Chemo maintenance

You may remember our not that now I am in remission I have to have a ct scan every 3 months to check on things.  It is part of the agreement to keep getting the maintenance drug. 

So last Friday I had my first quarterly ct scan.  It may sound a little strange but I was far more nervous about this one than any of the others. Up until this one I had nothing to lose. All the tests until this one were either confirming the diagnosis or the treatment and since the diagnosis was already bad it could only look up or at worst stay the same . This one and all future ones I actually have something to lose. So I was nervous going to see Niall today.

The good news I am still in remission !  Now 3 months of not thinking about it.

Maintenance treatment

I know I recently said how good it was to talk of something other than the Chemo but I had to share this. 

Today I had one of my maintenence treatments which usually goes without much effort but today was different.  The nurses (yes there was more than 1 having a go) managed to dig a number of holes in me trying to make a connection with a vein.  I'm glad I shaved nearly all my arm although I will shave a little higher next time. 

In case you can't expand the photo there are 4 spot although are actually 5 holes,  2 are covered by a single spot. 

AT LAST- Something other than Chemo. Trip to BRIS. Day 1 MELB to Cowra

We're enjoyed a slow leisurely trip to Cowra. Slow because after Crossing the border into NSW with the boys driving we could only do 80Km/h . It gave me the chance though to take some photos out of the window of the car. I like Cowra as do the boys especially Nicholas who wanted to go to the Japanese gardens again, so he and I did it again, we both enjoyed it and I got some more photos.

 Japanese gardens

Me and Nicholas at the gardens. 

 Sunset from our room in Cowra. 

Round 6 tongue

I've haven't until now been able to capture a picture of my tongue and what happens to it at times.  It is one of the things that make it hard to eat. 

In the photo below I have circled  the crack that appears in the middle of my tongue. This is by no means the worst it has been at times but the first time I have managed to get a photo. It can really make eating difficult. At least now I have it recorded.

It is nearly over and I expect the symptoms that are still here to start easing now. YEEHAR!

Round 6 - The END

Yeehar!!!!

The end of the chemo drugs and yes I feel very happy about that. No the side effects have not yet worn off so I am still peeling (particularly the feet), my mouth still has trouble eating, and all the rest but this is it.

On Wednesday I got the best news I could hope for from Niall, the CT scan I had last week shows that the cancer is no longer detectable which means I am in "complete remission". I put that in quotes as Niall normally doesn't usually use words like that so it surprised me a little and made me very happy. Of course he then qualified it as he always does, which I understand, and stated it just meant it was under control not gone but that is a hell of a lot better than the alternative.

So I had my first non-chemo maintenance treatment yesterday. This is just the Herceptin drug which has very  minimal side effects. By very minimal I mean nothing quick like what I have been having although there is a small chance that it may cause heart damage. So every 3 months now I will be having a CT scan to make sure it stays under control and every 6 months a heart scan/test (I haven't had it yet so I don't know what it actually is). The non-chemo treatment is only about an hour to an hour and a half and only about 1.5 litres  so none of the expelling of previous.

Just need to work out how to celebrate now.

Round 6 - Week 1

Well, once again the unpredictability of the process has been fun. The break did me good and I felt much better going into this round. My hands and feet are still reasonable considering but there has been an unusual extra side effect. My toes and balls of the feet have been numb but they are not burning yet like other times so I am hoping it is a good thing.

It's nearly the end of week one so the fluid dump has started and last night wasn't good but not as bad as  I had anticipated. Since I started the high protein diet the dumps have been less severe but longer in duration. My eyes are really bad this time, they seem to be drying out much worse this time. I really hate this time of the process, I just don't feel like eating anything .

Anyway in 2 weeks it is over and I move on to maintenance. Then on to Brisbane and a holiday, which I really need despite spending a lot of time lately resting, but it is not a relaxing rest as I always feel so tired  after it. I am so looking forward to a real break .

Round 6 - The beginning of the end.

