Merry Xmas!

There was a time when I thought I might have to spend Xmas 2008 in hospital listening to the kind of fare pumped out by guys like the chap on the left (and indeed me in my mis-spent youth). But thankfully, mainly because it took so long to get some decent stem cells for a transplant, that is not to be the case and I'll have to wait a little longer to hear "Smashie and Nicie's Christmas Faves" on UCH FM, or whatever it's called. It's great to know that so many of you have been reading this blog and I've had some feedback, which I'll pass on in a mo. But on that point do feel free to leave me a comment here, even if it's only to slag off my prose style or laugh at my hats. So...that feedback. Apparently the blog up to now has been a little too "detailed." (This from a female reader) And Nik points out that if I fill the entries up with reams of technical jargon and complicated medical descriptions and little or no (pause) emotion I will alienate my female fan base, such as it is. Two things.

(a) I'm a bloke. We don't do (pause) emotion terribly well, particularly when we're desperately trying not to get in touch with our feelings about having a nasty disease for fear of what we might uncover.

(b) I like technical and medical stuff and it's my blog.

But before I have a queeny strop let me try and address those issues head on...


MY TRANSPLANT: THE STORY SO FAR.

I'm not well (which I feel just awful about by the way) and my doctors have told me to come to hospital for a few weeks for a transplant. On January 6th I'll take some strong medicine to kill my disease. This will make what's left of my hair fall out again (which I feel just awful about by the way) and I'll have to be careful not to catch a cold for a bit. The doctors will give me some stem cells from the freezer which will help to replace all the good stuff that got killed along with the disease. Then I'll get better and come home again, which will make me happy. And with a bit of luck I'll not have to see the inside of a hospital for a very long time.

Seriously though I'm sure when the shit does hit the fan in January you'll be heartily sick of all the whinging and moaning I'll be doing. Medically it's all been quiet, mercifully. I had an echocardiogram at the heart hospital and a kidney function test (the first and only time that I've driven into central London with 2 litres of urine in a pot) just to check I'm in good general health (ha! ha!). I've also suffered the indignity of having a long cotton wool bud stuck up my nose to test for MRSA. So all in all pretty routine.

I guess my next entry will be when it all kicks off so have a great Xmas and let's hope for a successful 2009.

Eureka!

Somewhere deep in the bowels of UCH a scientist has been peering down a microscope at a slide full of some of the stem cells that have been so laboriously extracted from my unwilling bone marrow over the past few weeks. As we only managed to drag a million (per kilo) kicking and screaming into the petri dish it was important to find out if they were any cop. In other words will they do the job they're meant to on returning to the blasted wasteland that will be my body post the high dose chemo? Well the answer it would seem is a resounding YES. As with all these things there is a certain threshold that needs to be crossed before the green light can be given. In this instance it was the number of colonies that the stem cells formed in the dish that mattered as this indicates how well and how successfully they'll engraft and get to work producing all those lovely reds, whites and platelets. The target was 20 and my little beauties managed 38...nearly double. This makes up for the shortfall in supply.

So it's full steam ahead with the transplant now scheduled for Jan 6th and various tests of one kind or another between now and then. It's an odd feeling; I don't really want to celebrate as I've in effect just been given a ticket to hell, but it is good news nonetheless as we're back on track, and the goal of many years disease free is once again seemingly obtainable.

Stem Cell Collection 2

Bet you never thought there was such a thing did you? But indeed there is and this month we celebrate Plerixafor Hydrochloride This was the cunning plan of which my consultant spoke. Basically it's a really new drug which seems to have the effect of giving the stem cells we want to collect a great big boot up the backside to get them out and into the bloodstream. For whatever reason (Fludarabine being the number 1 suspect) I can't seem to mobilise enough of the little buggers to make transplantation a viable option. With Plerixafor however I was told there was a really good chance of getting what we need. It's not licensed for general use on the NHS yet but is provided to UCH by the drug company that makes it (Genzyme) on a named patient basis. As I ticked all the boxes they agreed to let me have some so that we could try again.

