Eric’s Carcinoid Cancer Story- An Australian Perspective

For access to Eric’s original story and pages click here

Eric has been diagnosed and treated for a rare form of cancer- Carcinoid Cancer. The saga
below chronicles his journey from the dayin 2004 when his enlarged liver was identified
at ultrasound when investigating for a possible gall stone. It turned out to be
one heck of a gall stone!

We are so pleased to be living in Western Australia where universal medical
coverage is provided ‘free” to all.

If you want to send a message to Eric you can send an
email to this email address

2004 Surgery
photos uploaded to website. Click here unless you
are squeamish!

Latest Update: 6 June 2007

We have just returned from Fremantle and Eric’s visit to the Nuclear Medicine Department and seeing Dr Harvey Turner.

Eric has been offered a place in Dr Turner’s CLEMENT Study. CLEMENT stands for Capecitabine-radiosensitizing Lutetium-177 -octreotate Endoradiotherapy Management of Endocrine Neurogenic Tumours. This study is a result of collaboration with the esteemed nuclear physicians at Erasmus Medical Centre in Rotterdam and is physician sponsored. This means that no drug company is involved in the study.

This is a pilot study where Lutetium-177 (Lu-177) tagged Octreotate is combined with a radiosensitizing chemotherapy agent (capecitabine) to enhance the effectiveness of the Lu-177.

Professor Krenning and Dr Kwekkeboom in Rotterdam have recently reported and published their findings from a study of Lu-177 octreotate only therapy delivered to 131 patients in the Journal of Clinical Oncology -Volume 23, Number 12, April 20 2005. Nearly half of their patients responded favourably to the therapy. This is extremely good news!

We are hoping that the combined therapy will prove to more effective than the Lu-177 octreotate therapy only. This is one of the goals of the study.

Eric had an octrescan today to ascertain that his tumours have a good uptake/afinity for the octreotate- which they certainly do. Along with other factors this makes Eric a good candidate for the study.

The regime that Eric will undergo is 4 rounds of therapy 6 to 11 weeks apart- depending on the repsonse and ability of the kidneys and platelet counts etc to recover from the therapy.

Eric will undergo treatment along with three other candidates. The treatments will be timed in such a way that they can be given to the four candidates at the one time. This helps to limit costs and is more efficient for the study. Of course all treatments are provided to Eric free of charge.. medical expenses are covered for all Australian residents who choose to be treated as public patients.

Treatment Regime

Monday

After baseline imaging and bloodwork Eric will meet with the study’s oncologist Dr Philip Claringbold for assessment and prescription of the Capecitabine.

Wednesday

Admission on a day basis to Fremantle Hospital where the therapy will be administered followed by 4 hours of intravenous administration of standard amino acid solution to help protect the kidneys from the effects of the treatment.

After further imaging Eric will be allowed to go home (well at least to our friends home in Perth).

Thursday, Friday and the following Monday

Serial Gamma imaging at Fremantle Hospital to help define the uptake of the Lu-177.

Eric will then be able to return to Busselton until the next round.

Side effects are expected to be limited to a little nausea for 24 hours or so which apparently can be easily controlled with various drugs and there is also a possibility of some hair thining around week 3 in each cycle.

This process will be continued for another three rounds after which further imaging and final results will be collated.
We are both looking forward to the study and consequent treatment. We have a tentaive start date of Monday 16 July with the first treatment on Wednesday 18 July. We will confirm this as information comes to hand.

We were very please to meet with Dr Turner who is extremely helpful and was very keen to make sure Eric and Leonie understood the study, treatments and all the possibilities. He took a lot of his valuable time to ensure we felt at ease with the process and we were very appreciative of his time and the effort he took to inform us.

16 May 2007

The latest and most exciting news is that Eric has been accepted onto Dr Harvey Turner’s Lu-177 study/treatment group at Fremantle Hospital. This means that the planned Trans Arterial Chemoembolisaton of the liver tumours has now been put on hold while Eric is readied for entering this program.

We have been waiting to get into the Lu-177 study since Eric was discharged from hospital in July 2004! At the time Eric was considered unsuitable as he had no visible liver tumours or active symptoms. Nearly three years later he now qualifies! With numerous visible tumours throughout the liver and definite carcioid symptoms despite being on Sandostatin 40 LAR every 4 weeks (recently up from 30) Dr Turner has contacted our GP (General Practitioner) for background information and to offer him a place on the study. We are so pleased as this is considered an excellent treatment option.Click here for a summary of the Rotterdam Lu-177 results .

The Lutetium-177 treatment involves infusing Eric with sandostatin tagged with the radioisotope Lutetium- 177(Lu-177). As Sandostatin is attracted to the tumours with Sandostatin receptors (which thankfully Eric’s tumours have) it is used as a delivery system for the Lu-177. It’s a bit like giving a personalised dose of radiation sickness directly to the tumours! For more info on the Lu-177 treatments as they are available in Rotterdam and apparently very similar to the protocol used in Western Australia – click here

From our very early understandings Eric will undergo 4 cycles of treatment 6 to 9 weeks apart. The interval is determined by how well Eric copes with the side effects and how his body and kidneys, in particular recover. One of the not so fun things is that Eric will officially be radioactive (read “glow in the dark” variety) and for a period of time after each treatment will have to limit contact with others. For example we will not be able to sleep in the same bed – in fact we can’t even sleep within 2 metres of each other – even if a wall separates us…so its opposite ends of the house for us! Hopefully the period won’t be too long as we both intensley dislike being apart.