The beginning of the end of the chemo treatment not me, in case you got the wrong picture. I intend to go on for a long time yet and whatever disease is inside me had better get used to that.  Fighting words I know but I am feeling much better this week so I can afford to be bold.  When I feel like crap next week I may not be so fiesty. In 4 weeks time  I'll have the ct scan and I'll be back to fighting words.

Not much else to say this week other than I am exercising and feeling good right now.  Next report in news at 11.

Round 6 - Postponed

I have 2 pieces of good news from Niall today.

1. We are postponing round 6 to next week due to my hands and mouth not having recovered sufficiently from the Cisplatin to proceed. This is because without sufficient recovery between rounds permanent nerve damage can be done. So it is treated fairly seriously. No surprise there.

2. The very good news is that because I have managed somehow to stay on a relatively high dose of the chemo drugs, in particular Cisplatin, round 6 is to be my last of the chemo treatments.  WOOHOO!!. I will remain on the Herceptin for as long as it continues to due the job. It has almost no (they won't ever say "no side effects" these days) side effects so no problems.

I will have a CT scan will round 6 is completed and hopefully it will show everything is under control.

Round 5 last 2 weeks

Wow it's been 2 weeks since my last blog. This has been probably the most inconsistent and confusing round yet.  Every time I thought a symptom had finished our at least was easing based on other rounds it would come back.  It's been stop/start, come, go, come back again. My hands are the worst and they really haven't yet gotten much better, although they haven't peeled, so not as bad as round 2.

Close behind is my mouth and appetite.  By that I mean my mouth is dehydrated and my tongue is actually cracking down the middle.  Everything still tastes like crap which always happens but it's usually gone by now.  It's really hard to get excited about eating anything when it tastes awful and hurts to eat. 

I doubt very much that I will be doing round 6 this week as my hands in particular just haven't recovered enough. As this is a side effect that is cumulative it needs to be reasonably recovered before we start the next round. 

Tomorrow is the appointment with Niall so I let you know when I do. 

The funny thing is other things such as my feet are recovering well, which is strange because every other time they followed the hands, but not this time.  Like I said inconsistent and confusing.  Anyway better feet means I got to walk on the cross trainer for the last 2 days.  I really need to get some muscle tone back, the high nutrition /high protein diet means I maintain weight better but I think it's mostly fat. I'm currently just doing high protein and cutting back on the nutrition a bit. 

Round 5 Days 2-7

Well, it's been different again this time.  Although there are similarities each time it also is never quite the same. 

The fluid loss and the metallic taste both came early and at the same time. I really hate the metal taste as almost everything becomes hard to eat, and my sense of smell, for some reason, is magnified and even things I have always liked I can no longer stand the smell of.   Not really pleasant and way more fatiguing.  Fatigue has been an issue this time but I suspect it I think back yard enough I have always been fatigued around this time, I was probably too tired to remember.

The good news is the high protein diet appears to have assisted in smoothing the weight loss and the fluid dump.  So far this week I've gone from 74 to 76 and now down to 72, which is pretty good for this time.  I've also only needed to get up a couple of times each night which should have helped with the fatigue but for some reason didn't, I'll ponder that one. 

It's a beautiful morning here today (see picture) and I am sitting outside in the backyard with the sun on my shoulder.  I think I need to get more exercise as the high protein,  high nutrition diet have just added fat.  I did some potting about yesterday, changing some pots in the garden and it felt good. 

So to leave on a positive note i'm going to sit here and enjoy the morning for a little while more and than maybe a bit more gardening.

Round 5 day 1

Here I go again.  Outside today is an awesome day, so clear you can see the Dandenong Ranges really well.  It is late afternoon in the photo.

Everything is tickety-boo according to Niall,  so no change to treatment. 

Not much else to report. 

Round 4 . End of week 3

Almost end of week 3 but things have been reasonably good this week.  For the second time this round I made it into work yesterday.  Not only that but I was feeling well enough to stay in town and everyone came into the RACV Club for dinner.  A really enjoyable meal and evening. 

