Patient Stories – Christine
Christine Barlow
My Journey with NET’s began back in July 1997; I was 29 weeks pregnant at the time. My problems started with tooth and jaw ache eventually making it nearly impossible to open my mouth. I became very disoriented, my GP came out to check on me, she asked if I had been drinking as she described me as having drunk 2 bottles of whiskey!, at this point it was decided I needed to be admitted to the maternity ward of my local hospital. After some tests had been carried out it was established that I had pre-eclampsia and being so early term wise I needed to be somewhere that they had neonatal bed for if the baby was delivered early.
In the early hours of Saturday 26 July 1997 I was transferred by ambulance to Aberdeen Royal Infirmary, shortly after arrival my daughter was delivered by emergency caesarean section, weighing 3lb 2oz she was placed in an incubator in the neonatal unit and I was placed in intensive care.
Bloods were taken and it was revealed that I had dangerously high calcium levels of 5.87 mmol/l (normal range2.2-2.26), I was given lots of fluid and Pamidronate to reduce my calcium, the treatment worked as it brought it down to below the normal range. After 2 days I was put on the ward and stayed in hospital for about 3 weeks, Amie my daughter, was still in hospital when I was discharged and came home at the end of September.
This was just the beginning of the tests and screening to find out why this had happened and after about 18 months of still having elevated calcium a CT scan was carried out and finally revealing a 9 centimetre tumour in the tail of my Pancreas. In October 1998 I had an Octreotide scan and biopsy done diagnosing my tumour to be a Nero Endocrine Tumour.
The tumour was removed in November 1998 but unfortunately my Spleen had to be sacrificed in the process due to the way the tumour had grown around the blood vessels. There was no sign of spread which was a huge relief. My case was being discussed with a doctor in Liverpool, who concluded that my tumour was producing PTHrP(Para Thyroid Hormone replacement Peptide), this is a hormone similar to but not identical to Parathormone. This controls the levels of certain hormones in your body.
All seemed well after that and my calcium levels stayed in the normal range, we were using them as a sign of recurrence of tumour. I had my 5 year check up and my calcium levels were raised again, a subsequent CT scan revealed multiple tumours had returned in my Liver. By now 2003 and I was living in the Nottingham area, I was admitted to Nottingham City Hospital for fluid treatment to bring my calcium levels down, this did the trick. But they continued to go up and down and another admittance to hospital was needed this time Pamidronate was used to lower the levels.
For the next 2 years I spent many a time in hospital, by now my care had been transferred to Nottingham Queens Medical Centre liver team who maintained my levels with fluid and Pamidronate.
In 2004 I had transarterial embolization of the right lobe of my liver, but post discharge I suffered with stomach pain and fever and was admitted to my local hospital where I was treated for sepsis. A few days a later I was admitted to Lincoln hospital with heart flutter which was corrected with drug therapy. A CT scan showed that there was no further tumour growth or spread.
In January 2005 I was again admitted to hospital with elevated calcium of 3.36mmol/l, this was treated as an emergency and again had fluid treatment. By now I was also on sub-cutaneous Octreotide injections and was being changed to deep sub cut Lanreotide injections.
At this point it was decided to ask what the long term prognosis was and to my horror I was told that it was not good and would probably only have between 3-5 years to live. My daughter was now 8 and I was just separated and getting divorced, so all in all it was not the best day of my life.
A second opinion was required and through the help of Cancer Research and my friend we found Dr Martyn Caplin and his team at the Royal Free Hospital. I first saw Dr Caplin in February 2005 and he recommended a whole range of blood tests and scans, which he believed would show the extent of my disease and what treatments was the best for me. This was not going to be easy as my hospital in Nottingham where not keen to carry out these saying that the disease was the same as it had been 8 years earlier and therefore they knew how to treat me! We had to contact my local MP to get them to carry out the tests which they did very quickly, the MP said as I was only 33 and I deserved the very best chance to get better.
The tests did get completed and showed that my PTHrP levels were once again high proving that the tumours in my Liver where indeed doing the same as the one in my pancreas had done. Fortunately my bones showed no signs of weakening, but the biggest surprise was that the tumours did not take up the Octreotide in the CT scan so it was repeated at The Royal Free and confirmed they were not Octreotide receptive. I had a FDG PET scan and this was positive.
Whilst all these test were being carried out it was being discussed as to what was going to be the best long term treatment. Which concluded in a liver transplant, again I was shocked at this as I believed that it must be far worse than I thought or I would never need anything as dramatic as a transplant. I won’t lie it was a very emotional and stressful time to make that decision to go forward onto the list. The operation itself was a major thing and had its own risks. Many more scans were carried out to prove the tumours were confined just to my liver, but after each scan something new would show up to prevent me going on the list, it would either be a lymph node in my armpit or something in my ovary. So every time I thought the decision would be made it was put back another month while the scan was redone and checked to make sure it was not the cancer spreading. Oh how I wished that just for once in my life my body would behave normally. In between all of this I had started having meetings with the liver transplant team and had a week’s work up to see if I was fit enough to go on the list if we ever got to that stage.
All the while I was getting weaker and weaker as my body was fighting so hard against the cancer and the hormone in balance. It was with great relief and excitement when it was decided on 28 November 2005 that I could go onto the transplant list. I was told that at that current time people with my build and blood group were waiting about six months!!