This treatment regime is very similar in overall effect to normal chemotherapy regimes we have all come to know and expect. This is one thing Eric and I are not personally looking forward to we must admit. Side effects can include nausea, fatigue and Eric’s most unfavourable effect, hair loss, although he has already declared that he refuses to wear a beanie! This I feel is very unpatriotic…for such an avid West Coast Eagles fan- for the uninitiated this is one of the two Western Australian Australian Footbal League teams – Leonie barracks for the Fremantle Dockers…yes we are a divided family.

So for now we are waiting to hear directly from Dr Turner…once we do we will post on the site and and all relevant information. We suspect there will be extensive pre-study testing octreoscans and imaging, then the first treatment. Until then…we continue to live, love and laugh… as we all should.

20 March 2007

We have just arrived home from Eric’s latest appointment with his doctor Mr Harsha Chandraratna. Eric underwent and MRI of his abdomen 2 weeks ago as art of his 6 monthly check up. Unfortunately the carcinoid tumours are on the march again despite being on sandostation therapy.

From the report:

There are multiple recurrent metasteses demonstrated, the majority of which are relatively hypervascular. Thelargest is adjacent to the resection margin and has increased in size since the prior CT scan (July 2006), now measuring 4.2 cm maximum in diameter. At least four other lesions are domonstrated involving the remaining segment 4 and 2 withseveral smaller lesions likely to be present also, seen in small areas of increased vasularity. The other larger lesions measure in segment 4b, 17mm in diameter and in segment 2 14mm in diameter as well as some sub-centimetre lesions.

There is a prominent porta caval node measuring 20mm diameter but this is unchanged over thelast two CT’s.

As there are now multiple tumours which are growing in size and number it has been decided that Eric should undergo Trans Arterial Chemoembolisation to help shrink if not kill off the vasuclar tumours. We are hoping that Eric can have this procedure in the next two weeks.

We were not surprised by the MRI results as Eric has been gradually experiencing more carcinoid symptoms over the last few months. As his sandostatin shots are coming due the diahorea and tiredness has been increasing and resolve when he gets his sandostatin shot. And of course if he overdoes the stress thing or drinks a little too much wine then the symptoms hit back with a vengeance!

Eric recently had two 5HIAA urine tests to see where his serotonin levels were – just after his sandostatin injection it was 42 (upper normal limit is 50) and at the end of his cycle just before his next shot it was 62. So this shows that there are active cancerous tumours in the liver producing hormones and the syndrome.

Eric will also be upping his Sandostatin levels to 40 units per month (from 30) in the hope of keeping is serotonin in the normal range. As we know Serotonin running around in the blood stream can be very damaging to the heart valves and can ultimatley lead to heart failure.. not something we are subsrcibing to!

So all in all not great news..but also not entirely unsuspected. We have always known that this was an insidious disease and being cancer not something to be underestimated. We are just so pleased that we can continue to enjoy our lives and not have to dwell on Eric’s cancer..we look upon this as something that has to be dealt with and then we can get on with living life to the fullest…as it should be lived! We will keep you all updated as and when things happen…

20 July 2006

Eric has now been on 20LAR (20 units of long acting Sandostatin) for 3 months to help with the Carcinoid Syndrome symptoms. He is tolerating the regime well but still has some breakthrough symptoms so the doctors have upped the dose to 30 LAR every 4 weeks.

Eric visited his surgeon Dr Harsha Chandraratna this week to get the results of his latest imaging studies. His CT scan showed that their appears to be no increase in the 2.8 cm tumour in his liver since the last scan in January. This is good news!

We know that there must be some functioning tumours in his liver as he does experience syndrome whenever his Sandostatin is low .. we just hope that the tumours remain as they are or hopefully reduce over time…we shall see!

24 May 2006

Well Sandsostatin seems to be helping with Eric’s symptoms. When Eric was only
on the 3 injections of short acting Sandostatin per day (besides getting mighty
tired of the injections and the occasional bruising) he was still getting bouts
of diarhrea, some flushing and at times generally feeling unwell. Admittedly we
were a little disappointed in that we had hoped that all the carcinoid symptoms
would be banished.

After 4 weeks of self administered 3 x daily injections
Eric had his first long acting (20 LAR) sandostatin injection (intra
glutineal…ouch) last week. The self injecting regime is to continue for
another two weeks to provide full coverage of the sandostatin.

Eric is
finally seeing some abatement from the symptoms although he remains tired and
not quite himself. Hopefully as the treatment progresses this will improve.

I must admit that Eric is handling the self injection regime well.. you just
have to admire his application and fortitude. As Eric explains – every does of
sandostatin is another dose that is stopping the serotonin and tumours from
doing their dastardly work.

The next objectives will be imaging studies and blood work in 2 months to see
what has changed after the first three months on Sandostatin – to monitor the
tumour growth as well as the carcinoid markers.

19 April 2006

Alien 2 – Updated

We have just retruned from the long
trip to and from Perth in one day (7 hour retrun journey) where we met with Mr
Harsha Chandraratna to follow up on the tests and imaging studies Eric has
undergone over the past few weeks.

The upshot is Eric has 6 small carcinoid
tumours in his liver and one in a lymph node. While we are not surprised at the
increase in tumour burden (the urine 5HIAA test results had doubled in just on 6
weeks) we are a little surprised at the number of them!

The upshot is that Mr Chandraratna has placed Eric on Sandostatin injections
three times a day with a view to changing him over to a long acting form in a
months time – as long as Eric’s body tolerates it and there are no prohibitive
side effects. We were treated to a great introduction to self injection and the
care of Sandostatin – a hugely expensive drug- by Mr Maher from Murdoch Hospital
Parmacy, who was enthusiastic about Eric going onto Sandostatin. Apparently he
has seen some remarkable results with its use in carcinoid patients.