The protocol this time was to give me pretty nearly double the dose of G-CSF that I was having previously to give the Plerixafor something to work with. After 4 days of it I began to feel the deep down bone ache that I've always heard about with G-CSF but never experienced. It's down to the excess production in the bone marrow....as more and more cells get produced there simply isn't enough room for them all and your bones begin to struggle with the volume. You feel it particularly in the small of the back and chest (well at least I did). This was a good sign as it meant there might be something worth harvesting! On day four Nik and the kids duly dropped me off at UCH to spend the night up on the 16th floor.....the transplant ward. There's a great view of London from up there; next time I'm in I'll take a photo. I was given the Plerixafor injection at 11pm as scheduled and tried to get some sleep. (Fat chance)

Monday duly dawned (with the usual blood pressure and temperature checks at 6am. Why so bloody early?) and after breakfast it was down to the apheresis bay for another attempt. This time the call from the lab was much more heartening, a score of 0.7 - a seven-fold increase on the last effort! After another night in UCH and another day on the machine we scraped together another 0.2 which means in total I now have 1 million CD34 cells per kilo.

This is still some way short of the 2 million they originally told me we had to aim for, but 1 million apparently is still some sort of milestone because they used to transplant with this amount on a regular basis. With an extra million however it was found that the time it took the cells to engraft was shorter and therefore the period of neutropenia (and risk) somewhat less too. So what now?

Well for the last couple of weeks the lab at UCH has been growing some of the cells they collected to check their viability. They want to see if they function well enough to go ahead with just the million that we've got. I guess the other option would be to try and collect some more. But as the Plerixafor is provided by the drug company I don't know if more than one attempt using it is permitted or even safe. Also G-CSF and apheresis are both pretty expensive and quite tough on the body so I'm not sure if I'll get another shot. Lots of questions then and some answers hopefully tomorrow (Tuesday 2nd) when I see Dr D'Sa (my consultant) at UCH. Watch this space...

Stem Cell Collection

This is an Apheresis machine. I seem to have spent an awful lot of my time recently hooked up to one of these things. In order to transplant my stem cells back to me we first need to collect some, which sounds as though it ought to relatively straightforward. For many people no doubt it is...but not I'm afraid for me. The first way we attempted to do this was to use a cylcophosphamide "primer." The cunning plan here is do give the bone marrow a jolt with a rather large amount of this chemotherapy drug (or as the stem cell nurse at UCH put it "give the bone marrow a tickle!!) which has the effect of first suppressing it and then sending it into a frenzy of activity as it attempts to make up lost ground. On top of this the medics prescribe a course of G-CSF a type of growth hormone that sends production of white blood cells into the stratosphere. As there's so much of this stuff being produced there's not enough room in the marrow for it all and so some ends up in your blood stream where it can be collected by apheresis.

Well far from a tickle after I'd had the cyclophosphamide I felt as though I'd been repeatedly kicked with a pair of size 12 hobnail boots. I started to throw up during the night after the infusion and continued for the next 3 days feeling thoroughly wretched. (no pun intended!) As it was all part of a grand plan I didn't feel too depressed about it. The day of the harvest duly arrived when I was to see the fruit of all this nastiness turned into bright shiny new stem cells for the transplant. The target was 2 million cells expressing the protein CD34 (immature haematopoietic progenitor cells or blood stem cells) per kilo of body weight (I'm 90kgs!). They duly hooked me up and we waited anxiously for the result. After the big build up, the chemotherapy, sickness and general stress of the whole thing when the phone call came through from the lab it was a crushing blow. All there was in the bag was 0.1, a fraction of what was required. What's more when I returned on the day after and the one after that following more G-CSF injections they didn't even put me on the machine so few were there circulating in the blood. One of the possible reasons for this poor show is a chemotherapy drug I was given way back in 2004 called Fludarabine. If you follow the link and read down you'll see the killer phrase: "Difficulties are often encountered when harvesting peripheral blood stem cells from patients previously treated with fludarabine." No Kidding. Then to top off a really crappy few weeks my bloody hair fell out!