We found a holder for my needle so that I could do it at the Club. So there I was in the car park, in the back seat of the car stabbing myself but no one noticed, so all is good. 

This means I am now officially through 50%. Round 5 starts Thursday. Not quite the home straight but it is in view now.

Round 4 day 14

I was feeling sufficiently good enough today to actually go to work at Docklands. Small achievement but the first time in nearly 7 weeks since I actually went in and not worked from home. 

I over did it a bit in the end and ended up with swollen legs.  Not badly but definitely more than I should have. 

I'm back home now with legs up but still pretty happy with the day. 

Sunday day 11

Donna has found a Cd and record market on at Essendon, I'm feeling good so off we go.  So much vinyl for sale.  So many obscure artists and albums.  Not a whole lot of anyone I know or are interested in.  We did buy a few despite this.

We spent a long time there and I ended up with a swollen leg but it was worth it.  If for no other reason than I got to go out. 

I am feeling better than last time at this point so I am hoping it continues. 

Round 4 - Days 2-7

As usual Friday was my best day and I met with Clare ( from work) for morning tea at Urban Grooves in Greensborough. As a complete surprise it turns out that one of the guys at work, Phil, has a daughter who works there and knows Clare. Amazing coincidence since I picked the place without knowing. Food was good and Clare and I had a good chat.

I went to my myotherapist Friday afternoon and discovered coconut oil is really good for the scalp and hair. My scalp and hair have been so dry especially during the fluid loss stages  Not peeling or flaking type dry but course and tough type dry. My skin goes like leather when I dry out but the coconut oil really works well. 

I probably did a little too much on Friday  as my calf was quite swollen Friday night. So the weekend came and went and we didn't do much. On Sunday I was feeling up to walking again so we went to the market. Not much swelling so hopefully things are looking up.

By Monday the neuropathy in my hands and feet was becoming noticeable . This is not good as usually it doesn't start until around day 7. Also my fluid flush appeared to be starting early, not sure what this means.

It's now Wednesday and I think I know what it means. It seems that its not as aggressive as previously but time will tell, certainly my feet are feeling it but not so much my hands. Being not as aggressive I suspect means that it will last longer, I sure hope not. I've discovered the coconut oil eases the neuropathy in my hands so now I am going to test it on my feet. I will keep you informed of its success or otherwise.

Round 4. Day 1

Here I am back at the oncology ward for the next round. Yesterday Niall was happy with progress and with the minimal side effects so we are progressing today as per schedule.  No change to dosage etc.  He tells me, quite confidently, that round 4 will not be like round 2 despite round 3 being similar to round 1. Here's hoping.

I got a corner chair today and a view.  Having said that it is a grey, wet and miserable day. It is still good to have the view. I can just see the top of the trains as they go. There won't be many laps of the ward today though thanks to the blood clots.  I've got to find a way to exercise at home without using my legs. 

Anyway today will be fairly peaceful.

This Week In Treatment

I thought this week was going to be ffairly usual stuff hence no posts. Instead I have a new challenge to write about.

To start on Tuesday I was feeling pretty good and my leg swelling had reduced so I figured I'd get in some exercise. Apparently not a good idea. Right calf ballooned and really hurt. I was still thinking at this stage it was muscular, it had been there with different severity for over 2 weeks.

It was still the same Thursday so I went to see the doctor. After a quick consultation and I had a letter to the emergency room at the Austin, so off we went. At the Austin, after nearly 5 hours, I was diagnosed with blood clots from near the top of my thigh to the back of my knee. Oh well at least it explains the pain, swelling and why it wouldn't go away. The next bit is the fun part. Due to my chemo I can't take usual tablets but have to have daily injections instead. I said to the doctor what are my options? Well you give them to yourself or you come hear everyday. So last night in the emergency ward I learnt how to give myself an infection. It isn't that hard as it turns out. You just have to get over the first thought of it. So now I get to give myself a daily injection for at least the next 3 to 6 months.

