CT scan

Went for another CT scan yesterday. I'm starting to get used to them. This one was different in that I had to drink the fluid before the scan as well as get the dye, last time it was just the dye. So it takes a bit longer, about an hour rather than 15 mins.

After it was done I grabbed some fish and chips for Nicholas and I to have for lunch so not all time wasted :)

Donna and Marcus had gone to the dentist to get Marcus a filling.

Nothing else exciting.

A schedule!

I now have a schedule for treatment. I met with Niall yesterday and we have scheduled the chemo to start next Friday. 1st time is in for an overnight stay, not sure if it is always overnight or just first time. It is called the Sutherland Day Chemo centre, seems kind of strange if it is overnight instead.

Unfortunately I didn't get into the other study he was hoping for. It still hasn't got ethical board approval and he is now not expecting it until end of Feb at the earliest, too late for me. The downside of that is that the antibody for this type of cancer is not covered by PBS. if I had breast cancer it would be but apparently I can't claim it is man boobs of the stomach desspite being the same cancer and treatment. Niall has put me into the Roche access scheme which provides a subsidy for the antibody drug. Basically the subsidised cost is close to $10k but it is the  best chance so I'm doing it. The full commercial cost is closer to $ 50k so that's not a bad discount.

Everything is going well at work with AJ and everyone being very supportive.

Next week before the chemo have to have another CT scan. This is to baseline the starting point so we know how effective the treatment is. I had another lot of bloods done yesterday, I better get used to them as I think they will become a regular thing from now on.

Still feeling good and looking forward to the weekend away at Corowa.

Other fun things

Amongst the other fun things going on around Christmas we had the following happen.

Our main computer (Donna and mine) hard disk crashed day  before Christmas.
On Christmas day my new Galaxy S3 stopped working.
A couple of days later the dishwasher started to leak and finally the TV in our bedroom finally gave up the ghost.

We now have a new hard drive, I'm still waiting on Optus for my phone, a new dishwasher was installed the Sunday before new years and we bought a new TV which we put in downstairs and moved the downstairs one to our room.

From what was originally going to be a quiet Christmas we had quite a busy time.

Biopsy results

31/12/2012

Niall rang and let me know that the first half of the biopsy results are back and that the MET is positive which is good for the study but the HER2 is borderline. This means they will need a re-test. 

4/1/2013

Just spoke with Niall about the biopsy results. Good and bad news, as usual. 

Bad news - the re-test of the HER2 has come back and it is positive not negative so I am ineligible for the study. 

Good news - Now that we have confirmed the type of tumor he has suggested a different study which he is also part of. It hasn't opened yet but he expects it to in the next week or 2 and with me as a confirmed candidate it should expedite it a little. This study is specifically for people with HER2 positive tumors so is very god for me. This one involves a drug that is a known anti-body to HER2 tumors which I definitely get as well as a new drug being tested as an anti-body which is a double blind so I might get it. All in addition to the chemo. 

The Really Good News - Niall confirmed today that the is no spread further than what is already known and so it is a "nodal disease" and not into any other organs. 

Catchup Posts

I have made a number of catch up posts to fill you in on the complete story. I will post them and you are welcome to read them if you want, the last one (PT 4) in particular will help with understanding today's post.

History. Pt1

29/11/2012

Today I was diagnosed with cancer of the stomach. Apparently more common in Asian countries it is unusual to see it in Australian caucasians. At this stage I don't really know exactly what it is  i have. I get more tests tomorrow, a Ct scan, some blood tests, and an ECG.

How did i get here you ask? Interesting journey so far.

3 weeks ago I visited my local GP for what I thought were chest pains. After a quick check it wasn't chest pains, possibly it was my liver. Off for some blood tests, lucky for me the vampire was still at the surgery and able to do them immediately. They came back OK for the liver.

Next was an ultrasound for most of the other organs.. Nothing specific came back from them so next was a trip to the gastroenterologist. That seemed simple enough and at this stage there was no rush. Again I was lucky, there was a free slot in the specialists schedule that Saturday morning for a gastroscopy.  As there seemed to be no rush at this time we booked the next review for a fortnights time.

So last Saturday nice and early I go in for the scope. Quite painless really and I woke up feeling groggy but fine. Then the Dr came in. It didn't sound too bad at first but then it went something like this. You have an ulcerated gullet and a very inflamed stomach lining. We immediately changed the checkup for today instead. Most of the tests will be back, not all, but it was important to meet straight away.

So today what happened. It went something like this. I was feeling very good, the pills i had been given were working really well. Unfortunately I have some bad news for you. The ulcer region is surrounded by this raggedly red region, the inflamed bit, and it is too big. It could be benign but it is too big and needs to come out. The specialist surgeon I normally use is in the UK until the 14th of Dec and I am having the girls out front try to contact my second choice and see if I can get you in earlier to him.

Anyway it turns out he can't see me until the 10th instead we book in for the first choice on the 14th. Suddenly everything now is really urgent.

So here I am again back to where we started. I have to have this thing removed from my stomach. I have cancer they are not sure how far it has travelled and tomorrow I get a Ct scan etc. I'm meeting next again with Dr Malki to seethe results from tomorrow.

My  intention is to document my daily journey. I suspect that it will be pretty boring most of the time as the pills I have are taking away any pain I have but I will try to anyway.

History Pt 2

2/12/2012

So it is Sunday and things have been going get well. The pills I am taking are still working well and I'm not feeling ay pains.

Friday afternoon was an afternoon of tests. Firstly there was the CT scan. I've never had one before, although Nicholas has had many, this was definitely my first.

