Fully prepared

Just spent two days in hospital getting prepared for the transplant. 

I had a day of tests on Monday: nuclear medicine for kidney and heart and a lung function test. The nuclear medicine tests involved lots of waiting around, I was injected with a radioactive isotope at 10:30 then bloods were taken every hour to check how well the kidneys are removing things from the blood stream. The heart test had me injected with more radioactive stuff and then laid on a table being scanned for about 15 minutes. I promptly nodded off, which I have also done during MRI scans too. It must be something about diagnostic screening I find somewhat relaxing.

In between blood tests I got talking to a lady who had been in for 4 weeks already. She described problems such as fractured verterbrae plus her legs were swollen due to some issue with lymph nodes making it hard for her to walk, and the medication she was on wasn't working. So the doctors were trying to find out what was going on. She was reasonably up beat about all this, but was furious that she had been wheeled to nuclear medicine and no one had told her she would be there for most of the day and because of this she'd left her cigarettes in her room. All she wanted was to smoke and she'd been told to wait to see a nurse; she whispered conspiratorily to me 'they don't know me: I'd crawl out of here if I had to to get my fags'. She went on to tell me that her mum, who suffered with some other horrible sounding disease, has to have oxygen tanks and tubes up her nose. But 'I get her to turn the oxygen off when I'm round there so I can have a fag...she has one too!'. This conversation left me with mixed feelings, partly I thought I should be happy with my lot, I'm ill but not that ill. But then I thought this lady must have been 50, so her mum must have been around 70. Two people with a blatant disregard for their health who have had longer on this planet than I'll probably get. Where's the justice?

I was cheered up by the lung function test which had me doing various things with my lips and teeth round a plastic tube. This in itself wasn't funny but the consultant behaved like an over zealous drill sergeant and when I had to blow out as hard as possible she was there shouting 'come on, more, more, you've still got a bit more, harder, harder!' until it hurt. And the same when I had to breath in. This went on for about  45 minutes of tests. On the plus side I found out my lungs are either within or above the normal range. I won't find out the results of the nuclear medicine tests for a few days.

Yesterday I had the central line fitted...



The procedure took around 45 minutes and was done under a local anaesthetic. I was asked before whether I wanted to be sedated to which I said no, sedation meant they would keep me in for longer. When in the theatre before the operation, one of the nurses (who I could only see upside down peering over me) told me to make sure I kept breathing as some of it would be a bit uncomfortable. Another nurse from somewhere else in the room said 'no sedation?', 'no, no sedation', 'oh you are brave'. At which point I started to panic: 'I'm not brave I just clearly don't fully understand what you're about to do...should I be sedated?'. 'No you'll be fine'. And she was right. At one point I had this quite uncomfortable feeling in my chest and I winced a little. The nurse asked if I was ok and I said yes but it did feel a bit weird. The surgeon then told me 'you currently have a line going into your heart so that would explain that'. Then it was done, and I went home within 30 minutes of coming out of theatre.

So I'm ready and raring to go. I'm not going to cut my hair off before going in I've decided to wait for it to start properly falling out and just enjoy my last couple of weeks needing to style it. It will give me something to do in hospital anyway.

Finally going

My hair is finally falling out. After being told it may fall out from day one (that being back in June) it is now going. I had a bath the night before last and there were at least 15-20 hairs there when the water had gone. I can rub my hands through my hair and get about 3 or 4 each time (I will stop doing this). There is still not enough loss to really notice, but I know its thinner. Strangely none of the grey hairs have fallen out and yet you would think they would be the first to go.

Had my 4th and final (for a while at least) bone marrow biopsy yesterday. I have to say, no disrespect to the doctor doing it, but it was carried out slower than usual and was the most painful I've had. The pain comes when they extract the bone, it only lasts about 20 seconds but there is a bit where the dr has to rock you slightly to get into the bone and that does smart. The reason being it is possible to provide anaesthetic for the skin and flesh but not the bone. I should say that my previous biopsy really wasn't painful at all, and I say this for anyone reading that might be about to have one. Extracting the bone marrow itself is more uncomfortable than painful and just feels like someone rubbing a sensitive bit of skin, but inside you.

Fingers crossed for good results as despite the serum free light chain levels going up recently, the level of plasma in the bone marrow had gone down quite signficantly at the last check so hopefully this trend will continue as it is better going into transplant with the minimum amount of marrow infiltration.

I have been reading up on the autologous transplant and can now provide a summary of my hospitalisation.

27th Feb - heart, kidney and lung function tests plus some baseline xrays
28th Feb - central line fitted
1st Mar - admitted to Addenbrookes
2nd Mar - high dose chemotherapy: approximately 350mg of Melphalan administered over 30 minutes (to put this into perspective a normal course of Melphalan would be 40mg administered in 10mg doses over 4 days)
3rd Mar - stem cell transfusion: I have my harvested stem cells reintroduced to me ('how do you do') via canula as with a blood transfusion. Apparently the anti-freeze used to stop the cells exploding when frozen gives off a smell of sweetcorn when the cells are defrosted and this is the overriding taste in your mouth for a few days.
For 3-4 weeks after the 3rd Mar - monitoring...

