Tarceva 100 mg Day 48

I've been a litle breathless this week and coughed up some blood yesterday for the first time in months.
My Mcmillan nurse tells me this is normal given my current condition.

Apart from a little redness on my nose and forehead I still do not have a rash or any itching.

Swine Flu

As one of those considered to be in the "high risk" category I received a call from my G.P's receptionist this week offering me the swine flu jab.
I declined.

The only benefit of the swine flu jab is in the profits made by the drug companies who have already made a fortune from it.
The danger has been grossly exaggerated and the drugs have not been sufficiently tested.
I'll take my chances.

Meanwhile, other than a couple of spots, there is no change to my condition since the last post.
If anything it's improved.
I'm now able to perform basic DIY tasks which I would have found impossible a few weeks ago.

(UPDATE ADDED 4/12/2009)
Since I made the post regarding Swine Flu I have done some more research.
What I found out is pretty shocking.

SWINE FLU UPDATE

..

Tarceva 100 mg Day 19

Still no sign of a rash and breathing good.

Tarceva 100 mg Day 12

I'm happy to say there is still no sign of a rash and my breathing has improved.
Feeling pretty close to normal although I won't be entering any marathons in the near future.

Tarceva 100mg Day 9

Still no sign of a rash and still feeling pretty good.
This is just as well as my partner, Angie, is going into hospital today for an operation on her shoulder.
So this week I'll be playing nurse and Angie can put her feet up for a change.
The good news is she's going to be off work for weeks so we'll be able to spend a lot more time together.

New Tarceva Course - Day 8

On day 8 of the 150 mg course I broke out in a rash.
So far I have no sign of a rash this time and it's Day 8 of the 100 mg course.
Feeling pretty good at the moment, no cough and breathing not too bad.
Got my appetite back thanks to the steroids, taking 2 mg a day.
They also give me a little more energy than I'd have without them.
Also taking 20 mg of morphine a day.

Tarceva

My consultant didn't start me on the lower dose of Tarceva last week as expected.
He wanted to wait a few days for the rash to completely disappear and then arranged more blood tests.

I started the new course of 100 mg yesterday (Sunday).

This week I have been feeling pretty good, I'm back on steroids which I'm sure is the reason why.
They do help.

I'm only taking 2 mg of steroids daily but I have more energy than usual and went to the pub yesterday for the first time in weeks.

Tarceva

The doc is putting me back on Tarceva but at a lower dose.(100 mg)
I'll be starting the new course today and it takes around 8-10 days for the rash to start to appear.
Hopefully it won't be so bad this time.

I've tried to stay positive throughout the past few months but it really hit home this week that my time is running out.
You can't fight the ineveitable and I have to accept now that my time has come.

Mcmillan Nurses

I really can't praise these girls enough.
I had my first home visit from a Mcmillan Nurse on Monday and I warmed to her straight away.
These girls really do go the extra mile.
They don't just come round, administer treatment then leave.
They help with all manner of problems, even which benefits I should be claiming.
They are genuinely caring and it's just reassuring to know they are there 24 hours a day.

Getting back to my condition, following some really bad side effects from the new drug I'm taking I was told to stop taking it last week.
The drug is Tarceva and it is very new and relatively untested.
The main side effect is a rash which in my case became so bad my head felt like it was running alive with nits.
And my face was such a mess a parcel delivery man was clearly shocked when I opened the door to him last week.
I could read his thoughts "Jeez, what has this guy got?"

So what happens now?

I'm seeing Dr Taylor at Medway Oncology tomorrow afternoon to discuss the next step.

Terminally Ill

Following a chat with my Mcmillan Nurse this week it is now clear that I am considered "Terminally Ill"
The official prognosis is six months.
While I hope to prove them wrong I have to admit I'm feeling very unwell at the time of writing.

Bad News

On Friday 11th September I got some really bad news.
There is cancerous tissue in my right lung so I have to go back on chemo.

I beat the Big C

On Tuesday 30th June 2009 at 2.20 PM I got the news I've waited over 6 months to hear.