Sandostatin is the drug of choice for these cancers (you can
find more about sandostatin here) as it helps to control the symptoms of
carcinoid syndrome including the effects of serotonin (one of the many hormones
released by carcinoid tumours) on the heart (Carcinoid heart disease).

Eric also may be included in a trial soon to be conducted by Dr Harvey Turner
of Fremantle Hospital’s Nuclear Medicine department looking at therapeutic uses
of Sandostatin on possible tumour regression. Fingers crossed that the trials
will start soon.

So all in all a mixed day for Eric… good news in that he has started his
Sandostatin therapry and this will help with the diarrhea and flushing as well
as help to protect against Carcinoid heart disease…but it does show that the
aliens have returned after a fantastic symptom free 18 or so months. We are all
confident that the Sandostatin will do its job and hold the aliens at bay.

Next steps… Long acting Sandostatin in one month, review after 3 months.
New imaging studies in three months to review progress and readjustment of
dosage if required.

26 March 2006

Alien 2 – After 18 months of clear results and excellent
health, it looks like Eric’s Carcinoid cancer is beginning to show up again. The
first inkling was in February when Eric’s 5HIAA urine test went from 36 way back
in June last year to 64 (50 is considered the high end of normal). We were not
rattled by this as the readings just prior to surger in 2004 was in the
900’s.

Eric had a CAT scan just prior to our February trip to Bali and we saw
Eric’s amazing surgeon- Mr Harsha Chandraratna for the results. Apparently Eric
has a ‘node’ on the liver which looks like it is the Carcinoid returning. So we
have now begun the ongoing round of testing – MRI, Octreoscan (4 April) and
blood work to see what, where and then we can decide how to treat it.

The
main concern is the effect of the hormones the tumours release into the blood
stream. The serotonin (only one of the hormones) is noted for affecting the
heart valves on the right side so we need to find ways of negating this. Heart
failure is the silent killer in carcinoid patients. The effect of the hormones
on the rest of the body is pretty obvious – flushing, blood pressure swings,
diarrhea etc but it is this effect on the heart that can be the most serious. We
know from the work ups at the time of surgery that Eric’s heart had been
slightly affected by the hormones – but it is something we are not keen to
encourage!

At this stage it looks like Eric will go onto Sandostatin (Octreotide)
injections. Initially this will be three times a day and then onto the
month-long acting variety. We are also lucky in that Western Australia is the
home of Dr Turner – a nuclear medicine specialist- who is looking to run a
medical trial on nuclear tagged sandostatin to help reduce tumour loads. Eric
has his name down for that as well!

For the moment Eric is doing ok, he is experiencing small flushing episodes
occasionally (although he doesn’t realise it) as well as the sporadic return of
nasty bouts of diarrhea which canbe quite debilitatig at times.

We will update the pages as soon as we have any further results.

June 22 2005

It has been some time since our last update…and seeing that Eric has just
had his latest checkup…now seems like a good time!

All is well as far as the carcinoid cancer is concerned. Eric’s latest 5HIAA
urine test which tests for excess serotonin was 36 which was down from the 54 of
the previous test and well within the normal range. This means that there is no
active hormone secreting tumours that are detectable in his liver..this is a
very good thing!

Eric had a CT scan of his liver and abdomen in May and we got the all clear
on that as well last week. No sign of tumours anywhere at the moment.

The only complication came two weeks ago when Eric began experiencing
significant abdominal pain (and accompanying high blood pressure) that could not
be controlled with normal analgesia (paracaetomol and codeine). We had a couple
of trips to the hospital emergency department which resulted in Eric being
admitted to the local hospital and put on a drip and morphine for 24 hours and
then he was transferred to Perth and our beloved Murdoch SJOG hospital so he
could be placed under Mr Chandraratna’s care.

Just a side note… arriving at Murdoch was a little like coming home…
frightening isnt it? We arrived and Jen, Eric’s amazing enrolled nurse from last
year came racing up the corridor and threw her arms around us both… and
proceeded to make sure everything was just right. We also caught up with our
very special volunteer friend and facilitator extraordinaire Colleen… Thank
you so much to everyone at SJOG Murdoch… you are all very special, caring
people!

Another 3 nights in hospital while scans and tests we undertaken. Gradually
Eric’s pain reduced and he could come off the morphine and was allowed to go
home last Wednesday.

While there was no definitive diagnosis or reasoning given for the pain, a
sub-acute obstruction in the bowel/intestine was suspected. There was also a
small 4 cm soft nodular mass near the pancreas – what also showed up in Erics
blood tests was that he had an infection of some type. This gradually subsided
as the pain went away and was most probably related to the cause of the pain.

There is also a possibility that the pain was caused by adhesions from last
years extensive surgery and this became inflamed, irritated and infected. What
ever it was, it has gone now and Eric is once more fighting fit.

So given that there is no visible signs of cancer and Eric is not
experiencing any discomfort other than too much ’self imposed condition’ we have
to say that we feel that Eric is so very lucky to be symptom free and each day
is a very good day.

Friday 14 January 2005

Hi everyone, we thought that it was a time for an update even though there
really isn’t much to say other than that Eric is still doing so well. He has
gained back all the ‘condition’ he had from before the surgery in June, minus
the alien. This has been of concern to him in that he did enjoy his trim self
and we are working on diet and exercise to lose a bit of the weight he has put
back on.

Eric is back to working full time in Moon-Haven, making soap and handling all
the administrative tasks needed to run a manufacturing and retail business. So
yes its full on and he is managing well.