The information I've read says I should feel well enough in the first week to get up shower and dress, but after this blood counts drop and the effects of the chemo kick in. It takes 12-28 days for the stem cells to establish themselves and start working (called engraftment), and during this time the side effects can be at their worst. Side effects include:

• bone marrow suppression which leads to...
• anaemia and tiredness (lack of red blood cells)
• bruising and bleeding (lack of platelets)
• infection (lack of white blood cells), most patients apparently develop an infection at some point but this is generally easily treated
• pain and ulceration of mouth and throat, levels of suffering differ but if it is so bad I can't eat it is nice to know there is a 'commercially prepared feed' available - sounds yum
• gut side effects
• alopecia (still the one that bothers me the most even though it grows back after a few months), I think it is the loss of eyebrows which I find the most disturbing, any suggestions for how to create reasonably believable fake eyebrows would be much appreciated.

So there we are, for anyone planning a visit you now know what to expect. I will be in room on my own to avoid infection, I will be on a special diet for the same reason and don't bring fresh flowers, pot plants or fresh fruit with you as you will just have to take them home again!

Recovery time is around 3 months but may be shorter, I believe on return to home I'm still likely to feel tired and weak, I have to avoid crowded enclosed spaces for a while and swimming pools for 6 months.

On a positive note, I am happy to report that the peripheral neuropathy (or numb feet in my case) that I have been suffering with for a while is slowly going away, I think. It is hard to tell as I may just be getting used to it, but I don't think that is the case.

AND I want to remind anyone who does not know or who has forgotten that Neil Fairchild still intends to run the London Marathon in aid of the Anthony Nolan Trust and needs donations. Please visit www.justgiving.com/neil-fairchild to make an online donation for this great effort. 

Date Confirmed

Just returned from a few days at Wells-next-the-sea with family, good fun but incredibly cold. Thought we could manage at least a couple of hours on the beach diggin' 'oles but it was less than an hour before the youngest was balling unless she had something to eat and the eldest was pleading to 'go back to the house.' The 'house' being the youth hostel in Wells which I can strongly recommend for families with young kids.

I have today received a letter which confirms that my date for admission to hospital for the stem cell transplant is the 1st March. I'd had a chat with the transplant nurse yesterday where she told me this, but she explained the date can change depending on whether there is a bed available. This depends on how procedures are going for the patients in the beds and on any emergencies, which obviously take precedent. Therefore I could end up waiting a few more days. But you do get used to waiting when it comes to cancer as everyone is so ill you just have to expect things to take longer than predicted.

If all goes to plan, I will go in on the 1st March afternoon and 'check in', then on Friday morning you are hit with very high dose chemo. Then follows 3-4 weeks in hospital...time to start reading up on the details about what I'm about to go through!

What's a +1q 21?

So I had my appointment with the transplant consultant yesterday, and for the first time I left feeling ok. There was some positive chat and a new bit of information which was a bit rubbish, but on the whole ok. Normally I go into these appointments thinking that there are unlikely to be any nasty surprises - I even went into one having had a chat with the senior nurse the day before who told what was going to be covered - but on every occasion so far there has always been something that has knocked me sideways.

The main part of the meeting was me asking about the letter he sent which I talked about in the previous post. My main concerns were the survival time of 5-7 years for younger patients and his concern about the presence of a '+1q 21'. I had read that the life expectancy of people with Myeloma is in the region of 6-8 years in a booklet, but I thought that was because most people with Myeloma are over 60. Now I am reading that this does apply to me and that I will be lucky to reach 40. To this I was mildly reassured that although the life expectancy of 5-7 years is a cold hard fact, this is with 'conventional' treatment and his aim is to step outside of conventional treatment as this length of survival is 'not good enough' in my case. So it is nice to know that the aim is to do better than 7 years, but the flip side of this is the way of getting there is through an allogeneic stem cell transplant (donor transplant), and as currently a worldwide search has come up with no donor matches for me, this means a cord blood stem cell transplant, which is quite a way from 'conventional' almost into experimental and is by no means a walk in the park. I don't think I'll talk about what I know about this right now!

So I then asked, what is a +1q 21? This is apparently a chromosome which is present in my Myeloma cells which is associated with more aggressive behaviour; and by more aggressive this means the Myeloma tends to be more resilient. This, he said, was evident in the way the disease has seemed to respond well to treatment at first but then quite rapidly stop responding. My response to cyclophosphamide was excellent for a few cycles, then things just stopped and then my SFLC started rising again, and Velcade the exact same pattern occurred just over a shorter time span. The upshot of this is that it does not bode well for my response to high dose chemo and the length of remission after the stem cell transplant which, if my consultant was predicting based on the information he has, is unlikely to be long. Quite a big thing to go through for something that probably isn't going to do the job, but we have to try the conventional stuff before the unconventional becomes an option.

So a bit of an up and a bit of a down, so like I said all in all, ok. And better than usual.

Finally we discussed dates and there is a general feeling of urgency to get me to transplant. I think due to the fact that my SFLC levels were shown to be rising on the last blood test there is no reason to think that the disease is not just coming back at quite a rate and therefore the sooner they hit it the better. I go for nuclear medicine tests (for heart and kidney function) on the 27th February, I have a line fitted on the 28th February (which is where I have a 'soft, hollow, flexible tube' inserted into a large vein in my chest just below the collar bone for easy administration of drugs) plus a lung function test and some xrays of my chest, and then shortly after that (estimated 3 days) I will go in for transplant.

So this is it, less than 2 weeks away, I'm going to enjoy my first alchoholic drink in ages as I'm thinking what harm can it do now?

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!