This is Chrissy's Carcinoid Diary

Your first question will probably be: "What on Earth is Carcinoid"? Not surprising, as this is quite often the response that people with carcinoid cancer get - even from their doctors!!

Carcinoid cancer is a relatively rare form of cancer which is slow-growing compared to other cancers. As yet, there is no known cure - perhaps as a result of its rarity, very little research has been done into finding a cure. Most carcinoid tumours are found in or near the appendix, but they can also occur in other parts of the digestive tract and in the lungs. Diagnosis often occurs by accident - perhaps a tumour is found during an appendectomy operation.

Most carcinoid patients will display symptoms of the Carcinoid Syndrome - flushing, violent diarrhoea, etc. The syndrome can often be misdiagnosed as IBS (Irritable Bowel Syndrome). The symptoms are usually brought on by stress.

This is my attempt to describe my life with carcinoid. Unfortunately in my case, the disease was already well advanced when it was diagnosed. Read and learn from my experiences and, please, if you ever show any changes in your bowel habits, do not be too afraid or embarassed to seek medical advice - your life could depend upon it! If you are diagnosed with cancer of any sort, do try to stay positive - it definitely helps!!

September 1996

Chrissy was in the process of returning to her job as a primary school teacher when she was struck by a strange illness. On the first day of term (staff training), she had a temperature, abdominal pain and headaches. She thought that she might have appendicitis, or maybe, a urine infection. Anyway, she struggled through the day, got home and lay down for the rest of the evening. Later that night, the drama began. . .

Robert was not happy about how things were going, so decided to ring the emergency doctor. We were asked to get to the surgery as quickly as possible, so that the doctor could have a good look at Chrissy and decide what to do about her symptoms. We had not met Dr. Malik before, but he was to play a major part in our future circumstances.

After a thorough examination, Dr. Malik decided that Chrissy should be admitted to the local general hospital for further tests, etc., as he was not happy about a large 'mass' that could be felt in her abdomen. Little did we know that Chrissy was to spend the next 4 weeks there, undergoing various tests, scans and treatments!

After all this, and after several consultations with specialists from different departments of the hospital, the bad news was finally broken to Chrissy. The message was bleak - the biopsy showed that Chrissy had a malignant tumour (presumed to be in or near the right kidney) and had a life-expectancy of between 6 and 12 months! She was sent home to have a rest from being in a hospital environment and referred to the Christie Hospital in Manchester.

October 1996

Not a lot went on this month, much to our frustration. Chrissy was given another biopsy and it was decided that she should start chemotherapy treatment - her tumour had been identified as a relatively rare type called a 'carcinoid'.

November 1996

Chrissy started a regime of 6 monthly chemo. treatments with fluorouracil (5FU) and streptotozin (not sure of the spelling of that one!). These treatments had the side-effect of making her extrememly nauseous, she spent more time being sick than anything else. However, there was a plus side - no hair loss! Hurray!

June 1997

The good news - The chemo. was over! The bad news - it had had little or no effect on the tumour!

It was decided to change Chrissy's treatment and she now has twice-daily injections of Sandostatin (octreotide). Initially these were given by the District Nurses, but we can now do them ourselves!

July/August 1998

Chrissy had another CT scan which showed that the tumour was 'flaring up' again - liver mets. and also extensive bony mets. it was decide to carry on with the injections and to fit Chrissy with a Hickman line to which a Baxter pump could be fitted. This would mean that Chrissy would be receiving a continuous dose of 5FU. No side-effects! But several restrictions - no contact sports or swimming - what a blow!!

October 1998

Another CT scan! This showed that, although the tumour was no smaller, it was no bigger either. The treatment is to be continued for another 6 months before having yet another CT scan!!

Feeling very well, apart from an irregular sleep pattern - that's of her own doing! Too much time spent on the computer!!

January 1999

Went for my regular visit on January 20th and ended up being shunted from one end of the hospital to the other! I've got a slight infection at the site where the central venous line enters my chest, so it was all systems go - they even suggested I might have to come in for a mega-dose of antibiotics and come off the chemo. for a week. Eventually, they decided to put me on a course of antibiotic tablets and to review the site in a week's time - that means an extra visit, but at least they're being careful!