The doctor doing thought it funny that when he told me I responded that it was good and bad news. i explained, the bad that I had clots and the good that at least I now knew the problem and could something about it.  He just smiled and nodded. Nicholas thinks he will use that now with other patients.

Today was my second self inflicted injection. The pushing the needle in is painless but the medicine as it goes in stings. So be it.

Sunday (really Monday) Drive

On Monday I was feeling pretty good so we decided it was time for a drive.  So we headed off to Daylesford where we had a delightful morning tea in a little bakery in the main street. Not the big one that everyone goes to but a little one across the road.  I was still having some sensitivity with my eating so was looking for something softish.  We shared  an American brownie bar that was just right.  Highly recommend the place and their other pastries looked good. 

Then we decided to go to Hepburn Springs for lunch since my feet were still not really allowing my to walk far.  There isn't much at Hepburn Springs so we kept going to  Castlemaine where we went to lunch at the hotel we have liked before.  It has changed hands and looks like it had been pretty run down in between. The food wasn't bad although I found a bit of wire in the first meal I ordered.  They took it away and I ordered something else which turned out to be excellent,  better than my first choice. 

On the way home we stopped in at Lancefield at the bakery, another favorite.  Yes it was good.  Then home we went.  Another pleasant day. 

Round 3 hands & feet

My hands sre almost back to normal, just really fresh soft skin. 

However my feet are now my focus. They took longer to crack probably because they are thicker and the skin tougher. 

Round 3 - days 1-3

Chemo was pretty much as usual but a little shorter as they didn't use as much fluid to do the flush in the last 4 hours.

Friday I potted around the house and not as much side effects. So I decided to see if I could have a go at fishing but it all depended on my legs swelling or not. 
So I set myself up in the back of the car with my legs up for the trip down.  My legs weren't too bad so I went fishing.  We had a good time and caught some fish.  Now we just have to work out how to get them home. 

Weekend Festivals - Last Weekend

For the first time in nearly 4 weeks I left the house to go somewhere other than the doctors or hospital. There were a couple of festivals on in the city so we thought we would give them a go .

The first we want to was the Turkish festival held at the Vic markets. It was quite small with only a handful of tents and stalls, It was still something to see.
The pictures are of  the Turkish festival.

The other festival on was a Greek festival at the other end of the CBD. We get there at lunch time only to see them packing up. The funny thing was when we got home they were still advertising it on TV. Anyway we got home before my leg got too swollen.

ROUND 2 . Hands

This time round my hands and feet were quite badly inflamed and are still recovering. 9've kept a bit of a photo history of them.

The first is where they are red but not yet cracked or peeling. Then the cracking and peeling starts . The last you can see the skin has peeled off the fingertips and parts of the palm.

End Of Round 2

I met with Niall on Wed  and we decided to postpone this weeks treatment until next week . We will also reduce the Xeloda from 4 + 3 a day to 3 + 2 a day.  This will reduce some side effects particularly the hands & feet . This is important as it can cause permanent nerve damage as it has a cumulative  affect.

Now for the good news .  The CT scan results showed that a number of the lymph nodes which were previously  visible are no longer visible and the large mass in the stomach has markedly reduced.  Niall said that although he can't be certain that the herceptin has made the difference it is obvious that the combination is working. So it is worth paying for and I shall again this round.

Now to just get some level of fitness back before next week.

Have a great weekend.

Days 9 - 19 Round 2

Well it has been a while and it has been quite a period. Nothing has gone the same as last time. I have had almost every type of side effect you can get and the ones from last time were much stronger and lasted much longer.

I still lost heaps of fluid but instead of it all in one day it lasted about 7 days. This was followed by a weekend of diarrhea. So now I am at just 68kgs and feeling a little weak but as of today I actually feel like I am getting better. On top of all that my hands and feet became really inflamed to the point where it was quite difficult to walk. Quite stupidly I kept trying to work through last week. I was so exhausted at the end of each day I just didn't have the energy to do the blog.

