The waiting is over…..

…. and there are no cancer cells!! No leukaemia cells and no dysplastic cells (blasts)!! Woop woop!!

Firework streaks in night sky, celebration background

This is fantastic news, but it doesn’t mean I’m completely out of the woods. I still need to have further treatment but this won’t be quite as traumatic as full on chemo (I hope!!)

Now I’m potentially going to fall into techy haemotology language now so bear with me if I do (equally comment and ask questions if I have lost you!!)

So the reason they think my blood counts have all dropped is because of a little internal battle between my two donors*, here by known as donor 1(the bad guy) and donor 2 (the good guy). As part of a bone marrow biopsy they check something called your chimerism which is basically what % of your cells are donor 1 v donor 2 with the hope that the majority are donor 2. In my case my CD3 (produce t cells – part of your immune system) chimerism is nearly all donor 1 (around 80:20 split) so this is the part they are particularly concerned about.

*Note that if you have only had one transplant this would be your cells v donor cells!

To add to that the cellularity (% space in bone marrow that as stem cells in) of my bonemarrow has also decreased. Previously this was 70% and now it is 40%. This has reduced very quickly in just over a month.

Therefore the concern is that donor 1 is starting to take over, but donor 1 was rubbish so I’m not producing blood cells in the rate we would like, etc. And also donor 1 might bring with it my leaukaemia.

So now what do they plan to do with me??? Now I’m such a rare and unique person I don’t think this has ever really happened before!! So of course I’ve got all the doctors scratching their heads and wondering what treatment to give me. My doctor actually laughed when I asked her if the treatment had worked before in the past for others!! Silly me!!

The basic plan is to kill off donor 1 and give me a top up of donor 2.

To kill off donor 1 the discussed plan was a course of ATG – Anti-thymocyte globulin. This is a collection of either horse/rabbit antibodies which will kill of my t- cells and to stop the rejection of the bone marrow. (It is predominantly used for treatment for Aplastic Anaemia and I had 2 courses back when I was 17/18).Mostly nasty flu like side effects, 18 hours on a drip a day, and a few weeks as an inpatient.

The top up of donor 2 will come in the form of DLI (donor lymphocyte infusions). So it will be a infusion containing some white blood cells from the good donor 2. Risks here are mostly more GVHD.

This will hopefully give donor 2 a chance to become more dominant and take over my bone marrow fully, and hopefully restore peace and harmony! Thus allowing my blood counts to increase and me to be all better! (well that’s the plan anyway).

So basically  I just need to suck it up and do the shitty 3 week stint in Kings again….. A few months of DLI….. and then hopefully everything will be fine and dandy!!! Now just to wait for dates and plans from Kings!

 

 

6 thoughts on “The waiting is over…..

    1. I have no idea! Think it depends on the availability of the DLI. I’m a bit gutted though as I have booked and paid for a weekend away first week of september and I reckon it will be then!! But I suppose health ought to come first….. x

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  1. Ian Wright

    Everytime, 2 steps forward 1 1/2 back. I didn’t r alone you’ve had this horrible illness for so long. Fingers crossed they get it sorted real soon. X

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  2. Sarah Reakes

    Hi Emma,

    You obviously have a lot ahead of you, but so so pleased that it wasn’t the dreaded relapse back to leukaemia. I knew you were unique and this proves it and you’ve obviously given the medics plenty to think about!! It certainly is complicated with you having had two donors and of course with the first one not having worked, I suppose there is always that chance that there will be some of the first transplanted stem cells left behind.

    Donor 2 stem cells just have to hurry up and get a move on and displace Donor 1 and then you’re sorted!!

    Take care and hope all goes well!

    Love Sarah xx

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