The tumour has gone!!!!!!!!!!!!!

Day 99

A disappointing day.

Saw the surgeon at Maidstone hospital but because of continued side effects plus the diabetes and high chloestorol problems I can't have a scan yet.
It will be another two months before I see the surgeon again so won't have any real news until then.
But the general feeling is that the treatment has worked, my breathing is much better than it was.
The question now is has the tumour gone or has it just shrunk a little?

Day 94

Saw my GP yesterday and got the news I was expecting.
I've got diabetes and my cholesterol is dangerously high.
So I have to take more drugs to control the diabetes and get the cholesterol down.
And I have to stick to a strict diet from now on.

Seeing the surgeon on Wednesday next and I'm praying it's going to be good news.

At leat I'm able to get around better now and I hope to start leading a normal life again soon.

It's over 4 months since I was able to leave the house other than for trips to the hospital or for a quick pint on the odd days I was able to take a walk.

Day 92

Feeling a little better today.
Spent the morning polishing my bike ready to take it for an MOT when I feel well enough.
Spent the afternoon tanning myself in the garden.

Was finally able to make the trip to hospital yesterday for the blood tests and should have the results by Friday.

On Wedsnesday next I go to see the surgeon at Maidstone.

Day 89

Still very tired and nauseous and haven't been well enough to go to the hospital for tests.
I spoke to the Radio Therapy nurse at Maidstone who explained this is normal after Radio Therapy and it usually takes around three weeks for the symptoms to fade.
So I'm hoping to see an improvement over the next few days.

My feet are no longer swollen but my vision is still very blurred.

The ulcers in my mouth, which I've had since the start of chemo, suddenly cleared overnight so I'm able to eat hot curries for the first time in weeks.

My breathing is still good so once the side effects wear off I expect to start leading a normal life again.

Day 78

2 days after my last post I picked up a very nasty virus and for the fist time since I started treatment I was forced to spend a couple of days in bed.
The chest infection has cleared but I'm still suffering from fatigue and this has ben constant since my last post.
I completed the Radio Therapy on Tuesday, a couple of days late due to the virus.
Other than extreme fatigue I haven't suffered any of the expected side effects from the Radio Therapy. (Sore throat, sensitive skin).

The blurred vision and swollen feet could be due to a diabetic problem, I have to go for blood tests when I'm able to make the trip to the local hospital.
My cholesterol is also likely to be high due to my increased appetite.

I'm decreasing my dosage of steroids slowly and will finally be off them completely by the end of next week.
Then, hopefully, my body should start to return to normal and I hope to start feeling better.

Day 66

This has been the worst period since I started treatment.
On Thursday my feet swelled up like a couple of balloons and were very painful.
My eyes were blurred and I couldn't read the number plate on our car outside.
If that wasn't enough I've also got a chest infection.
Added to the constant tiredness and fatigue this has made life really tough this past couple of weeks.

I was hoping that I'd have a few good days after completing the chemo before I started Radiation Therapy.
This is clearly not gonna happen as I start Radiation Therapy on Monday.
All I can hope is that the side effects of the Radiation Therapy are not too severe.

Day 59

This week has been the worst since I started taking the chemo.
I have heard from others that the third course is tough.
So I really feel for anybody who has to endure more than three courses of chemo.

I am tired constantly, unable to do much more than make a cup of tea or prepare a very simple meal.
I can't even manage the short stroll to the corner shop to get a paper.
One day my legs feel like they're made of lead, the next they turn to jelly.

It's very frustrating because my breathing has improved immensely and if it wasn't for the effects of the chemo I'm sure I'd be out now taking advantage of the excellent weather were experiencing.
I've been able to sit in the garden almost every day this week for a few hours which is good but I'd like to be out on my bike or visiting the pub.

Today is another glorious day weather wise so I'm off to sit in the sun.

Day 53

Another two bloody awful days.
For the first time since I started the course I've experienced dizziness and nausea along with the fatigue.
I slept virtually the whole day yesterday and today looks like being the same.

Since I started the course I've had around 8 good days where I've been able to function normally.
Unfortunately 4 of these were spent at the hospital so I wasn't able to make the most of them.