While there was no sign of any tumours in the CT scan way back in October, we
are not so naive as to think that Eric is totally out of the woods yet.

Lately there have been intermittent days where Eric hasn’t felt entirely well
or as if he was not ‘firing on all cylinders’ and of course this has been of
concern to both of us. Eric is due for his next 5HIAA test, to test for
serotonin in the urine (a tumour marker that was well within normal range last
September) so that will help us determine if these symptoms are just the result
of too much work and a build up of stress or something a little more sinister.

There has been no return of the debilitating diarrhea or the continual
flushing which are indicators of Carcinoid Syndrome that Eric experienced for
some time prior to diagnosis and treatment and are indicators of significant
carcinoid tumour load in the liver.

Here is a photo taken today of both of us in Moon-Haven, our piece of
paradise in Western Australia’s south-west.

We will post results of the 5HIAA test when they become available.

Friday 22 October 2004

The BEST NEWS OF ALL!!!! Eric’s CT scan was clear as a bell! There is no
visible cancer in his liver or anywhere else. This is absolutely fantastic news.
Mr Harsha Chandraratna (Eric’s miracle surgeon) is very pleased and so he should
be… as are we. While Eric is still regaining his stamina, the news that he has
no visible tumours is very, very welcome.

Eric will submit another 5HIAA urine test in 4 months and then he does not
need to see Harsha for a further 2 months after that (unless he runs into any
problems). So all in all a fantastic result and one we didn’t expect.

Eric now gets to play with his birthday present – a new bike- (Leonie got one
too) – all part of our plan to lead a healthier, fitter life.

Friday 15 October 2004

Apologies for the delay in getting this update out to our waiting
audience…but we have had the Perth Royal Show to attend and the local school
holidays which have made it extremely busy at the shop and added to the usual
chaos and mayhem.

Eric saw oncologist Dr Phil Claringbold on Friday October 1. Unfortunately
due to a lack of post operation images and information Dr Claringbold was unable
to offer much advice and was certainly unable to offer Eric inclusion in the Lu
177 treatment trials. The main issue is we are unsure as to what the quantity,
quality, locations and growth rates of the remaining carcinoid tumours Eric is
dealing with. We know that he certainly has some left but follow up CT scans and
a possible Octreoscan are still to come.

If we find that the tumours are growing at a reasonably fast rate, (remember
Carcinoids are considered to be slower growing than most tumours), they are
limited to the liver and nowhere else and traditional treatments like RFA and
other eradication methods are not effective in controlling them then Dr
Claringbold would consider including Eric in the Lu-177 treatments. For now he
wants to follow a wait and see approach – monitoring the growth rate of the
tumours and treating any carcinoid syndrome if and when it appears.

Along the same lines Dr Claringbold is also not recommending Octreotide
treatment (sandostatin shots) until such time as any carcinoid syndrome symptoms
appear – diarrhea, flushing etc. Eric’s 5HIAA levels in late August were 54
…well within normal limits. This was a good result and show just how much the
carcinoid tumour load has been reduced! We will monitor these levels quite
closely as it is a a good cancer marker for Eric’s carcinoid. When Eric was at
his worst just prior to his operation his levels were in the many hundreds.

Otherwise Eric continues to increase in strength each day. He continues to
tire very easily and the end of the day is a challenge for him.. he tends to
just rest or watch TV …thank goodness the cricket season has begun and is
being televised! He continues to battle with ongoing diarrhea which we do not
feel is carcinoid related but more a bug he may have picked up. We are getting
tests to check out that possibility. Eric has been going to work most days and
manages to get several hours of continued effort in but does avail himself of
the futon each afternoon for an hour or so. Thank goodness we have great support
at the shop and we do not have to worry at all about its running and ongoing
survival! Thanks to the girls and guys who make Moon-Haven such a fun and happy
place to be. Eric hates to miss out on all the action at work…so refuses to
stay home!
So that’s it for the time being… We see Harsha Chandraratna- Eric’s
surgeon- on Tuesday afternoon – with the results of the October 1 CT scan. This
will become a benchmark CT showing the new liver landscape and hopefully the
size and placement of any carcinoid tumours so they can be monitored over then
next few months. We will post again on our return to paradise.

Monday 27 September 2004

We’re home! Bali was absolutely fantastic…Eric was very reluctant to come
home. The sun, the pool, the food.. all did him a lot of good. Each day Eric
gained a litle more in stamina and his tan improved beyond sight! By the last
few days he was able to put in a half day shopping the remainder by the pool and
still feel able to go out for cocktails and then dinner. Eric has returned home
with a bit more weight- a little more than he would like – he was enjoying his
svelte self…and a lot more energy. The Bali objectives have been achieved!

We returned home to the news that Eric has his first appointment with Dr Phil
Claringbold – his oncologist- this Friday October 1. This is good news as it is
now three months since the operation. We also see Harsha Chandraratna mid
October with new CT scans to assess the current staus of the remaining
tumours.

So all in all progress is being made and all is well with the world.

Of great concern to us we have recently heard from Joy, who is dealing with
her own battle with lung cancer and various secondaries. She has been dealing
with this insidious disease for some time and is doing it tough. Please include
her in your thoughts and prayers.

Wednesday 1 September 2004

Well its the first day of spring here.. I know spring, according to Mother
Nature, doesn’t start until Sept 21/22 but in Australia, politically, it’s
today! Eric is doing good things in that he is finding he has less pain
generally and is beginning to sleep soundly again. These are excellent
improvements. He does find it difficult to keep warm and is still exhausted very
easily. Eric is sitll unable to visit the shop for more than an hour or two at a
time but enjoys catching up with everyone and loves the atmosphere there. We are
planning on attempting a few more visits this week.

