced this opportunity. He spent the next few weeks hill walking, cycling and visiting the gym to improve his fitness levels. He passed the heart pressure test with flying colours. He was taken off axitinib for 5 weeks and was to be admitted for his first cycle of IL2 in June.
We bought a campervan to enable us to travel to and fro between Devon and Manchester over the coming months and for me to stay near the hospital during treatment episodes. Over the next nine months, this campervan became more of a home than our own home, she became my reassuring companion during the long, worrying nights alone whilst Deric was undergoing treatment and despite being 15 years old, she travelled over 4000 miles of the M5 and M6 without missing a beat. We named her Patience.
June: Cancer puts us in a very lonely place, but when faced with being alone, miles from home, supporting your loved one through a gruelling treatment, social media is a lifeline that cannot be underestimated. I already had the support of many friends using Facebook as a method to ‘meet and chat’ each evening. But none of them REALLY understood what we were going through. Two other patients undergoing IL2 treatment told me about a private Facebook Group called Kidney Cancer Support Network. I joined immediately and it was like walking into a room of people I’d known for years. They seemed to understand everything we were going through. We could share things we couldn’t discuss with other friends and family; and they KNEW, they just KNEW. And they have their finger on the pulse, with the latest news and treatments relating to this awful disease. I am so grateful there are people dedicating their time to give kidney cancer patients the support, information and representation they so badly need. I wished I’d found them years earlier – things could have been so much easier for us.
Deric’s remaining kidney struggled to cope with the IL2 and it severely restricted the number of doses he could receive. It also increased his recovery time. The first two courses (one cycle) saw him receiving 8 and 6 doses respectively. It didn’t seem a bad result, but we had naturally hoped for more. The scan however showed a ‘good’ response – the disease appeared to be ‘stable’ - it had not grown since the baseline scan. The Professor reduced the dose for the second cycle, but his kidney only accepted 6 and 4 doses this time. We tried to hide our disappointment. It was looking unlikely Deric would get a complete response now. But we consoled ourselves that stable disease is actually a good response and can have longevity. We also wondered if the Professor would allow the treatment to continue as Deric’s creatinine levels were rocketing sky high with nearly every dose and he recommended referral to a nephrologist.
November: Our fears were allayed. The scan results were looking very positive, there was a small shrinkage of the cancer and the Professor worked out a programme which gave Deric’s kidney more time to recover between courses. He was determined not to give up on Deric. I allowed myself the luxury of a little dream “he’s going for cure” I said to myself.
2016
January: The third cycle was split with a six week break between the two courses to allow the kidney time to recover; but Deric’s kidney only managed 4 and 4 doses. It was disappointing, but this time he already had ‘partial response’ in the bag which was a good outcome. It was a reason to relax and allow ourselves a holiday with Patience in Spain - and a bit of a celebration.
March: The third scan took place on the 1st. The Professor booked us into his clinic that same evening. His words will remain imprinted on my mind:-
“It’s gone” he said
“What’s gone?” I tentatively asked in a squeaky voice, gripping Deric’s arm to steady us both … “the cancer?”
“Yes” said the Professor with a hint of a grin
He took us to see the scan and showed us there was no evidence of cancer. He wanted to wait for the final radiographer’s report to be certain, but it looked like we had a complete response.
There was an added bonus. The blood test results showed a dramatic improvement in Deric’s kidney function. We saw the nephrologist the following day. The theory – tiny cancer cells may have been blocking the blood vessels in the kidney and these would now have cleared.
On 7 March we got the news over the phone:-
“The radiographer confirms the cancer has gone, it’s a complete response” said the Professor.
“Will this have longevity?” asked Deric, almost disbelieving.
“Forever and a day” said the Professor.
I confirm permission for the Kidney Cancer Support Network to use this story and to edit it with my further approval for their website. However, I reserve all rights and ownership of this story, which I may incorporate into a book or further story at a later date.
[/sayit]