Donna and I had a funny conversation on the weekend, it was around how when you are going through something like this all conversations seem to be about bodily functions. So let me just say last week was crap and I'll skip all the other things that happened. I had a CT last week that will tell if the Herceptin side of the treatment is doing what is supposed to and worth the money or not. I meet with Niall tomorrow as I am to have cycle 3 this week. I'm not sure if it will  happen though given I am still well below weight and not recovered yet. We'll see.

On to more enjoyable things. Nicholas has started Uni and is pleased with his subjects and days. He has Thursday and Friday off each week. And they call it full time!

BTW Thanks for the cards it is appreciated.

Days 5-8 Round 2

Ok, a lot has happened this week so I will try and summarise it.

Firstly, unlike the first round I was extremely tried early in the week. I took Monday as sick leave I was so exhausted. I was still swelling in the legs and by Monday night my hands and feet were bright red and very sore and again felt is if they were on fire.

On Tuesday I had already planned to work from home and felt better after the rest Monday so did that. Unlike last time I was exhausted by the end of the day. Wednesday I worked from home again  as my feet and hands were still really red and on fire. Unlike last time my face had also gone really red although not sore my like hands. Again I was spent by the end of the day and the fluid dump had begun I think sometime early Wed morning or late Tuesday night. I hadn't put on as much weight or swollen as badly as the first time so I thought it might be lighter this time.  Beginners mistake. This may be why I was so tired though.

Somewhere in the middle of Wednesday night I decided that not only was I taking Thursday off but also Friday to just rest and recoup. Strange how your thoughts sometimes can be very lucid despite feeling groggy and exhausted. Smart decision. AJ was good with that.

After resting all day yesterday this morning I feel better. Still not great but better. My hands etc have eased a lot. My face is very red though anoint appears the rash I had last time and thought was heat rash is coming back. I've noticed it early hopefully and have put the cream they gave me on it already.

I've bought some Gatorade to replace the fluid and electrolytes. I was using some stuff called Gastrolyte which tastes foul. The Gatorade is supposed to do a similar job and at least it tastes like something I can drink.

Anyway today I am looking forward to resting up and hopefully having  a good weekend. All the best to everyone and hopefully you won't hear from me until next week some time.

Days 2-4 Round 2

Day 2 ran pretty much the same as last time, meaning hiccups all day from breakfast to when I went to bed. Not a lot of fun and very tiring. The swelling in my legs started last night, so it came a day early. My guess is some sort of result of starting the Xeloda  a day earlier than last time. 

Day 3 and the fluid build up this time is a lot less. Due only gone up about 2 Kgs instead of the 4-5 of last time. I'm putting this down to starting the treatment well hydrated unlike the first time. I' m following the nurses advice of either keep the legs moving or keep them elevated. It all helps with the swelling. The blasted hiccups came back this afternoon something I could have done without. 

Day 4 and I'm starting to get quite tired. I don't know if it is as a result of the constant keep the leg moving or up routine but I want to nod off but can't sleep,

I must try and remember to get a photo of my arms to gm before the next round. I used the clippers to take the hair off  them  so that the nurses had a choice of arms and veins. Also to help with removing all the tape they use to stick the canula down.  Long hair and halo of sticky tape don't mix 

The FISH CAFE

In amongst the trips to hospital I managed to get in a very nice lunch at a place in Heidelberg called The FISH CAFE with Nicholas. It is a fish and burger shop that does great burgers. I had a burger with the lot and  Nicholas had a fish burger with a small chips. Both binges were really large and  tased great. The small chips were huge and could feed 4 people, great value at $3.50.

Day 1 Round 2

I feel a bit like a boxer starting this with round 2. Today I start round 2. Yesterday I met with Niall again and discussed round 1. He is a bit like a coach in that way. We go though what happened and what if anything we do different, which is nothing at this stage . My blood results from Monday were good and the fluid dump although unexpected could have been the result of a couple of things, so this time we wait and see if it is the  same or not. Same or different  might point to which is the right answer.