We are off to Bali in one weeks time for 12 days… the plane trip, although
only 3 1/2 hours, will be exhausting for Eric so it looks like recuperation
around the pool will the POA (Plan of Attack) for the folllowing few days. We
have visited ourlocal GP and are armed with numerous drugs and rememdies for all
sorts of eventualities. If we run into trouble we can always just jump on a
plane and get home ASAP. That is one of the comforting things about Bali..it
really is only a few hours away from home.

Tuesday 17 August

Life continues in the Gully household. Eric continues in his quest to find
ways to become involved in running Moon-Haven. He has been down to the store 2
days last week which proved way too much for him. He ended up in pain and
weakened to the point where the following days were spent on his recliner in the
family room and resorting to the heavier duty pain medication.

I suppose it was inevitable, but Eric is becoming frustrated at his lack of
energy, the continuing and changing nature of the pain he is experiencing and
the lack of progress on access to further treatment. Eric’s next appointment
with his surgeon is not until mid-October where the 3 month CT scan (scheduled
for Oct 9) will be reviewed. We had thought that Eric would be referred to an
Oncologist by now but this has not eventuated. Fingers crossed that will happen
soon.

Meanwhile we have booked a quick trip to Bali for some much needed sun – it
is mid-winter here and it is beginning to pall with the rain and only the
ocasional sunny day. Eric has already reserved a poolside lounge for the
duration and is wistfully talking of ordering a Bintang (Bali beer) while Leonie
continues to suggest that perhaps a lime juice might be more in order!

Tuesday 3 August

There is not much to add to this week’s update other than Eric’s weight
finally seems to have stabilised. This is good news as the weight loss was
getting to be of concern to us with Eric becoming quite gaunt. I think Eric is
getting frustrated at his inability to do much of anything. Getting out of bed
and having a shower seems to take a lot of energy out of him and he finds that
he needs the rest of the morning in the recliner to recover!

Yesterday we took Leonie’s father out to a local winery to lunch for his
birthday. This was a big treat for Eric, being house bound and lacking in energy
has made life very limited for him . We also visited Moon-Haven on the way. This
was the first Eric has been to the shop in over 7 weeks! While the visit was
only for a few minutes it was a much needed boost for him. Eric managed lunch
fairly well but was well and truly exhausted by the time we got back home. – in
fact he complained through lunch that he didnt realise how much effort it takes
to eat! While he was hungry, the effort required to actually cut and eat his
Caesar salad was almost too much for him. Perhaps we overdid it a little for his
first time out! Needless to say it looks like Wednesday will be a very quiet
day.

We are hoping that Thursday Eric will come down to the shop (Moon-Haven)
while Leonie works for a few hours making her lotions and potions. We have a
fold out futon there where Eric can rest but still be part of the
procedings.Progress is still very much measured in baby steps and I think Eric
felt that he would be bounding around with untold amounts of energy by this
time. Hopefully now that the weight has stopped dropping off him his energy will
begin to return. He still has quite a bit of pain which require the use of heavy
duty medications but Eric is needing these less and less and tends to only use
the MS Contin( oral version of morphine) at night now to help with pain while he
sleeps.

The reality that Eric still has a long way to go with dealing with this
cancer, is sinking in. The battle is only just beginning…but we are both
prepared to do it justice!

Wednesday 21July 2004

We have just arrived home from Perth after seeing Mr Chandraratna for Eric’s
post op visit (and attending the Small Business Awards evening where Moon-Haven
were finalists).

Harsha is pleased with Eric’s progress and was able to answer all of our
questions. Eric’s weight loss is to be expected and is nothing to be greatly
concerned about. He has lost 4 kgs (approx 9 lbs) since coming home a 2 weeks
ago. This is most probably excess fluid that had built up post op as well as the
body not being able to absorb all the nutrients that Eric eats while the liver
regrows. Apparently Eric’s weight will stabilise soon we just have to make sure
he eats several nutritious small meals per day. Of course Harsha recommended
‘Ensure’ as a suppliment…something Eric is resisisting (have you ever tasted
Ensure?… I can understand his reluctance! ). Leonie has promised to make
nourishing protein enriched drinks with lots of goodies as a substitute.

Eric is to be referred to Dr Phil Claringbold and/or Dr Turner at Fremantle
Hospital for possible inclusion in an Octreotide trial as a follow up to his
surgery. Apparently these doctors are interested in the possibility of nuclear
tagged (Lutetium 177 or Lu-177) sandostatin (Octreotide) shrinking carcinoid
tumours. Rotterdam has reported good response rates with remission on average
for those patients responding to the treatment of 30 months. This is a
link to the abstract concerning their experience.

Eric is doing well although I think a little frustrated at how weak he still
is. While he is not as out of breath as he was walking to the bathroom, it still
does take a lot out of him. Days are mainly spent on the recliner in the family
room flicking through foxtel and dozing. Our walks are becoming longer and Eric
is managing a little time at the computer – so all in all good progress.

As you may know our buisness Moon-Haven was
a finalist for the Western Australian Small Business Awards and we attended
the black-tie event on Tuesday 20 July. Eric amazed one and all by staying for
the whole evening. Admittedly dancing was not on his agenda that night but
everyone was absolutely delighted to see him.

Doesn’t Eric (left) look fantastic? You wouldn’t think that he had had major,
major surgery 3 weeks previously.

Thursday 8 July 2004

Armed with a several analgesics and instructions to see Mr Chandraratna in
two weeks Eric was discharged from SJOG Murdoch today at 11.00 am. Before
leaving Eric walked into ICU to thank everyone there and do a victory lap so to
speak.

