Steroids Revisited

This one is an odd one. When everything started and all manner of drugs were being prescribed to me, one of them was dexamethasone - a steroid. This was to help reduce the swelling around the tumour, and was one of the medications I successfully weaned myself from. 

But then chemo #2 started and for the first time I vomited - so I contacted my team who put me back on the dex at the high dose as well as a few others.

NOW. The thing is - the first time I took dex my legs became like lead weights. I could barely walk upstairs - every night was a real effort, though it helped me be tired. I weaned off the tablets and my legs went straight back to normal. Then I started taking the tablets again - but this time my legs are unaffected - there's no additional issues at all. 

(I find stuff like this quite interesting)

It feels like some weird lottery where I don't know what's going to happen other than something *probably will*.... 

(this also takes me back to the phone conversation about chemo where I was told 'no hair loss' 'some hair loss' and 'total hair loss' by different people on the team - and it was in fact 'no hair loss' which won, as radiotherapy was the hair removing treatment I had)

So I'm waiting wondering if my legs will start doing that again, hopeful it won't be the case as it should have happened by now.... 

Spoke Too Soon

Last night I was awake until gone 2am as guess what? My skin was really itchy - all over. 

I am putting it down to taking a drowsy antihistamine too late in the day. Or just sleeping too long the previous day. This might not be helped by me sleeping until gone 10am today. I was tired! 

Rashly, Flakily

Oh. Interesting. I forgot my evening antihistamine last night - the only one I take these days.

This morning I had no flaky skin. No "hello, I am a rash" on my skin. 

Which is quite interesting. 

Side Effects Check In

I guess a check-in is due on this - though it's better news than previous updates. 

Hairloss. Still losing hair though it feels like it's slowing down. Previously in the shower I'd have quite large amounts of hair fall out whenever I wash my hair, whereas these days it's a much smaller amount. My hairline is about 2cm higher, you can't see the scar from my craniotomy unless you look really hard so it all looks vaguely normal - though my hair is much thinner everywhere - especially underneath where I have the smallest of ponytails thanks to the lack of hair there these days. 

The rash. That has gone now - though I'm still taking a sleepy antihistamine at bedtime so I fall asleep quickly - and a bit of a rash appears then but disappears quickly (like it's reminding me that it hasn't quite gone yet). Nothing some aloe vera/good moisturiser doesn't fix anyway. 

Dry skin. Where it was just around small areas it's now around my body - but no irritation, I'm just making sure to drink lots of water and put lots of decent moisturiser on the area which seems to help. It's very dry, flaky skin which is a bit like dandruff, there isn't a huge amount of it but enough you notice it. One to keep an eye on.... 

Platelet levels. I've gone on about this one over the last couple of posts on here, but they're low and I'm wondering how low they're allowed to go once they're high enough to commence phase 3 of treatment. 

I think that's it right now - I'm almost a month since my last Radiotherapy appointment (how did that happen?!) so it's a good indication how I'll deal with the next phase. Whenever that starts... 

Platelet Levels

Okay, so here's my next question. I've been thinking about it way too much.

As I've gone on about for the last few weeks, hospital got concerned about my platelet levels and I was taken off chemo a week early. That was okay as I benefitted from the time I was taking it. All I had to do was get my levels up again and hope the evil rash would go away sharpish.

Alas, the rash loves sticking around and does still make an appearance (it's easy enough to make it go though), and I'm still taking antihistamines last thing at night to help me sleep and to help the rash disappear (it's probably the former than the latter here though). 

SO. If my platelet levels raise high enough that it's fine to start phase 3 with the chemo, that's a good thing. However, if being on the same chemo then lowers my platelet levels (and I should add here, I'm being put onto a low dose to see how I go with it before it gets to the more powerful one), what happens next? Because if my levels were low and only just recovered I feel like they're likely to go low again rather than keep raising.

Unless it's the antibiotics I've been allergic to all this time. But I don't know that because nobody tested at the time. Sigh. And I didn't ask because I didn't think about it. 

So this is why I've been thinking about it way too much. Will I start and then it doesn't work out so we go onto a different plan? Does anyone actually know? 

Antihistamine Reduction

I've reduced my antihistamine tablets to one per day (in the evening) and things seem to be okay 

I still get a rash on my legs though it disappears quickly (especially in the bath) - so I'm not too worried.

One of my other issues is my low platelet score. Now I have my scores I can see how much they dropped by. I can also see a huge great whopping bruise on my arm where a cannula was fitted yesterday. 

And I can't help wondering if that might delay things. Or then again it might not.