The burning feet, numb fingertips and the dry skin and cracked lips are all side affects of the XELODA. Unfortunatety for me Niall tells me to expect these to get worse this time. There is some sort of cumulative thing in the first 2-3 rounds that fades in the other rounds.

At this stage the rash is suspected of being just a heat rash.

I started today's treatment earlier and with lots of fluid before I got here so things are progressing quicker than last time and I expect to be out of here by 5pm instead of 6.

Lots of exercise for the next couple of days to try and get the fluid moving quicker and more evenly this time around.

Attached is a photo of the chain I get to sit in all day. They are large and comfortable and can be adjusted as needed'

Days 11-16

OK maybe just a little too optimistic last post.

After working out at the gym on Tuesday I ended up with an intense burning sensation on the soles of my feet. I thought that I had blistered the bottom of both feet. After waiting for a day no blisters but the sensation wouldn't go away. It made sleeping really difficult. Even when Donna felt my feet she said they were burning on the soles. It also made walking rather difficult.

Anyway by Friday the sensation was going away so I went to a work BBQ where I just sat in a chair so I wouldn't have to be on my feet. By Saturday my feet had eased off a lot but I had developed a rash on my chest and a little on my face. It was itchy on the chest but I noticed the moisturizer I used on my face eased the spots so I tried it on my chest and it certainly eased it but it  wouldn't go away. I rang the hospital after hours as per their instruction. They were happy that if I could control it and then see my GP it was probably a heat rash, which was what I said it was when I rang them. So I did.

Today, I went to the GP and yes it is a heat rash. I have some special ointment for it and now it has gone.
My feet have really eased off as I used a cross trainer tonight and so far so good.

Anyway next round starts on Thursday so if nothing happens between now and then I'll wait till the next post.

Days 9&10

Things are running well at the moment so unless something happens assume all is well.  I'll stop posting daily and only exceptions will be posted.

Day 7&8

Unlike yesterday's blog where I combined cause not much was happening, a lot happened yesterday and Wed night. Over about 15 hours all the fluid finally left. During that period I lost nearly 6 kilos  in weight. Let me say right now that by the time it stopped yesterday morning  I was completely worn out. I slept most of yesterday.

I made the mistake of trying to eat solid food straight away and caused myself severe intestinal pain. Definitely remember that for next time.

I'm still really tired today but went to work and made it through the whole day so I'm recovering.

Anyone with ideas on lessening the affects of massive sudden dehydration send me an email.

Day 5 & 6

Not much to report yesterday and today. Apart from the swollen legs and fluid retention not much in way of symptoms. This is really good news as I am told by the doctor that I am now probably past the vomiting stage for this round.

I've been at work both days albeit yesterday working from home and today at work for 1/5 the day. Until my legs grew and I went home to get them up in the air.

I'm getting some fluid tablets tomorrow so hopefully that will move it now the worst is past this week.

Chemo day 4

Super Bowl!
I've taken the day on annual leave to watch the Super Bowl like most years. A great game and really please to see Baltimore win despite them knocking out my team on the way through.

Side affects still are minimal although my legs did swell again despite me being on the cross trainer for almost the entire game 3 hours. So I've stuck my legs in the air for the night to see if it helps.

The doctor isn't too concerned if I can keep control of it myself. It might make working at work more of a challenge though. It many be half days at work and then home for the afternoon. I'll play it by ear for the moment.

Chemo Day 3

Well so far so good. Side affects have been minimal to date although as I have said before Tuesday is the day when I will really know.

We needed honey today so Donna drove her and I up to Healesville for the morning and to go to the markets there. We got some honey but could only get it in a litre so we'll probably be back next month.

I was still feeling quite bloated from Saturday's dinner of home made curry laksa and didn't even want morning tea, something most unusual for me, especially at Healesville where there is one of our favourite cafes. We had also noticed earlier that my legs had started swell. We walked around a little but then headed home. We couldn't stay out for lunch, not that I felt like it, as I have a tablet I have to take at lunch time and we didn't bring it.