One of the realities of life in specialised units such as ICU is that the
staff rarely see the results of their hard work, so Eric had promised to visit
before leaving. It was good to see some of the nurses, doctors and staff who
helped Eric through those first critical days. They were as amazed at his
progress, as we are.

Although the trip home was only three hours, after major surgery and hospital
life for two weeks Eric was well and truly ready to collapse into bed when we
walked into the door. It is 2.45 am Friday morning and Eric has had his first
unbroken 4 hours of sleep and counting, since the first days in ICU. One thing
we have realised is that you dont get to sleep in hospital!

Now begins the road to regaining strength and endurance.

Medically, Eric has been taken off the Octreotide which will be reviewed when
we visit Mr Chandraratna in 2 weeks, his blood pressure is now superb (110/70
ish), pulse rate in the low 70’s and he is feeling alert and amazingly well.
Pain levels are readily controlled and usually only gets to discomfort level,
stamina is something that needs to be acquired as walking to the ensuite can
make him breathless.

The journey to health is far from over…it is just beginning …but what a
beginning!

Tuesday 6 July

Eric is free!!! As of 2.45 pm today Eric was disconnected from his last
intravenous device. He was taken off the TPN and will have the CVC tubes in his
neck and the last drain removed from his abdomen. Staples will be removed and
it looks like Eric can go home Thursday or Friday.

What a difference a weekend makes. When Leonie left on Friday Eric was being
placed on TPN to boost his nutritional intake, he was limited to nourishing
fluids, was still on an IV drip, the nasal gastric tube was a constant
irritation, he had two drains in situ and was frustrated at the lack of
intestinal motion so to speak.

When Leonie returned on Monday, Eric was scooting around the ward with his
drip trolley in tow. Eyes bright and with an incredible internal energy Eric had
made a dramatic improvement in just three days. The TPN protocol seems to have
given Eric’s body a boost in the healing stakes. Monday he went onto solid foods
and this gave immediate results in the bowel department. Amazing what you choose
to celebrate on this journey.

The histopathology report on the alien and its friends has returned from the
pathology lab. For all those out there with bets on the size of the tumour mass,
it was slightly over 4 kilograms (9 lb for the non-metrics). While the small
intestine showed macroscopic signs of a tumour, the microscopic findings did not
support this, however the mesentery samples were most definite in their
carcinoid findings. So at this stage we are unsure as to where the primary
is/was situated. The mesentery may have been the site of the primary tumour but
we cannot be certain. While the body still plays host to any carcinoid tumours
then further tumours can develop. This means that Eric must continue to undergo
regular scans and imaging to monitor tumour growth and development. Eric is
scheduled for scans in three months time

Dr Chandraratna has just been in and is very happy with Eric’s progress. All
liver function tests and outputs are well within the expected ranges, nutrition
and blood tests are looking good and it looks like Eric is well on his
way to going home Thursday or Friday.

Dr Chandraratna has recommended Eric to a local trials using Octreotide
(Sandostatin) for the treatment of Carcinoid tumours/syndrome. We feel fortunate
that studies are being undertaken in our home state for this relatively rare
condition.

Friday 2 June 2004

Here we are 7 days post op…what a difference a week makes!

Eric is now back on the ward…and his own private room. While he received
superb attention and care in ICU, it is lovely to be able to close the door and
shut out the various noises inherent in hospital life. Leonie has been lucky
enough to be able to board all the while Eric has been in ICU and moved up to
the room with him although the quality of bedding in the ward left a lot to be
desired!

Eric is progressing more each day. Now that the epidural has been removed the
smorgasbord of pain relief medication has begun. Trying to find a good regime of
pain relief has been an interesting exercise. It seems to be that a ’suck it and
see’ approach is the only way to go here. While Eric’s pain levels seems to be
manageable, there are times when the pain is intense and difficult to deal with
and others when sleep is the only option! Each day refines our approach and Eric
is now finding it easier to communicate and is needing less and less
narcotics.

Various drips, drains and appendages have been removed. Eric is currently
attached to an iv line through his neck which delivers his re hydration fluids
and electrolytes, oxygen nasal prongs to help him with his breathing (he is down
to 2 litres per minute), nasal gastric tube- more about this later, two drains
which have been shortened and self contained bags placed over them.

Eric is now quite mobile getting out of bed by himself to go to the toilet,
he sits up for an hour at a time and now goes for a small daily walk with help
from Leonie or nursing staff. Hopefully the weekend will see him walking without
oxygen.

Warning: Reading the following paragraphs are quite descriptive and
may not be for the squeamish!

The main issue Eric is currently facing is a condition called ileus. This is
characterised by a the non or minimal absorption of nutrition through his
stomach and gastrointestinal tract. Apparently the normal ripple like motion
(peristalsis) of the GI tract is not happening or is
diminished. While Eric has had his first bowel motion (which is something to be
celebrated!) and is beginning to pass gas (the things we get to talk about
here!), his stomach is not really absorbing much at all.

This is a definite concern and 7 days post op is considered too long to be
without real nutrition. The reality of this condition is that whatever Eric puts
into his mouth has to in effect be suctioned out through his nasal gastric tube
(NGT). This can be quite gross given that Eric is now consuming “nourishing
fluids”.

Due to the continuing ileus and the ongoing weight loss Eric is experiencing,
he is now onto a TPN
regime (Total Parenteral Nutrition). this
means that his nutritional needs are being given to him through his neck IV line
for 12 or so hours each day. Hopefully this is a temporary arrangement and his
GI tract will wake up in the next few days. As the doctors say… he has had a
significant “insult” to the area and it may take a little time to recover, he
just doesn’t need to starve while it does. There are a couple of concerns and
possible complications that can arise from TPN but Eric is being closely
monitored and his blood tests provide information that allow the pharmacists to
tailor his TPN formula to his individual daily needs.