I'm really looking forward to next week when the chemo should start to wear off and I can go to the pub and have a pint or two.
Although I've read that chemo can take weeks or in some rare cases even months to leave your system completely.

I started this blog for two reasons, firstly to keep track of my own progress so that I could plan my days in advance of each course.
Unfortunately chemo doesn't follow a distinct pattern and you have to just take each day as it comes.

The other reason is to give those who will be taking chemo themselves an idea of what to expect and a little advice on how to deal with it.
Obviously though, people are different, and some will probably have a worse time than I did.
Apart from the tiredness I haven't suffered too much but even so it hasn't been a pleasant two months.

Day 51

Still constantly tired, every day really is like Groundhog Day.
Not able to do anything but sit in front of the TV.
This is Day 12 of the last course so I expect to show some improvement around Monday or Tuesday as the chemo starts to wear off and my white platelets get back to normal.

On Monday I start to gradually reduce my steroid dosage and will be off steroids completely at the same time I complete my Radio Therapy.

Day 47

Today I take my final dose of chemo at home in tablet form.

This week has been a little tough, I've felt very tired every day so far.
And I haven't reached the lowest point yet which should be around the weekend.
Then I have a short break before my CT scan on 23rd March.
Then another break until 30th when I start Radio Therapy.

It's now been confirmed that this will be five consecutive days at Maidstone Oncology.
Each session only last around 15 minutes but because I rely on hospital transport it's likely to take up around 4 hours of my time each day.

Day 44

Started my final course of chemo on Monday.
Tiredness set in the next day and I've had three bad days so far.
Haven't been able to do much at all.
Just making a cup of tea is hard work.

I take my final dose of chemo at home next Monday and then it's time for a CT scan to see the results.

Day 35

Saw the doc yesterday and he confirmed that all seems to be going well.
I've got one more course of chemo starting on Monday.

This will be followed by a CT scan.

If this confirms tumour has shrunk Radio Therapy will start on 23rd March.

Although they had planned two or three weeks of Radio Therapy this has now been reduced to just one week.

Took a walk to the pub yesterday and found I can now manage a normal pace.

Feeling good except for the occasional tiredness which is normal when on chemo.

Day 33

No problems at all the past few days.
Feeling almost normal and able to jog up the stairs.
Not bad for an old guy of 56 with a lung tumour.
Bit of a cough but that's to be expected as the tumour shrinks which it clearly has.
Seeing my surgeon on Tuesday and I'm certain i'm going to get some good news when he examines me.

My advice to anybody who suffers fatigue while on chemo is to force yourself out of bed, take a luke warm or even cold bath and get dressed.
You'll feel better.
Despite the fatigue I have not spent one day in bed throughout my treatment.

I have allowed access to a lot of free downloads from my website which you might also find helpful, they've certainly helped me.
Part of the battle in beating cancer is remaining positive, once you start thinking negatively your body stops fighting.
Self hypnosis could help you, unfortunately it's well known that not everybody is responsive to it.
But when you're fighting such an awful disease anything is worth trying.

Jusat click the link below to go to the website, click through the various links and look for free downloads, there are a lot ranging from self hypnosis to relaxation recordings.

Free Downloads

I've finished my second course now and I have a few days off before I start what I hope will be my final course of chemo.
If all goes well I'll be starting radiation therapy soon after.

Day 30

I expected to hit rock bottom today as it's Day 11 of the second course.
But I'm happy to say I've had three good days on the trot.
Took a trip to Maidstone yesterday and didn't sleep at all.
Today has been good so far.

My breathing continues to improve and I'm managing to do more each day.
Feeling very positive.

Day 25

Each day now is starting to feel like Groundhog Day, funny enough that's the film we watched last night.
Getting up around 7 am each morning not feeling too bad, just a little tired.

Start to feel very tired around lunchtime each day.
Have a doze on the sofa for around an hour and this keeps me going until around 7pm when I sleep for another hour or so, then watch TV until bed time.

