Thursday 24th January… A disturbed night!

I was still in a bit of pain when I settled down, lots of gurgling but not much relief,  I had something to damp down stomach action and a bit more oromorph, which helped dull the pain, but of course did nothing to alleviate the underlying cause.

But all went reasonably well (although very broken sleep) until I woke at about 4 this morning feeling a bit sick – and promptly was 🙁 .  Nurses were great at a speedy bed change and once I settled down again, I felt much more comfortable, gripes had gone and I slept really well until 8ish this morning when the usual bloods, obs, breakfast routines started.  I’m not on a drip at the moment, so I’m not tethered to my pole and have a bit more freedom of movement!

And hot off the press, just as I was writing this, Dr Lown popped in with an update.

They are still waiting to hear whether the manufactures of Ibrutinib (Jansen) will supply the drug for me, and that decision is expected this week.  If the answer is yes, that is the route to go (it will take a couple of days to get it).

if the answer is no, then there are other options, localised radiotherapy to shrink specific nodes, but of course that is not a systemic fix.  But there are some new chemo protocols which have been developed and used with success in relapsed MCL.

And there is talk about discharging me as an inpatient and possibly starting chemo (if the Ibrutinib is not forthcoming) next Monday.  The chemo routines seem a standard 3 days every 3 weeks cycle.  Part of the decision making for that will depend on my latest calcium levels.

Meanwhile I will have another short course of steroids just to shrink them down again.

So movement and progress and therefore very much (yes, you’ve guessed 🙂 ) …

Onwards and Upwards!


2 Responses to “Thursday 24th January… A disturbed night!”

  1. Liz on 24 Jan 2019 at 20:12 #

    Sorry not to have been in touch, but I am going through some check-ups at the moment. It looks as if you are going through the mill, but hopefully, a good treatment plan that suits you will put you on the right path soon. You always sound so positive through it all……so keep going onwards and upwards! Lots of love, Liz xxx

  2. Peter on 24 Jan 2019 at 20:50 #

    Hi Liz,

    Hope your checks are all positive. Always a nerve wracking time.

    Yes, looks as if there are several options for treatment, which is reassuring. And have to keep positive, the alternative is not an option (and it’s a service ethos isn’t it, put your head down and get on with it! 🙂 )