Sunitinib.

3 Mar

Right, here we go, I might not talk for long because I think my neck is starting to hurt..I’m not sure. I have a pain specialist coming tomorrow though so hopefully he can sort out something for me so I won’t be complaining all the time ;).

So yesterday morning dad and I leave the house at 7:30 and get to Birmingham QE for a CT scan at 9 (I’m the one being scanned..not dad..obviously) so I’m still feeling a bit rough as I was sickly the day before and I’m not allowed to eat or drink anything before it so they sit me down and I have to drink a litre of dye over an hour. This dye tastes like aniseed..I don’t like aniseed..but I’m used to it as I’ve had like 20 scans. Bear in mind, also, that my bowels aren’t back to normal yet so I’m not really comfortable being out and about (lush). So I drink the dye, get changed into a gown, am taken through to the CT scanner – OH! I forgot to say before I started that it’s Calum’s birthday today AND Alistair’s (my uncle) AND my friend Corrine’s so Happy Birthday to all of them! – then they lie me down on the table and take 3 attempts to get a needle in – damn my veins. Do the scan and then dad and I have to wait till 2 for Dr Mangat (who is the guy who did my TACE’s and my ablation) to interpret the scan and go to clinic. Ha, side note, whilst I was on the CT scanner table the lady asked me if I had lost lots of weight……..do I look like I used to be fat?! Weird.

So it was about 11 and dad and I went for a slow walk around the Bull Ring and bought some CDs and had a starbucks hot chocolate. Remember that I’ve only been out of hospital, after a major internal bleed, for 2 weeks so I was EXHAUSTED. I could have sat in a corner and slept.

So anyway we got back to hospital and checked into clinic to see Dan at about 1pm but then didn’t get to see him till 4 :O. Long day of waiting I KNOW! We did, however, see Rebekah – who has the same cancer as me – and it was nice to know she is still alive.

So yeah.. We see Dan.

Results:

The tumours on my liver are stable. Great!

The tumours on my lungs have grown a bit..and there are now also potential growths on the fatty tissue in my stomach. :/. This meant that I was sent home with Sunitinib, which is like the cancer suppression drug Sorafenib which I took before, but the chemical structure is slightly different so they are hoping that I won’t have such a reaction to this one. I’m nervous to take these drugs because of the horrible side effects I had before..well I’m pretty much worried to take any drug now because I have no idea what will happen. I wish they could do more surgery and just take out the tumours altogether but they are too small and there is too many that it wouldn’t be a good idea as I would have to recover from the surgery and it is likely that something would be left behind.

I don’t know how long they can keep me on these pills but I think it’ll be a while. I can’t have a baby whilst I’m on them either..but obviously I don’t want one any time soon! They said they can’t keep me on them forever because they stop working after a while but there is still options at that point (or if I react).

Honestly, I think my life expectancy is to late 30s/early 40s. That’s what I honestly think – I’m not sad about it but I do feel that this recent hospital stint with all the bleeding has got to me a bit. It’s just not really fair that I’m losing my time because I’m literally not strong enough to go on a walk up a hill or something and everyone else is out there doing things. What really annoys me though, is that there are people all over my facebook laughing about how much they drank last night or complaining they’ve run out of cigarettes. I would give anything to have a body that wasn’t slowly being destroyed but they’re actually choosing to do it to themselves?

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11 Responses to “Sunitinib.”

  1. Alison March 3, 2011 at 4:51 pm #

    Well, good news and bad news in there but as always you are positive about it and come out fighting. I hope the drugs agree with you and in particular the pain management person finds the right mix to enable you to feel better day to day.

    You are bound to feel down after being so poorly with the bleeding so don’t beat yourself up, take it day by day and spend a little longer each day doing things until you have built your strength up a bit.

    Although nowhere near in your league, I have had a chest infection all week and never felt so weak and poorly, so I have a little inkling of you how are feeling especially with the sun shining!

    Best wishes.