"Don't worry," soothed my consultant....."we have a plan."

To be continued...

Here Comes The Science Bit

As I'm going to be wittering on at length about this transplant and the various twists and turns I'll encounter on the way perhaps it would help if I outlined what exactly is going to happen as I understand it? Hematopoietic stem cell transplantation, to give it it's full name, is a process by which blood stem cells are extracted from the bone marrow or the blood and then returned to the donor or recipient after a period of high dose chemotherapy; in fact another way of describing the prcedure is as "high dose chemotherapy with stem cell rescue." The rationale is that by putting some stem cells in the bank (or deep freeze) it then allows the doctors to smash you with lethally high doses of chemo knowing that you've got the back-up of those cells which can then be returned and rescue you from what would otherwise be a life threatening situation. The hope is that by destroying much if not all of the bone marrow you pretty much eradicate all of the disease at the same time, or in American military parlance "bomb it back to the stone age." As my cancer is classed as low grade it should take it a good few years to clamber back through the iron and industrial ages to a position where it can again attack me with it's vast array of nasty weaponry!

This ladies and gentlemen is what is known as an autograft as I shall be getting my own cells returned to me. It is not a cure, however, as unfortunately as you return the cells you also return the disease and so it will re-appear.

An allograft on the other hand is the process by which cells are taken from a donor and given to the patient with the disease. This promises a cure as the stem cells in this instance are disease free and perfectly healthy. Hang on.....why am I not doing this? Well as with all transplants from a donor there is a risk of rejection, and in this instance it's that which has been transplanted in that does the rejecting. As the donated stem cells start becoming your new immune system they seek out and destroy anything foreign. This can be a good thing if there are any left over cancer cells that need dealing with but not so good when the alien bodies they identify are your liver heart and lungs! In order to try and prevent this doctors tend to give these transplant patients a course of steroids to damp down the immune response....but this too comes at a price as it increases the length of time you are vulnerable to infection, or neutropenic.

Neutropenia is a problem associated with autografts too but the length of time involved is much shorter, normally only a week to ten days or so. The dangers of the two procedures are starkly illustrated by the mortality figures which currenly stand at around 2-3% for those having an autograft and around 30% for allos! So on balance although I think I will have to have an allo at some point for now I'm not prepared to take the risk.

That's roughly it. They reckon it takes about a month once you get cracking. A week or so to fill you up with chemotherapy, a week to ten days to wait for the new cells to graft onto the bone marrow and get working and another couple of weeks or so to deal with any infections that come along (and they will!) and for the immune system to get back up to safe levels. You've also got to be making enough platelets and red blood cells too before they let you go home. Simple.

So What's Going On?

This magnificent building(!) is University College Hospital, a place that is now very well known to me. The top floor of this tower is the transplant unit where I'll be taking up residence shortly to undergo a gruelling Autologous Stem Cell Transplant. (More on this later) It's all in a bid to get me a decent period of remission from my cancer, a type of low grade Non-Hodgkin's Lymphoma which goes by the name of Waldenstrom's Macroglobuliemia. The thing about these types of malignancies is that because they are low grade or indolent they are pretty much impossible to cure and the treatments you have for them ratchet up and up in intensity in a bid to try and acheive the longest possible remission. My hope is that by having this procedure now I can enjoy a good few years disease free before I have to start thinking about the next level up in nastiness and toxicity. That's the problem with the treatments currently available, they are extremely unpleasant; there just seems to be no gentle way of dealing with the problem. All this nastiness happens in a building that has been deemed a carbuncle according to this architecture website.

“Some buildings make your heart freeze when you look at them and this is one of them. This building is utterly without joy. It kills the Euston Road.”

Well it certainly makes my heart freeze when I see it, but that's got nothing to do with design aesthetics!