After being away from Moon-Haven for over two weeks I (Leonie)
will return to Busselton for the weekend to make some much needed soaps and
potions, help out with stock take and catch up with all the chores that need
doing around the place. A check up on the various Gully animal family members is
definitely required (Tatiana and Tsarina the blue russian cats apparently are
becoming decidedly aloof – while Scotty the fluffy dog has become addicted to
Red Rooster chicken!). While I do not want to leave Eric at all, he is in very
good hands and we be in contact by phone several times a day. While our home and
the business is in good hands we both still fret about not being there on a
daily basis. We both love working at Moon-Haven with a passion and Eric is
already talking about what we want to next accomplish in the business…even
through narcotic induced hazes!

Check in a few days time for the next update…most probably
around Monday 5th July

Wednesday 30 June 2004

A major milestone was accomplished today. Eric went for his first walk!
Admittedly it was slow and with a significant amount of help but walking around
the nurses station is a benchmark of strength for the inpatients in ICU.

Current state of play is that most of the drips and monitoring equipment have
been disconnected. Eric still has two drains emptying the op area into drainage
bags as well at the catheter. IV fluids are being infused through the arterial
line in his neck. This is also where any IV drugs are administered. The epidural
was removed Tuesday morning and Eric has been on oral and intravenous pain
relief since. We are still finding the best method and dosages that is
appropriate to help Eric manage his pain.

We are also waiting for Eric’s body processes to ‘wake up’. It is amazing how
we wait and watch for any ‘movement’ in the lower regions. Bowel sounds will be
music to our ears! Eric’s stomach is only just beginning to absorb fluids but
most of his liquid intake is still being aspirated out of his nasal gastric
tube…yes.. yet another invasion in his body and one that Eric would dearly
like to be rid of!

Eric still needs his oxygen nasal prongs with the oxygen at relatively low
rate. With the surgery on his diaphragm and the large lateral incision under his
ribs, it isn’t surprising that he is having a little difficulty keeping his
oxygen rates up in room air. This will improve over the coming days as he moves
around more and breathes deeper.

The staff at Murdoch have been absolutely fabulous! From the CPAs including
Milka and Chris, to Caloyn the Physio, Jo, Shirlene, Deirdre, Monica, Chris,
Frank, Gladys, Ragbir, Sukh Jit of the amazing dahl! (ladies please excuse my
spelling) , Sunny Claire, Fiona – oh the list goes on. And I haven’t mentioned
the superb team of docs like Jane, Craig and Chin who have been looking after
Eric’s every need. Each and everyone of these dedicated people have made Eric
and Leonie’s stay in the hospital much more pleasant than we had intended.

Monday 28 June 2004

3 days post surgery:

Eric is doing so well it is difficult to believe that it is only 3 days after
his surgery.

Current state of play is that Eric is still in ICU being cared for by the
great team there. Every day brings even more improvement and further
stabilisation.

Current issues include his blood pressure still being too high, clotting
factors in his blood are still a little low and they have been giving him extra
units of FFP (Fresh Frozen Plasma) and albumin to help with the process. He has
the epidural in place which is giving him superb coverage for his pain. It looks
like that will be removed lunchtime Tuesday and replaced with a morphine pump
which he can control when needed subject to certain limits of course!!!

Eric is still on oxygen by way of nasal prongs which he still needs. When a
person is in bed for a period of time their lungs can become a bit waterlogged-
which Eric is starting to experience – so he is visited each day by a
physiotherapist to be coached in breathing and importantly coughing. Given the
excellent pain control Eric is experiencing, this has proved relatively easy to
do but very tiring.

I suppose the main thing Eric has to deal with is the tiredness. At times he
tends to drift in and out of sleep and some conversations can become quite
disjointed which the remainder of the sentence coming some minutes after the
beginning.

All in all Eric is doing fine. We are looking at getting him out of bed early
this evening to have a sit in a chair – a major feat and logistical exercise
given the number of tubes and appendages he has attached to him.

Eric says ” Hi everyone, feeling great..hugs and love to everyone!”

PS: Dr Chandraratna has just come in with his camera and shown us pics of the
alien…all we can say is wow… its a bit like looking at a newborn baby and
wondering how the heck it fit into its mother’s stomach!!! The primary tumour in
comparison is so small …all pics will be posted so (in a separate section to
protect the squeamish …including pics of stitches, drains and dressings. Thank
you to the perseverance and patience of nurses Jo and Caroline and letting us in
on the act.

Will update again in a couple of days of time…until then love and thanks to
everyone.

Surgery

From the outset please forgive any medical or spelling faux pas,as at the
moment i am only relaying what i have been told verbally .. and that relates
directly to what i have been able to retain! Hopefully over the next few days I
will be able to go over the facts of the surgery and correct any
mistakes

It is now 10.30 pm and Eric returned from theatre 45 minutes ago after going
in at 1.00 pm. I have been visited by both Mr Harsha Chandraratna- surgeon and
Dr John Storey – anesthetist. The doctors and the medical team have been amazing
in their dedication and approach to dealing with extracting Eric’s alien
visitors..

Eric has undergone a small bowel resection (the primary was found in the
middle of the jejunum), removal of lymph nodes from the mesentary as well as
removal of a huge tumour from the liver … which of course required an extended
right lobectomy of the liver (including removal of the pesky gall bladder and
the 3 cm stone!). The surgeons also had to remove (and repair) a portion of the
diaphragm as the liver tumours had begun to invade the pulmonary space.
Apparently the thinking upon opening Eric up, was to attempt to get everything
in one go as the impact on Eric of completing another surgery in two weeks time
was thought to be too much.