One of the silly things that comes into your head is that how will you handle every time your mobile rings is this going to be the call, so because I did not want to have to deal with that it was decided that the call would go to Jayne.
It only really hit me how ill I was at New Year 2006, we had decided to go out in London for the night, we went and had a meal and on the way back to the hotel I fell asleep in the car and was being called boring and miserable. It wasn’t until New Years day when I got up that I realised that I was very poorly, my speech was slurred and I couldn’t get my words right. My jaw was also hurting which I knew was a very bad sign from the previous tumour, so as we were in London we called Hassel ward at the Royal Free, they told me I would have to come down to A&E but they would let the duty liver doctor know I was coming in. When I arrived they took blood and when the results came back my calcium was dangerously high at 4.6mmol/l, so I was admitted to the ward and spent the first week of 2006 in hospital.
I suppose this was my wakeup call as to how ill I had got, it is a very difficult thing to deal with and without realising you can be snappy, angry and nasty to the people who are closest to you, I was not a very nice person to live with never sure what you would find when you got home whether it was a good day or bad day, the bad days got worse and therefore I got more angry and worried as to what was going to happen. It was hard as well as we never actually talked a lot about it because no one wanted to broach the subject as it was upsetting for them and me so we all just walked around on eggshells all the time. It is times like this where you ask why me but there is not an answer to that and the only way forward is to be positive.
After my stay in hospital at New Year my stays in hospital became more frequent in February 2006 I had some Trans arterial chemo embolization to try and control the production of the hormone and make the control of my calcium easier. At this point I was still receiving 3 weekly 120mg Lanreotide injections.
By the end of March it was decided that if I kept having high levels of calcium, I would need to have some more embolization. But fortunately before we got to that stage I got the most wished for call you could want at 1am Sunday 16 April 2006(Easter Sunday) to say that they had a match and I was to make my way down to the Royal Free. It had been agreed that if the call came at night Jayne’s daughter would come and stay with Amie until the morning, so Jayne headed off to collect Niki, at this point I was supposed to have a shower but all I could think about was getting dressed and ready to go, which I did. It wasn’t until Jayne reminded me that I had to shower that I remembered, so I had to undress and get in the shower, sometimes you just go onto auto pilot and don’t know what you’re doing.
We left home and headed off arriving at the hospital about 4 am, they then carry out some blood test and a few other bits to check if you are healthy enough to have the operation that day. That is when the wait really started it was about 9am when we got told that the donor liver was good and the transplant would go ahead. At this point I told my family what was happening and waited to be taken down to theatre at about 11am. The operation took 9 hours obviously I was totally unaware how long it took and it must have felt like a life time for my family and friends. After the operation I was in intensive care for 2 days then went back onto the ward.
After 5 days it is off to have a trans arterial biopsy of the liver to check for signs of rejection and have your main line taken out, but typically with me I had held a lot of fluid and was unable to get a line in anywhere else so they had to put it back in jugular vein in my neck.
At the week end Amie came down to visit and asked why my eyes where a funny colour. So they had a look at me and on Monday I needed to have an ERCP and Palliotomy. I had also contracted MRSA and a blood clot in my Jugular vein so on the up side I got my own room and the down side some strong antibiotics and Warfarin treatment. Unbelievably post transplant my calcium levels dropped and I had to have calcium supplements, they are nice big chewy tablets, (I still take them today!).
Apart from a few minor problems I made a very good recovery and at about ten days they said I could go home if I wanted to for the weekend, but I was too frightened and wouldn’t go. It sounds silly to say you are frightened to go home but what I mean is that you become totally reliant on everyone around you so to be let out on your own is daunting, especially as I had only just managed to get myself to and from the shower a few days ago. It was worse knowing that I live so far away (about 2 Hours) and still having my staples in I didn’t want to risk any problems. But I did start to go out for a coffee and even something to eat at this point so as to show me that I was well enough to get about and away from the hospital. Because I had recovered so well the transplant coordinators got me working they had me sticking labels on their blood test request forms I suppose it gave me something to think about and do. They also do a quiz with you to make sure you can recognise and get your correct dosage of your medications before you leave.
At 3 weeks post transplant it really was time for me to head for home and get on with it, so I did and have never looked back since.
So here we are 3 years on I am doing well but with a few side effects from some of the tablets, such as tremor from Tacrolimus and having become diabetic. The tremor is now under control with another tablet and tweaking the dose of 2 anti rejection tablets. I am still kept a very close eye on with scans every 3 to 4 months and trips down to Trans plant Clinic and of course Neuroendocrine tumour clinic. But i would have all the scans tests and clinic appointments they could throw at me if it meant that I was kept well and cancer free.
I have been left taking 13 different tablets a day and 1 injection but it is all worth it to be alive I am clear of cancer and disease at the moment so the future is looking good. I wouldn’t say it has been an easy journey for me or my family but we got there in the end. My family, friends Doctors and nurses have all been a great support to me throughout this time and I appreciate what they all did for me more than words can say.
So being so well at the moment I am running a half marathon in August for the NET Patient foundation and The Liver Transplant team, I will keep you posted as to how I get on!!!
There is hope out there for everyone even when life seems at its worst so just keep fighting and enjoy every day.