    Ali xx

  2. celia butler March 3, 2011 at 5:07 pm #

    Serious stuff Rosie but very good news on the liver front. Hope very much that you’re okay with the new meds, you don’t need any more adverse reactions right now. Three wishes then – that you’re okay on the Sunitinib, that you feel a bit less exhausted very soon (but it’s still very early days given the battering you’ve taken over recent weeks), and that your less mature Facebook friends read your blog and learn something. And birthday greetings to Calum. x

  3. Trudy Robertson March 3, 2011 at 5:59 pm #

    First Happy Birthday Calum,Hope you are feeling better.Rosie sounds like you have not eaten very much.only a hot choc on scan day, that won’t help get your strength up,and not eating all the time you were in hospital.Hopefully the pain doc will sort you out,thats getting you down, so all in all I think you are doing great.just take you time Rosie.
    Trudy.

  4. margaret crisp March 3, 2011 at 6:16 pm #

    Hi Rosie, as Celia says, good news on the liver front and hopefully the drugs will agree with you and work on the stomach and lungs. You sound just as impatient as I am sometimes, but I am afraid you may just have to take the time to rest and recover your strength. Perhaps lucozade would help your energy levels?
    love mags.

  5. Kath March 3, 2011 at 8:05 pm #

    Sounds like a good subject for a column to me…

    Sorry the scan results weren’t entirely brilliant. Hoping the new drugs do their stuff well.

  6. Pip Armstrong March 3, 2011 at 10:10 pm #

    Hope the Sutent does the trick, I’ve heard they’ve had really good results with it, I’m sure you are nervous about taking new drugs after the trauma you’ve been through you poor thing, everybody’s thinking about you and wishing you well, don’t forget that.
    Loooove your comment on Facebook, a very powerful and thought provoking message for young people – I can just see it on a poster with a photo of you slapped up on the wall of the medical centre in every college and university in the land, you should contact The Health Education Council and ask if they’re interested and that’s not a joke I’m being very serious x

  7. Pip Armstrong March 3, 2011 at 10:12 pm #

    PS Happy birthday Calum x

  8. Jan - Bristol March 3, 2011 at 10:36 pm #

    Hi Rosie 🙂 virtual hugs 🙂
    I agree with Pip. Your comment about Facebook or ‘off your face book’ as it is known amongst my friends, is so true. I am very lucky in both my girls aren’t sheep, following the crowd – but I know they find it very hard with peer pressure etc. Do me a favour when you’re up to it and write a piece I can put on my facebook…… (i’m only on it to stalk my kids!!! 🙂 ) and maybe someone may take notice.
    Happy thought for the day… Pancake Day soon 🙂 closely followed by lots of Easter eggs/chocolate animals 🙂 yum

  9. Robin March 4, 2011 at 11:48 am #

    Hey Rosie, what on earth are you up to ey? Im really sad its not going well for you lately, I hope the pain specialist can work some miracles for you today and you get some respite from all of this now.

    I dont understand facebook and why people need to share every slice of their lifes details, regardless of what it is they are talking about. Try not to get annoyed by what they are doing willingly to themselves when you have no choice. The way you put it into words is indeed thought provoking and I can understand how wrong and unfair that must seem to you, but they are only being young and stupid. In different circumstances, and if you hadn’t had to grow up so fast and realise how precious life was 30 years or so earlier than most, it could even have been you doing these things, although I believe that you would of had more class than to splash it all over facebook!

    You alreay are once again finding positives in unbelievably difficult times which is why I admire you more and more each day, you are my hero Rosie, please get well again.

    XX

  10. jill Clayton March 4, 2011 at 3:05 pm #

    You’ve achieved more in your 19 years – so far – than most of us do in 70. I look forward to seeing go from strength to strength! Love, Jill

  11. dee March 5, 2011 at 6:37 pm #

    Just thinking of you and thinking you have had 100% thrown at you physically, mentally and emotionally the last couple of weeks. Just sending love x

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