Day 23

I didn't make it to the hospital on Monday.
Somebody forgot to organise transport.
So I had to go on Tuesday for the next course of chemo.

When I took the first course I was OK for the first few days but this time the fatigue kicked in within a couple of hours.
And so far it's lasted three days.
I guess that's because I've already got it in my system.

I've found a luke warm bath helps and getting up and getting dressed rather than just lay in bed is my way of dealing with it.
I try to find myself things to do even if it's just working on my website, anything to keep occupied.

Breathing continues to improve and if not for the chemo I think I'd be feeling really good now.
Only a few more weeks to go, then a break before I start radiation therapy.
Hopefully then I'll be able to take my bike out for a ride, that always gives me a lift.

Day 20

Had a good weekend, feeling better each day.
Able to walk to the pub without efffort, before Xmas I couldn't walk a few yards without taking a breather.

Felt a little tired Sunday afternoon but fine otherwise.

Day 18

Another good day.

I'm able to walk up the stairs without a struggle for the first time in months.
So obviously the chemo is doing it's job.
Feeling good apart from weakness in the legs, not sure why that is.
I start my next course of chemo on Monday so will discuss it with the nurse.

Angie happy cos I was able to help her with the shopping for the first time in weeks.

Feeling very positive.

Day 17

I woke up feeling good.

Went to Maidstone Hospital for a check up on my progress.
The nurse felt they might need to reduce the dosage of chemo slightly as the fatigue is getting me down.
Will wait and see what the reaction is to the next course which starts on Monday.
Found I'd put on 8 Kilos in weight which was a bit of a shock.
Need to be careful what I eat so the choccy bars are out for a while.

Had to wait almost three hours for tansport home which really pissed me off.
My appointment only lasted 15 minutes but took up 6 hours of my day.

Day 16

It's Day 16 and I'm feeling well enough to go out after days of being stuck indoors.
It's a bright sunny day although bitterly cold.
I've got 5 days grace before I visit Maidstone for my next dose of chemo so I intend to make the most of it.
Starting with a visit to the local watering hole for a much needed pint of light and bitter.

Starting Chemo

The first session of chemo was at Maidstone Hospital on 19th January 09.
For the first three days I had no noticeable effects, although I did have some reaction to the steroids which you take while on chemo.
I was waking at 4 in the morning and I had one hell of an appetite, still do.

For the first few days I was eating a huge fried breakfast every morning. I realised I couldn't keep doing that, no point defeating cancer only to die of a massive heart attack.
So I now have one big blowout on Sundays and stick to cereal the rest of the week.

On Day 4 the chemo started to kick in, I started to feel extremely tired from lunchtime onwards and this continued for the rest of the week.
I got ulcers in my mouth and my lips were very sore.

On Day 7 I took my second dose of chemo at home in tablet form.

On Day 10 I started to really feel the side effects associated with chemo.
This is when resistance to infection is at its lowest level.
My legs felt like lead and I felt like I'd just run a marathon.
I was unable to do much, just getting dressed was a major effort.
This lasted for the next few days until Day 15 when I started to feel normal again.

My Worst Nightmare

I discovered about two weeks before Xmas 2008 that I have a lung tumour.
To be given this news at any time would be a hard pill to swallow but to be told while planning a big family get together was devastating.

Worst news was yet to come as if it could get any worse.
The tumour is in the tube at the entrance to the lung so surgery is out of the question.
The only options available are a combination of Chemotherapy followed by Radiation Therapy.
As it was so close to Xmas my treatment won't start until the New Year.

After recovering from the initial shock we were faced with a dilemma.
Do we tell the family or do we try to hide it from them until after Xmas?
My partner made the decision for us, she was too upset to keep it hidden and it didn't take long for our daughter to figure something was seriously wrong.
So we made the decision to tell the family.

Although Xmas could easily have become a pretty morbid affair this wasn't the case.
We put my illness to the back of our minds and for the sake of the grand children we made it a Xmas holiday to remember.

Unfortunately Xmas didn't last forever and once New Years Eve was passed it was time to face reality.
I started chemo in January.