Durng the 8.5 hour procedure Eric lost approximately 5 litres and received 11
units of blood. He has received significant amounts of frozen plasma as well as
electrolytes and other fluids. He had two episodes of low blood pressure
(readings of 50) due to bleeding which caused significant concern as well as the
initial episodes of hypertension (high blood pressure)

The tumour mass from his liver was described as something between the size of
a basketball and a volleyball. We have yet to find out the weight. Watch this
space.

The intensive care team is working on stabilising Eric as I type. His blood
pressure is now very high again with readings in the 220/90 area. Given the
amount of fluids and blood that has been pumped into him, it is not surprising
that they are having a time of getting him stabilised. There are concerns that
arise from transfusing the large quanitites of blood that Eric has received.
Apparently increasing the clotting factor in the blood is an issue, getting his
body temperature back up to normal is another.

There is some risk that the bleeding and subsequent low blood pressures
experienced in theatre may have caused some damage either to his heart or his
brain by way of a stroke. The doctors feel that Eric most probably is ok but
they will not be certain until he regains consciousness. This may not be for a
day or two as they will keep him sedated until his metabolism and vitals become
more stable.

So given the huge operation Eric has undergone all we can now do is wait and
watch…send positive thoughts and allow the medical staff to do what is
necessary. I will update this page as soon as I have any further information.

It is now 8.30 am Saturday morning some 10 hours post op and Eric is doing
good things. He is still on a respirator and is sedated. Blood pressures are now
more reasonable and the doctors are talking about taking him off the respirator
this morning if his blood tests come back ok. Eric is fighting his breathing
tube at times and tends to chew on it… which leads the staff to feel that it
may be irritating him. Even though it is still early they feel that perhaps the
best thing to do is remove the tube and commence him breathing on his own. With
the epidural in place they are confident they can give him good pain control and
are more confident than if it was not there.

Our many many thanks must go to the heroic efforts of the our marvelous
doctors Chandraratna, Rao and our ever vigilant Dr Storey – who had a tough time
of it helping Eric stay with us anesthetic wise during the operation. Let us say
it was far from routine!

As above I will update the page as circumstances require and time
permits.

Dateline 3.00 pm Saturday :

Eric is now awake, his breathing tube has been removed and he is alert and
giving the nurses cheek. Eric is doing amazingly well. The epidural is working a
treat for his surgery site (it is a thoracic block so is quite high up the
spine.). He has some shoulder pain which is being controlled via one of his many
drips, lines and assorted intakes. Otherwise it is an amazing to see him making
jokes and being his usual charming self.

Photo of Eric just after regaining consciousness on Saturday with Leonie’s
sister Robyn and Clinical Nurse Monica. Many many thanks also to all the Nursing
staff at sJOG including Jenn the Fairy Goddess and Singing Sue of ICU, the
marvelous ancilliary workers and volunteers who have been helping Leonie through
the last few days, plying her with food…finding accomodation and just
generally trying to find ways of making it all a little easier for her.

To catch up on the back ground to Eric’s Story go to
The Journey so far..

 

Eric and his Alien- Living with Carcinoid Cancer and Syndrome

If you don’t suspect it …you can’t detect it!

As you are aware from the above, Eric has been diagnosed with Carcinoid
Cancer. This is a rare cancer, accounting for 1 in 200 cancers diagnosed (only
0.5% of all cancers). A carcinoid tumor. is one that excretes excessive hormones
into the body. They can release a veritable cocktail of hormones but the most
common is Serotonin. Thankfully the liver usually filters out these hormones and
their effect is not shown on the body.

About 10% of patients with carcinoid tumours go on to suffer a constellation
of symptoms called “carcinoid syndrome”

Carcinoid syndrome is usually caused when the primary cacinoid tumour metastases to the liver. When this happens, the hormones
are not filtered out and neutralised by the liver but are excreted into the body
to have their wicked way. Symptons of carcinoid syndrome can include:

• Flushing of the face, upper arms and chest
• Often a change in blood pressure- usually downward but increases are not
  uncommon
• Explosive (the best word to discribe it) diarrhea- can be chronic
• Breathlessness
• Asthma like wheezing
• Tricuspid and pulmonary heart valve damage eventually
  resulting in in congestive heart failure. Early signs can be lower leg odema
  (fluid retention).
• Telangiectasia- little red spots on upper chest and
  arms- can look like dilated/broken capiliaries or in Eric’s case like small red
  freckles. This sign usually is a result of ongoing flushing.
• Enlarged liver (hepatomegaly) from tumour bulk

Note that symptoms vary from person to person. Some
people only every get the flushing and occaisional diarrhea -which often gives
rise to some sort of misdiagnosis of menopausal symptoms and probably Irritable
Bowel Syndrome (IBS).

The rarity of the incidence of carcinoid mailgnancy often means that the
cancer goes undetected for many years. The symptoms are often misdiagnosed .
There is a slogan amongst carcinoid patients which rallies us to educate our
physicians and medicos “If you dont suspect it …you can’t detect it!” We need
to ensure that carcinoid becomes a known disease and one that comes to mind in
front line doctors so at least the cancer is supected and ruled out after
testing. Too many of our number are misdiagnosed and hence the disease takes it
toll on the body until care becomes palliative and not curative.

If you would like to know more about Carcinoid Cancer please go to our Carcinoid page for links, further information, support
groups and a plethora of information sources.