Back at The Christie

Looking forward to my appointment today and hearing what impact the cabergoline has been having on my bloods.

Hoping to hear that things are heading in the right way and have a sneaky feeling that the cabergoline is doing its business!

You may remember that I recently reported feeling much better, well it was short-lived as the “heavy head” sensations came back last Thursday.

Albeit not as bad as the week before, today I have a fuzzy head with a light headache. Think of a sponge sodden with water that best describes the feeling in my head :(

Will let you know how I get on today ….

4 Comments

  1. Great visit at The Christie yesterday!

    Sadly the cabergoline hasn’t had enough of an impact this last five weeks and my IGF1 had hardly come down. Prolactin did come down and testosterone had gone up slightly but not enough to carry on taking cabergoline. Not an issue though. Worked out well as the Salford Royal neurosurgeon Mr G had spoken to Prof last week and asked him to stop the cabergoline as it can make the outer of the tumour fibrous. Hence no more cabergoline :)

    With that in mind they started me yesterday on injections of octreotide that I give myself 2-3 times a day. This is to try and control the Acromegaly and bring down the IGF1 level which amongst other things is the hormone that has caused my jaw to grow.

    Originally they did say that they wouldn’t treat the acro post surgery.

    Yesterday Dr C and the Prof said that the Cabergoline hadn’t been massively effective and they also didn’t want the acro to get any worse, hence the injections.

    We also discussed the psychology impact of the acro too. Oh and i felt that the acro may be getting a hold as last week i started getting lower back ache.

    So far limited discomfort with the first injection at 4.30pm yesterday. Just a little internal bruising on tummy, wind and a stitch. Couldn’t sleep either hence I’ve been up since 3am :(

    Whilst you are reading, I wanted to mention Dr C who i saw again today alongside Prof. Dr C is really understanding and has a great manner about her. Really impressed and albeit i have no favourites, i was overwhelmed by her endo knowledge. This Dr is younger than me but she’s clearly worked really hard to get where she is :) Well done Dr C!

    Also a mention to Dr K who in passing had a chat with me at the water fountain. She was genuinely interested in how i was getting on and was actually the first Dr that i saw at the Christie Endo unit. Really friendly and again has a fantastic manner about her. Oh Nurse R the acro specialist was again super cool and put me at ease with the injections despite having to wait 1.5hr for me to return with my prescription. She had packaged up my syringes prior and was waiting for me patiently to get back from the pharmacy. Think i’ll start calling her Aunty R :)

    Lastly a mention to Prof T….last time i saw him he was in a rush and clearly really busy but today he was really at ease and his manner just puts you at ease too. Despite clearly being an academic he has a great sense of humour and is a really likeable guy. He cheekily reminded me that last time i came in he didn’t do a merry dance (or something like that) to celebrate that i was feeling better on the cabergoline as he knew it wouldn’t last and he was right! At the end of our chat he left the room, went into the corridor and exclaimed “Right, whose next?” in a really funny manner. Honestly kept us giggling all the way home :)

    All in all i’m feeling kind of fine and glad that i’m in such good hands at The Christie and Salford Royal Hospital.

    They are a cracking bunch of people and are making a positive impact on my time at The Christie and in general so thanks to the NHS for these staff and all the others :)

    Less than three hours after leaving The Christie, i went out watching Badgers with the Lancashire Badger Group If you want to see pickies then look for me on Facebook

    Thanks for reading :)

  2. Sounds like you’re making progress, which is great.

    Cabergoline seems to be working for me so far,my prolactin’s lower than it was so I’m staying on it for now. Where your growth hormone’s high, mine appears to be low. More news of that in November….

    Have fun with the injections! I’m sure you’ll get used to them soon enough.

    • Thanks for your message and glad to here about your prolactin! I’m just hoping that I don’t go back to being so tired and fuzzy upstairs as I was before the cabergoline. Look after yourself and keep in touch. Rich

      • Just opened the post and Salford Royal have arranged for two further sets of MRI to be done following the CT scan in two weeks but luckily on the same day. One of these is a head MRI with contrast agent via an injection to show the blood passage etc and the other is another pituitary scan. Thanks to my surgeon Mr G and his team for arranging these for me:)