It involves lying on my back while it rotates around me taking thinly sliced images of my torso. I was advised to lie very still and just do what the machines tells me to. Yes lt talks to you.

I needed to have an iodine solution injected to give better contrast. This time I was told that I will probably get hot spots and that this is normal. What they didn't say was that you may also feel like wetting yourself or passing gas. I certainly felt like the second one. So with butt cheeks firmly holding tight I had my first CT scan.

It was all over fairly quickly and I was able then to head on to my next lot of tests. The good thing was they were in the building next door. The bad thing was no appointments taken, you get taken as you come.

So with an expectation that I was going to be there a while I headed over. Surprise, straight in for some blood tests and an ECG. Never had one of them before either. She was very nice about it and apologised for having to shave a bit of my chest to do it. Again out was all over fairly quickly and I was off.

05/12/2012
It is Wednesday now. Still I am feeling very good. Whatever is happening inside me is still not showing up outside. The Nexium is  keeping every thing good.

Going to French class again tonight. It is quite heavy going but I'm enjoying the work.

9/12 Last nights dinner caused a bit of reflux. Reflux as it applies to me is not the usual burning acid up the oesophagus but rather a deep pain in the lower chest stomach region.  Anyway hopefully getter better now as it is Sunday afternoon and I've been pretty good.

I go for a PET scan tomorrow at 7.45am. I've never had one before and according the notes sent to me by  the hospital it will take a little over an hour.

10.12.2012
Went for the PET scan today. First they put a radioactive trace into you. Then you have to lie down for an hour so that the trace distributes throughout the whole body. I got in an hours meditation minus the snooze. Quite relaxing really.

Then into the machine for about 25 mins. It would be all right except your arms are over your head the whole time and go to sleep.

So apart from taking a long time it really is relaxing.

Lastly the Nexium is still doing its job as I feel pretty good.

History Pt 3

14.12.2012

Visited surgeon today. The news is not good. I have an advanced tumor, opportunity now for surgery has passed. The PET scan showed up bright spots on some lymph nodes around he stomach and behind it. Chemo is now my best option. Before that starts though he wants to do a physical check that it also hasn't found its way onto other organs. This will involve another gastroscopy and at the same time a staging laparoscopy.

Apparently this is keyhole surgery in 2 or 3 points. They stick a camera in just above the belly button and have a look around. If they need to they put in 1 or 2 extra holes so they can take biopsies.

Unbelievably they have booked me in for today, urgently they are chasing a hospital bed and anesthetists etc.

They have already booked me in to see an Oncologist next week.

15.12.2012
Just spent the night in Warringal Hospital. It is a nice place and they look after me very well. It is about 7.45 in the morning breakfast has just arrived.

Had some Cornflakes and now I am feeling it.

I feel like someone has been punching me in the stomach. When I sit up my collar bones and shoulders ache. Apparently this is due to the gas they use to expand parts of the abdomen so they move the camera around. This stay in the body and goes to the highest points. Eventually it will be absorbed by the body but until then I can take panadol for it.

What is a surprise is that there is 4 holes not 3, I'm not sure if that is a good thing or not.

I am to check out today, but I am not sure when or what the process is. Someone will no doubt tell me.

16.12.12
Well I didn't get released until after midday. The hospital had a Code Red in the day surgery ward. Everything was in lock down for over an hour. Eventually the nurses contacted the doctors who said I could be released. 

History PT 4

Wednesday 19/12/2012

I met with A/Prof Niall Tebbutt who is now my oncologist. The shear speed of all this is amazing. I barely have time to see a face let alone remember one. I suspect however I will be remembering Niall's as we will be seeing each other for quite  while. 

Diagnosis - I have what they are treating as stage 4 Gastric cancer. The tumor is just below the point where the esophagus joins the stomach. It can't be treated by surgery as it is too advanced and can only be treated by chemo. It has spread to a number of lymph nodes around the stomach and also to nodes behind the stomach close to the aorta. The results of Friday's biopsies are not back yet so can't tell if anything else. 

I will be getting ECX chemo which is a 3 week cycle of chemo for about 6 months (24 weeks). 2 are delivered by direct injection administered every 3 weeks at the hospital and 1 by tablet taken every day. To be eligible for the study I have to be MET positive and HER2 negative.  From the laparoscopy biopsies they will test them for the MET and HER2. Hopefully all this starts sometime in January. 

        Lastly he is expecting the results for the biopsies sometime before new year. He will                                    ring me before end of year to let me know. After that he is on leave until end of Jan but will have things organised to start as soon as possible after the results come in. 

Due to Christmas and the rush of all this, plans are a little hard to make.  So we will be having a very quiet Christmas with nothing planned. 

Thursday 20/12/2012

They've taken me off the Nexium (last Saturday) and put me on Brufen which I hadn't taken until today and my ulcer is now really bad. I did ask the nurse on Saturday if I should go on Brufen given I have ulcers caused by NSAID and she said it was OK. Well she is wrong. 

Friday 21/12/2012

Rang Tebbutt and asked about alternate pain relief for the ulcer. He has provided me a script for OxyNorm which apparently is a very powerful pain killer. It has some side affects though according to the Doctor and the pharmacist. It causes drowsiness and can cause constipation among other things. I discussed with  the pharmacist what I was taking it for and he suggested something else which is not a prescription drug but is a strong one for ulcers (Somac). 

So I have the OxyNorm but haven't taken it, I have however taken a Somac.

Saturday 22/12/2012

The Somac worked well, I slept well and the pain is almost gone. I still have some Nexium so I will finish them but at half the dosage, ie one a day until they run out. I have a repeat script for them also so will keep with them until finished. Then take the Somac.