I have written a couple of notes/thoughts in the last few months however have not posted them up as I had to get comfortable talking about some stuff. Knowing me, I will probably overshare later in the name of science and education but today is more of a catch-up on where I am up to on the new drugs which are called TKI’s. 

Neck Update

As you can see in the latest photo, my neck is back to normal so I look as normal as I can – we all know that I am not normal, but on the outside I look like most other people. And here comes the ramble, as it is not what is on the outside that matters!!

The New Normal

I have had a bit of a rough time in the past few months as I learn the side effects of my new drugs which are tyrosine kinase inhibitor (TKI) and weird things that may not be due to the drugs but just coz, who knows. 
The drug themselves are all good, I take 4 easy to swallow capsules with breakfast and 4 at dinner.

The particular drugs I take are called Alectinib and their job is to simply block the ALK+ cells from replicating and being immortal. They do not stop the mutation occurring, so it is not a cure, just keeps them at bay until my body thinks this TKI shouldn’t be in my body and I build a resistance to it (here is hoping my body is a bit lazy in working out a resistance). When that happens we move TKI’s depending on the mutation.

I will find out next month if they are doing the job, as I will have a PET/CT and Brain MRI and it should not light up with cancer cells.  So we have the usual waiting game to see if we are winning. 

Side Effects

Now for the side effects of the TKI’s that seem to be hitting me.

Taste Change

So citrus, apple, pineapple, berries and other various random stuff tastes horrible (think metallic/20 day old rancid pineapple aftertaste). Wine did start out this way but seems ok now (however I do get the nasty taste on some of the more fruity ones).  So you might think that’s not too bad – well that means no mojitos, pimms cups or other great summer drinks, nearly all soft drinks are out (lemonade, Fanta, solo, juice and even coke etc). So coffee, wine, gin and beer it is.

Random Muscle Pain

So far not so bad, right, well that’s probably the least impact on life – the next one is random muscle pain, just weird stuff that hurts, my sternum and left breast nipple hurts most of the time, the rest of the body randomly feels like you have the flu without the fever and sniffles so just a bit crap. 

Fatigue

Hmm depression or fatigue? Well a three week escape in a motorhome around Tassie during the last school holidays with the Mad Scientist and the cheeky monkeys and the verdict is….. fatigue. I wake up tired, my body has had it by early afternoon, to the point I am mentally and physically wrecked.

This can be resolved by a nap around lunch and I can then push it out in the evening for a later night. I can manage missing a nap a day here and there however have learnt that this will come back and bite me. Or I bite the heads off the Mad Scientist and the monkeys – so that is not cool. I am trying to build up my stamina so I can handle this better.

 The Gut

The old gut issues are back, needing to eat lots of fruit to make it work properly – ohh wait I can’t coz fruit tastes like crap – so have worked out that dates are good, all other dried fruit seems to taste terrible – so a manageable side effect but just another “ohh great” and going through bags of dates. 

Sun Sensitivity

I am now officially sun sensitive, my arms (probably due to the hairy monkey arms I have) seem to be able to cope better than the rest of me , but ten minutes in the midday sun and I am red and will feel hot/sunburnt for days. This is particularly true for the top of my feet so thongs (flip flops for the English, not the other type) are out and jeans and sneakers are in.

If only I didn’t live in a nice sunny place that has great beaches/pools/parks etc!! 

Weight Gain

Is this a side effect or am I still trying to lose weight from the Dex days I hear you ask. Either way I have given in (a big mental thing here) and purchased new jeans, the next size up, as I can not move or do up most of my old jeans!!

This has not occurred for years – many years – pre children!! Not accepting defeat on this yet, just making it that I can walk around with my jeans done up. That should stop me being arrested for indecent exposure when I go out.

Breathless but only when….

The last one is probably the weird one but most visible if you go somewhere with me. I am out of breath, but not all the time. In my best scientific methods (so I just did it a few times and went – yep that seems to be it) I have discovered I can walk on the flat at a medium pace and I look like the next person. However put a slight incline into that road/path/car park and you will see a huffin puffin guy that looks like he will drop dead any second while sucking in the big air.

This is the one for me that pulls on the heart strings as I see my kids look at me worried as I ask them to slow down as I can’t keep up a simple pace walking to/from school (ok so I live on a hill)!

Here endith

Well that is my update. No really big lessons here or great insights. No stories of strange characters but an update. Maybe my next ramble will have more fun stories and characters and be more ramble like.