February 1999

Still visiting the hospital every week. They put me on to a different antibiotic (Ciproxin) because the infection was actually caused by the e.coli bacteria! Took this for ten days with no problems, then they decided to carry on for another ten days - I ended up having an allergic reaction (probably to the Ciproxin, but it could have been something I ate!). I ended up looking like Mrs Blobby - fat, covered with pink spots and itching like mad. My own GP gave me antihistamines and advised us to get in touch with the hospital. Dr Wilkinson said to come off the Ciproxin straight away and that he'd see me in clinic on the 10th. By now, the evening of the 9th, the spots have faded, I'm not fat but I still itch everywhere! Ah well, tomorrow is another day . . . . .
I saw a Dr Danwata today (10th) and he informed me that the last 'swab' they took had come up clear - so I hadn't needed those extra antibiotics anyway (perhaps the rash was my body's way of telling us the same thing!). It's back to 'normal' clinic visits from now - which means I still visit them all again next week! He spotted that my mouth was rather sore, so I have a mouthwash to use up to 6 times a day (if needed). Apart from feeling tired, I'm fine again.
Well, it's the 17th and I've just got back from the hospital again. Everything OK - a brilliant blood-count, I'm pleased to say. Now we can go back to the normal pattern of visits - the Chemotherapy Suite in 2 weeks time for a 'pump-changing' session and then a visit to the doctors 2 weeks after that. Much better!

March 17th 1999

Well, it's been a horrible couple of days leading up to this visit. I've had back pain so bad that I haven't been able to sleep properly - the ordinary painkillers made very little difference. Mentioned this to the doctor we saw and she prescribed Voltarol - a slow release painkiller which slowly builds up to a level where the pain disappears (can't wait to try it!).
Robert was in an 'I want to ask questions' mode today. He wanted to know what size the mets in my liver were and were they suitable for chemoembolization? We got an answer to the first part of the question, but not the second. There are two growths in my liver - one measures about 12cm X 8cm and the other about 12cm X 7cm (pretty large, eh?). However, the doctor did say that they had both remained about that size for the past year. I've felt fairly 'down' after this news - I was glad that we had Deiniol's birthday and a trip to my parents' to take my mind off it all for a while.
March 23rd, 1999The Voltarol has worked wonders - no pain! I've also had a date for another CT scan (22nd April). Feeling very tired, just want to sleep all the time - even the thought of doing anything different makes me exhausted! I think I might be in need of a little counselling or something.

April 14th 1999

Just a quick visit today. No problems during the past few weeks, so we're just going to wait and see what the CT scan results are like next month. There seems to be some confusion as to how long Dr. Wilkinson wants me to stay on this current treatment regime - again, it's just a case of wait and see!
April 22nd 1999
Went for my CT scan today - I'm beginning to know more about the procedure than those who work there! Went on the 'new' machine - it was only bought two months ago, following a massive fund-raising over the past year. The CT equipment at the Christie Hospital is all funded through the Pat Seed Fund - I'll have to see if there are any sites about her on the Web, so far I haven't found any. Once the results are in at least the doctors can decide whether it's worth continuing with this treatment, or whether it needs adapting or changing in some way. I just hate all this waiting, though!

May 11th 1999

Several things happened today. First of all, I got my CT results. All the doctor said was that any signs of growth were insignificant - I took that to mean that there might have been some growth of the tumour but that it wasn't a lot!! Second, we asked about future treatment - they're going to keep me on the same treatment for the next month (basically because I don't show any of the carcinoid syndrome symptoms), but they want me to have another 5HIIA test done (24 hour urine sample). We showed them some details we'd found about the use of Alpha-Interferon for the treatment of carcinoids, but they did not think this worth considering because of the possible side-effects. The other thing we were told was that they are not looking for a 'cure' for me - basically, the treatment I'm receiving is palliative (treating the symptoms/slowing down the growth of the tumour). This was what my GP said quite a while ago - he is amazed at how well I'm doing and says I should bottle whatever I've got that keeps me going as I'd make a fortune selling it to cancer specialists!!! Thank Goodness I'm surrounded with such positive people as him!

June 9th 1999

Not a lot more to say this month - everything going on as usual. No results yet from the 5HIAA test, I'm to bring another sample in for next month. Just a rather frustrating day because everyone and everything at the hospital seemed to be on a 'go-slow'! Ah well, I suppose that's one thing than can only get better - it surely couldn't get any worse .....or could it???

