Hello & Welcome

Hello and welcome everyone to my first ever blog. This is primarily being written to keep all my friends, family and interested parties up to date with my current ongoing treatment for Myeloma. Hopefully this way nobody will feel that they can't ask me about my disease as it will be all here to see, and this way people will not need to ask me as many things as they will know it already! Not that I don't love talking about it...

I have been inspired to write this blog for three reasons:

1. I am now approximately two weeks away from going in to hospital for autologous stem cell transplant (auto SCT) and I always intended to write a blog while I was in hospital for 3-4 weeks;
2. I have received a letter from my consultant which provides a wonderful medical summary of my life since diagnosis and it got me thinking I need to start writing stuff down; and
3. because from today I am supposed to start losing my hair and that feels like a significant milestone to me so it seemed liked the optimum time to get on with this.

For the benefit of anyone who has stumbled across this blog I should briefly summarise that I am 32, I was diagnosed with Myeloma back in June 2011 following the collapse of a verterbrae in my neck and have been on various treatments since then. I have a type of Myeloma which exhibits only in the form of serum free light chains (SFLC) which on diagnosis were at a level of 3880 (when a healthy adult should have around 20).

I have undergone 8 cycles of CTD, and 3 cycles of Velcade (with Dexamethasone) and, in the words of my consultant, have had a response which is 'suboptimal' and we are currently 'losing disease control again'. This refers to my final cycle of Velcade where my SFLC count actually went up, which is a cause for concern as this is usually used as a second line treatment and I think everyone was expecting it to do a bit more than it did. The positive to be taken here though is my bone marrow biopsy results which at diagnosis showed approximately 50% myeloma cells, but which at the last biopsy was around 10% - I am having another biopsy next Thursday so fingers crossed for that.

However, my consultant is concerned and in his letter has stated that 'the median survival with myeloma is in the order of 5-7 years in younger patients, however Andrew's disease is more aggressive and I think conventional therapy is unlikely to control the disease for as long as this'. Scary stuff really and the reason why an allogeneic stem cell transplant (allo SCT; donor transplant) is planned in the long term in an attempt to cure this weird and horrible disease. I say weird because since recovering from the neck fracture (for which I had to have part of the verterbrae removed and my neck is now supported using metal rods) my life has been quite ludicrously normal. I have been working part-time from home; I could have been working a lot more, but have been taking the opportunity to spend time with my kids who I thought I might not see for a while if I had an allo SCT. The side effects I have suffered on CTD and Velcade have been minimal, with slightly numb toes being my biggest complaint, and I am told over and over again how well I look - which is no good if you want a bit of sympathy. I do not feel like an ill person, and yet here I am on serious medication facing stem cell transplants - that is why this disease is weird.

I have to say that most of my time with Myeloma over the past 9 months has been happy time, spent doing nice things with my wife and kids with a new found appreciation of both the former and the latter! This is interspersed with some real shitty Myeloma related moments, granted, but then that is to be expected.

So anyway, I now have to have an auto SCT to see where that gets me, and despite the statistics noted by the consultant above it is worth remembering that remission following an auto SCT can be anything from 0 to 15 years, and as far as I understand there is no way anyone can predict how long your remission will be simply by looking at how the disease behaves or how it responded to initial treatment.

In preparation for my auto SCT I have undergone 'mobilisation' which has involved a high dose of chemo, followed by 8 days of 'granocyte' injections to stimulate the production of stem cells and I had my stem cells harvested last Thursday. After 5 hours on the machine having my blood sucked out and pumped back in again, I had managed to provide over twice as many stem cells as required for two transplants. This was great news and showed that the bizarre pulsating pain I suffered for around 24 hours in my spine and ribs prior to the harvest was worth it.

I have an appointment with my consultant tomorrow which I always feel pretty crap after. I think this is mostly to do with the fact that my life is so normal, I feel good most days, but his appointments are always full of harsh realities which remind me of the situation I am in and what I am going to have to go through to get out of it. But then I'll come home to my kids who are too young to have any idea what is going on, they'll just be normal, and I'll stop feeling crap and get on with appreciating my time with them.

I should say sorry for the blog title, I wanted it to be the Nash Files but some other enterprising Nash had got there first!