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Matts Story

December 2004 Matt’s cancer story began shortly before Christmas 2004 when the abdominal discomfort, backpain, fatigue and decreased appetite that he’d experienced for a short while became bad enough to warrant a visit to the doctor. 
He failed to notice that he was losing weight at a serious rate. He’d started a diet and was pleased that it was having an effect.
Jan – Feb 2005 The abdominal discomfort became more and more persistent and he made a further three trips to the doctors before finally being referred on to a gastroenterologist.
March 2005 As part of the preparation for seeing the gastroenterologist Matt was sent for a CT scan at Reading Hospital on 16th March 2005. The CT scan revealed the worst!
Extensive swollen lymph glands together with an enlarged spleen and a lesion in the liver were apparently highly suggestive of lymphoma – probably non Hodgkins.  Matt had also started to become increasingly hoarse around this time and lymph nodes in his neck began to become more prominent.

He was referred on for private care under Dr. Chris Hatton, a consultant haematologist and specialist in the treatment of lymphomas, at the John Radcliffe Hospital in Oxford. The private care came as one of the benefits given by his employer.

Biopsies were scheduled but there was an unfortunate delay as the samples from the first biopsy all turned out to be of dead tissue. A second biopsy was quickly scheduled.
Treatment for lymphoma was timed to start as soon as the results were back.
Part of the treatment – Prednisolone – was in fact started a few days before the results were due back, to get things moving along.

Unfortunately when the results of the second biopsy came back they did not confirm that he had lymphoma but instead gave an indication of an extra-renal rhabdoid tumour or a high grade epithelial sarcoma.

Matt misheard the word rhabdoid and substituted the word rhomboid – something he was a bit more familiar with. There was a brief but frantic search around the internet for ‘rhomboid cancer cells’ that didn’t turn up very much!

April 2005 Matt was discharged from the John Radcliffe with an urgent referral to Dr. Jeremy Whelan, an oncologist who specialises in sarcomas and rare cancers. An appointment was scheduled to occur within a few days and Matt was admitted to the Middlesex Hospital in London on the 25th where further tests were carried out e.g. bone scan.
Further opinions regarding the type of cancer were sought from a renowned pathologist.  

29th – Matt had the weekend out of hospital and enjoyed a trip to Longleat on the Sunday. However by the Monday, a bank holiday, the morphine he had been taking was no longer enough to control the pain and he returned early to the Middlesex where thankfully they didn’t believe in sparing the pain killers.

May 2005 3rd – Chemotherapy – round 1 – Doxorubicin only.
We were rather disappointed to find this was the single drug Doxorubicin, albeit in a high dose. Our understanding was that chemotherapy drugs are often given in combination with one drug catching the cancer cells that the others miss. All the success stories with chemotherapy seem to involve multiple drug regimes. There seemed to be a hint of palliative care with a single drug that we weren’t prepared to consider at that time. 

When asked about this later, the consultant said that Doxorubicin had been prescribed to “see if it would work”. The answer still seems a bit inadequate.

Within a few days the Doxorubicin started to take effect. The pain subsided and the lymph nodes on his neck began to reduce a little. However the effect was short lived and began to reverse again after a few more days.

12th – Matt attended for a PET scan.

27th – Chemotherapy – round 2. This time the Doxorubicin was supplemented with Ifosfamide. This was an improvement from our limited understanding though still short of the ‘Full Monty’.

June 2005 Again after a few days a noticeable improvement only this time the improvement continued for many more days and Matt began to lose his hoarseness and to get his voice back. Optimism started to grow along with the worry that the number of treatments with Doxorubicin is limited because of serious side effects that occur over prolonged usage.  17th – Chemotherapy – round 3 – again with the Doxorubicin/Ifosfamide combination.

Again more improvements followed with Matt fully regaining his voice and finding the pain so reduced that he rarely needed the morphine tablets. The tumour on his neck was shrinking noticeably and became a measure for us in
determining success.

July 2005 8th – Chemotherapy – round 4 – Doxorubicin/Ifosfamide.  28th – Hick’s line fitted. Kidney function checked ready for next round of chemo.

29th – Another CT scan to get a better view of how successful treatment had been ready for a review scheduled a couple of weeks later.

August 2005 1st – Chemotherapy – round 5. Doxorubicin/Ifosfamide. Delayed by 3 days because his oncologist was on leave and the consultant taking his place ran out of time.  13th – Weekend away in the Peak District with Steve and Jan taking in the delights of Dove Dale, Buxton and Castleton (in between the showers).

15th – Review meeting with the oncologist who now added Etoposide to the chemotherapy mix.

22nd – Chemotherapy – round 6. Now with Doxorubicin, Ifosfamide AND Etoposide.

Matt continued to improve apart from needing occasionally to spend some time isolated in hospital because of concerns about neutropenia with white cell countsbecoming almost undetectable a few days after the chemo.

Matt’s voice appeared to have returned for good. The swellings on his neck had almost, but frustratingly not completely, gone. Pain killers were not needed.

September 2005 12th – Chemotherapy – round 7 – Doxorubicin/Ifosfamide/Etoposide.  Swelling on neck no longer visible but frustratingly could still be felt by Matt.
Worries about running out of time before Doxorubicin has to finish.

30th – another CT scan to check on progress.

October 2005 3rd – Chemotherapy – round 8. Doxorubicin/Ifosfamide/Etoposide.
Apparently we had now run out of our allowance of Doxorubicin – the maximum lifetime dose had been reached or even exceeded. What next?  7th – Matt started on Etoposide tablets.

31st – Another biopsy. Taken from those aggravating swellings on his neck.

November 2005 Over the next few weeks the swelling on his neck returned to the point where there were worries that it might interfere with his breathing.
Radiotherapy was scheduled.  22nd to 25th – Matt went into the UCLH hospital in London (cancer services had moved over from the Middlesex) for radiotherapy on his neck.

26th to 28th – Matt’s started to swell as his kidneys stop working properly.
Kidney drains and catheters drain very little of the excess fluid.

29th – Matt was having trouble breathing because of the fluid retention.
A doctor specialising in palliative care kindly made herself available without being obtrusive – we really didn’t want to think about what was happening.
At the moment that Matt was clearly troubled with his breathing, the doctor was there giving him further medicine to help ease his discomfort. At 15:50 Matt took his last breath.

2 Comments »

  • faye leneghan said:

    have just found your website and was looking through it. My daughter died from a malignant rhabdoid tumour in her neck and i was amazed to find this site as i haven’t found anyone with the same problem let alone in the uk.

  • PeteH (author) said:

    Hi Faye,
    Thanks for the comment. As far as I can gather although its pretty rare, a number of different cancers can develop this added aggressive component. It’s not to be confused with the rhabdoid tumours of children.
    The treatment suggested is simply that for the original underlying tumour type. This wasn’t found in Matt’s case.

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