After a very light lunch Marcus wanted to get some hours up on his learners so we drove over to Warrandyte where we had some afternoon tea in a very nice cafe that Donna had chosen. So my appetite was starting to return.

By early evening we noticed that I had developed cankles and really big calves and thighs. I made note of it in the daily diary they provided for me to keep track of things. I thought it was still probably fluid so I jumped on the cross trainer and just walked on it for about 1.5 hours. By the end my calves and ankles had decreased noticeably so I am less concerned but I will advise the doctors anyway on Monday.

My weight is doing all sorts of weird things. On Friday when I started it was 74 Kg, on Sat it was 73 Kg, this was after pumping me with about 6-7 litres of saline plus the drugs. Today it was 78 kg  5 Kg in a day!, I'm guessing all the fluid still needs to get out of me.

So apart from the never ending hiccups which seem to be ever present even when I am not hiccuping these are the only side affects I have noticed.

Chemo day 2

Well everything has gone well again today. No nausea, no vomiting, and no diarrhea. I've taken the first doses of the Xeloda chemo drug and obviously the anti-nausea drugs must be good. A grand total of 12 tablets a day, 7 of which are the Xeloda.

I've been keeping myself well hydrated meaning I am also spending a lot of time day and night in the toilet, yippee. I'm not complaining at that though as it means all the things they've given me have worked so far. I did test them pretty good for dinner tonight. I've been feeling so good I made Marcus and I a curry laksa for dinner as it was only us tonight, although Natalie is here but as she is a vegan she had toasted sangas.  So I'll see later tonight if the spices and chilies have any impact.

Apparently though day 4 is D-day as that is when I am weaned off/ cut off the anti nausea so I'll really know on Tuesday how I am. Might work from home on Tuesday, just in case.

So far so good but there is a long way to go.

View out window

Starting chemo today!

Today I start chemo at the Warringal Hospital: It still feels strange  being treated for a cancer I have no symptons for. Anyway I am getting .CX and an antibody called Herceptin. It starts though with  plenty of  ftuid (saline) being pumped into me and then the Chemo drugs and then some more  saline.

In the beginning along with the saline I am getting some (read lots) of anti-nausea drugs  One by mouth, called Emend, and 2 intravenously' DEXAMENTHASONL and NAVOBAN, each of these I have to take follow up pills for the next 2-3 days. I have then also another optional one which I can take,  more likely after the others have expired METOCLOPRAMIDE:

The saline is to make sure my kidneys keep functioning as the chemo affects them. Once the saline is pumped in I have to urinate enough so that they can then administer the chemo.

So I am sitting here at the hospital in a very comfy chair with a great view out the window and being looked after by Margaret who is very friendly and helpful

All the staff here are good and very friendly. They keep wanting to close the blinds but I like it bright so I keep saying no.

The Heceptin is going in now and as it is the first dose it is a large dose, today takes 1 1/2 hours, the next dose in 3 weeks takes 1 hour and then each after that only 1/2 hour each time. It was about 11.05 when it started. Atl the drugs start with A load dose and then reduce for the rest.

Finally it is all over and it is now 5:45 PM and I have been plugged in since 9Am. The chemo drugs stopped around 2pm and then the next round of saline. So far I have had little  to no reaction  to any of the drugs. I had a slight reaction  to one drug which was a pain in the arm around the cannula. Margaret said it probably wasn't the drug itself but more likely that it was the cold of the drug and the speed it was going in. She adjusted it a bit and also gave me  a heat pad fathe arm. this did the trick and I was good in no time.  Obviously the anti-nausea drugs are working.

Originally I was to be an overnight stay but they changed it to a day procedure as there were no staff available. The place is that new. What it did mean though is  they cut short the end saline only till ~6pm, 4 hours not 6. So I have to make sure I continue the hydration tonight to keep my kidneys working.

Lets hope the rest of the treatment goes this well.

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.