July 7th 1999

What was that about things not getting any worse? Everything started off well - got the blood test done (still slightly anaemic, though not enough for them to think about giving me a transfusion). Saw the doctor - 5HIAA results were back and were excellent! (i.e. very little, if any, serotonin being secreted). Went to get new pumps fitted - NO PUMPS THERE AGAIN!!!! - usual story, "...come back in an hour and they'll be ready." This has been happening too many times now, so Robert has decided that we have to lodge a complaint! Something has to be done about all this extra stress we're put under at virtually every visit. As the person we spoke to from the Admin. Dept. said "The hospital shouldn't be ruling your life like this. It's enough coping with the fact that you have cancer - you don't need to be worrying about whether your next visit is going to take 1, 2, 3 or even 4 hours!"

August 4th 1999

Started off as a fairly routine visit. I told Dr. Finn that I had had several nose-bleeds during the past week, also that I was in pain (between my shoulder blades). She prescribed Co-Codamol for the pain and said that if the pain was still around next week, I should return for X-Rays. We then had to wait for my blood results to show up on the computer - it took ages, so I was sent to the Chemotherapy Suite to have my next "pump" fitted. When I returned to Clinic, I was told that my haemoglobin (Sp?) count was only 8.5 so I was pretty anaemic again. This meant that I had to return to the hospital on Friday for blood transfusions.

August 6th 1999
Returned to the hospital and was admitted to the "private" wing as all the other beds were taken. WOW - how the other half live! Single bedroom with own TV (and satellite channels), own telephone, refrigerator, electric fan and meals served by waitresses in black frocks and white aprons!!!!
Received 3 units of blood and am feeling so much better! Apparently, there were a lot of patients nedding transfusions this week - the doctors were putting it down to the heatwave combined with fatigue brought on by chemotherapy.

September 1st 1999

A routine visit with very few problems, apart from the usual time-consuming ones!

September 29th 1999

Had to have the Hickman Line site looked at by one of the specialist IV Nurses because it is looking decidedly inflamed and "wobbly". It was given a good clean which resulted in the cuff (which should be at least an inch away from the surface of my skin) being almost fully exposed. They decided to apply 2 Tegaderm dressings for added security and they want the District Nurse to visit me at home every week (at least once, but probably more!).

October 4th 1999

The District Nurse visited this morning and was not happy with what she saw. The Line site is very infected and she advised us to go to the Christie Hospital as soon as possible for their advice. I was seen very quickly - the site was cleaned and a swab was taken for analysis. I was also put on a course of Erithromycin antibiotics to start clearing up the infection. They changed the dressing for a breathable one called IV3000.

October 13th 1999

The infection seems to have cleared up completely!!! I was given 3 pumps this visit as I am going away on a much needed holiday in 2 weeks time and that means missing one appointment at the hospital. Hopefully, everything will stay on an even keel from now until my next visit in November.

November 12th

Well, the infection hadn't cleared up! Since the last entry, I have been on two further courses of antibiotics (Flucloxacillin) but nothing seemed to get to the heart of the infection. Hence, on the 12th of November, I was admitted on to the Day Ward at the Christie Hospital to have the central line removed. I saw Dr Wilkinson himself - he is arranging for me to have another CT scan done in the near future and I will start attending the Clinic again after the results are through. In the mean time, I am off the chemotherapy, so I am getting ready to have a restful Christmas!

This site will be updated with all the medical events of the Year 2000 soon. A quick note - I'm still going strong and only experiencing slight Syndrome symptoms. Our biggest worry is the size of the liver tumours and the discomfort they are causing. More soon!!

November, 2000 - On my last visit to the Christie, we really decided to be more assertive in looking for a way to ease some of my symptoms. Although both the liver and kidney function tests had come back normal, I am looking decidedly "pregnant". Everything came to a head when Deiniol asked me "Is there a baby growing in your tummy, Mummy?". The psychological effects of this have been quite devastating in that I am very conscious of what I look like to other people and am beginning to feel that I should stay out of public places! Anyway, I ended up with a referral to a counsellor (still waiting for an appointment), a liver specialist (to see if an embolisation could be done) and the CT scanning department (appointment in January).

I have now added a second page to my diary outlining what happened next!!

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