Trusting the experts

Today I went to Kings for a clinic appointment, blood tests and chat with my consultants. It was a day of lots of waiting – I had 80 people in the queue in front of me for blood tests! And after arriving at 11am, I didn’t get to leave the hospital till gone 4pm. However, it felt like a very worthwhile appointment as I got lots of my questions answered.

I actually ended up having a consultation with two of the senior consultants (Austin and Victoria) and two specialist nurses! I got the full results of my bone marrow biopsy. With the highlights being that I have c.6% blast cells, so still quite a low level. But all of these cells contain the defect monsomy 7, which is a high risk genetic marker.
I expressed all my concerns about the current treatment plan of azacitadine not being strong enough or worthwhile pursuing as we have done it before and it just doesn’t seem like an appropriate drug for someone my age.
They explained why they were taking that action and the overall plan. The basic plan is to get me up to 100% donor. So they believe that should be achievable through the azacitadine and donor top up cells. This is as long as the disease doesn’t progress as quickly as it did in 2015, and the hope is that this donor is strong enough to fight a bit harder. They are going to give me donor cells as soon as they are available. And then my next round of aza will be on the 16th July when I get back from my holiday (they had no issues with me having a holiday and delaying chemo one week – only potential issue with me flying as my platelets are low, but I might be able to shift the holiday to all train transport)
We have booked in a Bone marrow biopsy for the 6th August to see how things are progressing after 2 cycles of the aza. Obviously my bloods will be monitored in between to which will be an indicator.
They are also looking into using an immune blocker drug. The drug has been approved for other types of cancer but it’s still in the clinical trial stage for blood cancer. Unfortunately I don’t tick the boxes for the trial as I’ve had a transplant, but they are hoping I will be able to use it on compassionate basis. Failing all of this we will move onto stronger chemo. But their main thing is they want to exploit the donor I’ve got now as much as possible and try and push out my old donor and me!
But the most important thing for me today is that I have left the appointment feeling confident and safe. Not necessarily confident about my prognosis and that we are going to beat it, but confident in my haemotology team and that they are going to do all they can for me.
In other news….. I have contracted shingles… AGAIN…. although this time it is horrific. The rash itself doesn’t look that bad, but oh my god it is painful. Its a consistent nerve pain – so like a shooting pain around the site of the rash that travels down the left side of my body and makes me spasm. The skin all on my left side of my body, and the rash is really hyper sensitive when touched too. I’m on some strong pain killers and anti viral medication, but so far the aren’t doing very much and consequently I’m not getting much sleep. We are upping the dose tonight in the hope I can get some sleep. For those who don’t want to see my spotty booty then look away now!!

9 thoughts on “Trusting the experts

  1. All sounds like good plans for attack! Fingers and toes crossed!
    Have you met/contacted your new donor personally? (No idea if it’s allowed!) and how often do you have cells from them? So great there are complete strangers out there willing to help!
    Shingles sounds so nasty – I was interested to learn that the part of skin affected relates to which nerve is infected below the surface, makes sense once you know I suppose! Did you have chicken pox ever?
    Have fun on your holiday, glad you can go still. Xx


    1. I’ve sent/received a letter to my donor. We are now at the stage that the anonymity could be lifted if we both chose to. I haven’t had any more cells from them since the transplant. I’m not sure how many extra servings of cells I will receive, will depend whats available. Imagine I will have it monthly.

      Singles wise – the pain is horrific! Never experienced anything like it. Its like shooting nerve pains. Pain is starting to fade now with the pain killers though. I’ve had chicken pox twice…. once as a baby and then again in 2013! New immune system means you lose your immunit!

      Em xx


  2. Shingles: ouch ouch. I had a bout after coming off the aciclovir and they were not much fun at all… The benefit, though, was that since I recovered, having my back scratched is absolute bliss (I think because the nerves were damaged)! It’s a strange silver lining, but I’ll take it. Apparently I look like the cat who got the cream when I convince my wife to give me a scratch!

    Anyway, I’m glad your docs have a good, clear plan to get those pesky blasts (with big thanks to this donor); hope it all goes as smoothly as possible. Great to hear it’s not slowing you down much, too.

    George x


  3. Lisa Meakins

    Omg Emma!!!
    I came across your blog while searching if I could catch shingles twice because I have a low immune system.
    But, gosh, I had no idea… you have just inspired me…
    good luck with the new treatment, I will be following your blog. xx


    1. Thanks Lisa! Don’t worry I checked with my doctors and its only contagious if you touch my blisters or I touch them and then touch you! I have mDe sure to keep them well wrapped up! It can reactivate if you immune system is low though, which is what has happened to me! Take care and have a lovely weekend xx


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