patients Stories

David's Story

In January 2014 David developed an ache in the left groin/hip area which he presumed was a returning inguinal hernia problem for which he had had successful surgery in 2010. He had been fully fit since then but had experienced a couple of unexplained skin rashes which disappeared after using fungal cream. His doctor told him to try to lose a bit of weight as this would stand him in good stead for any forthcoming surgery. Now to get this in perspective – we had both put on a bit of middle-aged spread but were certainly not overweight by any means (David was 90kgs and 1.83m).

A couple of months later, having lost several pounds, the ache wasn’t getting better so David returned to the GP to request that he should be put on the list for surgery as the pain wasn’t getting any better. He had also got a couple of painful areas in his spine but saw a chiropractor regularly and the pain wasn’t particularly unusual.

We went on holiday to Greece in June 2014 and David’s hip was aching more. Whilst in Greece he was bitten by an insect in the same groin area which was difficult to heal and left a circular mark on his skin. He had also been scratched by a cat.

Upon our return from holiday David was in quite a lot of pain so returned to the GP and asked for his appointment for surgery to be escalated. At this stage he was taking the maximum dose of paracetamol per day, which was just about holding the pain. However, a couple of weeks later he was in more pain and was told to take ibuprofen as an anti-inflammatory as well. The pain was severe and on several occasions he found himself just sitting in a hot bath in order to try to ease it.

After a couple of weeks I woke up one morning and just said “something isn’t right here. I want you to see the doctor today and I’m coming with you!” We didn’t see our normal doctor but a young female doctor who examined David and saw that he was in pain whilst she rotated his leg/hip. At this stage she thought it was probably a worn-out hip joint so sent him for an ordinary x-ray at the local hospital. I asked for blood tests to be done and mentioned that he seemed to be hot during the night (which was unusual). He was first prescribed codeine (not effective as David is one of those who can’t synthesise the drug), then ibuprofen which proved to be ineffective too. Next was a stronger anti-inflammatory, Naproxen. The ordinary x-ray showed a bit of wear and tear of the joints but nothing disastrous. However, the blood tests showed certain markers were high. David was then sent to our local Orthopaedic Hospital in Crowborough to see a very nice surgeon, Mr Hugh Apthorp, who examined David and then requested an MRI. The MRI showed a white patch on the acetabulum which looked suspicious so Mr Apthorp requested a further bone scan and CT scan. Nothing great from the bone scan but the CT scan showed lesions in the spine and the spleen. There were also a few nodules in the lungs. Mr Apthorp then sent David to the Royal Orthopaedic Hospital in Stanmore, Middx for a bone biopsy to confirm what the problem was. It was then, in October 2014 that David was diagnosed with EHE, malignant vascular tumour of the bone. Due to its location, and other appearances elsewhere, it was decided by the powers that be that surgery wasn’t the best option (although we kind of wish it had been) so David was sent to UCLH under the care of Professor Jeremy Whelan.

Our first meeting with Professor Whelan was on 31 October and we were first seen by his Registrar who then told us that as the disease was in David’s lungs prognosis wasn’t good. We then met Prof Whelan who confirmed the diagnosis of EHE/Angiosarcoma but wasn’t so concerned about the lung appearances. He told us that there was no cure but he did have treatments. He told us that drug companies weren’t interested in sarcoma as it only affected a few people so there wasn’t any money in trying to find a cure, unlike breast/prostate etc. He didn’t plan to do anything immediately as he wanted to gather data. We had thought that we had caught this disease early and were pretty knocked back by the prognosis. It all depended on how aggressive the disease was. David wasn’t happy about nothing happening and after a month the professor organised tests ready for when he decided chemotherapy was necessary. Neither of us fully appreciated at that time how chemotherapy would take over our lives. Prof Whelan could see a seemingly well person in front of him – “why would I make you ill?” Two key areas of pain were David’s hip and areas of his spine so Prof Whelan organised for him to have palliative radiotherapy in different doses to these areas and by Christmas David was pain-free. However by our January appointment David had developed pain below his ribs and was given a further single shot of radiotherapy which didn’t have much effect.

The problem area for David is adequate pain relief. He takes a slow-release anti-inflammatory (Diclofenac) and his best pain relief comes from good old paracetamol. However, as he can only take 4 grams per day there are times when he is without effective pain control. He takes Omeprazole to prevent problems with continuous use of anti-inflammatories. The hospital added Oromorph to the mix but this hasn’t proved effective and caused horrendous constipation – yet more prescribed pills to cure that!! David was then offered complementary therapy. Our local hospice has provided wonderful reflexology for both David and me. This has helped David a lot in many ways. He was also sent to the Integrated Hospital (part of UCLH) and saw a homoeopath who prescribed several individual remedies including mistletoe and suggested acupuncture for pain relief. To that end David has had fantastic support at both the hospice and Integrated Hospital and we would both recommend these complementary disciplines wholeheartedly.

The disease has now appeared more rampant in David’s liver and Professor Whelan has decided that “now” is the time for some chemotherapy. Since there is “no cure”, or as I say “no KNOWN cure YET” we are left wondering what chemotherapy holds – watch this space!

Its is now February 2016 as I write this final piece in David’s story.  Chemotherapy did not turn out to be a good decision, but having weighed up all the options it was something David felt he had to undertake.  “Are you going to die without having tried chemotherapy?” Prof Whelan said.  Put like that it is a difficult decision to make.  However, actually we were glad that David had not been given chemotherapy much earlier.  It is NOT a cure.

David had a bad reaction to Doxorubicin which left him in Intensive Care for 5 days.  Although he recovered and was able to leave hospital he was very weak.  The look of shock and horror from the professor and specialist nurse when we travelled to London said it all.  He was a different man.  David had multiple blood transfusions and endured several episodes of uncontrollable bleeding but mercifully died peacefully and comfortably in our local hospital in October 2015.

Hindsight is a wonderful thing.  Faced with that decision again with current treatments my answer would always be “no” to chemotherapy, having seen what it did to David.  I hope for all the other patients who have EHE that Professor Rubin will find an effective treatment, if not a cure, very soon.  His dedicated research is vital and needs all the support it can get. Meanwhile, JUST LIVE ….!