Monday, 29 June 2009

Umbilical Cord Blood - what & how

An under 3 minute video that gives some insight about umbilical cord blood and what a valuable resource it is.

Sincere thanks to Andy at from where

Saturday, 27 June 2009

Transplant & ANT Day updates

Firstly re. the Anthony Nolan Trust day event - many, many thanks for everyone that showed up. Although not everyone was eligible to be signed up, when Sarah left at about 19:00 (she left early to be at home with me because of the news about the cord) about 16 people had been actually signed up.

Apparently some more people arrived after that so although I don't think the magic number of 30 (the sort of "break even" number for ANT for such events), 16+ people were added which hopefully means 16 or so lives potentially saved somewhere in the world - you are heroes all of you!

News about the cord progress - I received a call from the hospital, if I'm understanding correctly it sounds like a couple of cords were found with the initial search that yielded the one that got damaged the other day.

It seems then that the hospital are in the process of securing a cord from the United States to supplement the viable bag from France - this is obviously very positive news and will keep folks posted as to what this means re. new dates for going into hospital.

Wednesday, 24 June 2009

Transplant postponed

Having geared myself up psychologically for going into hospital tomorrow and received some wonderful words of encouragement and warm wishes from folks (many thanks for those!) I got a call earlier this evening at about 18:40 from the hospital with some bad news.

You probably recall that I was due to receive cells from a single umbilical cord (normally two cords are used owing to the size of cords and the number of cells they contain versus those required). It was received in Oxford today and apparently was transported in 2 halves; one bag split.

Although half the cord is still usable it is not enough to carry out the procedure and a new cord needs to be found, the team in the hospital is searching for one again through the Anthony Nolan Trust.

Effectively everything has been postponed 2-3 weeks as radiotherapy will need to be rescheduled amongst other things.

All in all not the news I wanted to hear this afternoon but trying to be philosophical about it, I get more time with the family, more time to build up my strength ahead of chemo etc. and who knows, maybe an even better match may be found.

Tuesday, 16 June 2009

Anthony Nolan Trust day

Sarah, my amazing wife, has found the time in-between managing everything else to arrange an Anthony Nolan Trust day at Jake & Luke's school next Wednesday (24th June).

The session is from 16:30 to 19:30 at St. Edmund Campion school and has been set up to promote awareness of the Anthony Nolan Trust (ANT) and get more people signed up, especially people with ethnic & mixed-ethnic backgrounds as this is where the ANT do not have many people on their register.

If you are in the neighbourhood, please feel free to come along!

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Monday, 15 June 2009

"You've got gallons of stem cells..."

Today (Monday) was first of the harvest days, I've had 4 days of the GCSF injections and my lower back and breast-bone/ribs were really painful, to the extent I couldn't pick things off of the floor and have had difficulty sleeping.

In a way then I was looking forward to the harvest but also apprehensive about it too because of the general procedure (see previous post). Anyways, we arrived around 08:20 right on time for our 08:30 appointment.

Things kicked off with a general tour and overview and then bloods taken to see if a harvest would be worthwhile (i.e. had I generated enough stem cells for collection), this is a quick test that says definite yes, definite no or maybe; I was a maybe and this prompted another longer test that took about an hour to complete.

So at about 10:10 the result was announced, they were looking for a number in the area of 8 or better. I was 60!!! Goodness knows then why the first test was so lukewarm then but it meant that it wasn't a wasted trip and the machine was prepped.

This took a fair while to hook up and once all was ready I had a local anaesthetic to my arm so that they could insert the needle that would draw the blood out of my body, the return blood was hooked up to my Hickman line as expected. However, the machine started complaining about the return line pressure and I ended up with a needle in the other arm for the return flow.

I was told that this isn't that uncommon as Hickman lines are designed for chemo and not the pressure of the "blood extraction machine" (there was a technical term they used but I've forgotten), it just made things awkward as my mobility was vastly reduced.

The procedure is 200 minutes and fortunately I was able to sleep for the first 103. When I woke up I discovered that the machine variables had been tweaked to eek out more cells from me given my high count (this had been discussed prior to me being hooked up so I was OK with that).

Spending the rest of the time was the nurses taking more blood (they were worried that I had spiked another temperature) and feeding me calcium tablets and milkshakes, a side effect of the procedure is that one of the anti-coagulants causes a transient calcium loss that causes a tingling in the lips, fingers, toes hence the calcium replacement measures.

Unhooking was uneventful - just a bit sore - and we set off home. Just before we got to Maidenhead I received a call from the hospital indicating that I "had gallons of stem cells", this is great news as it means that I don't need to go back tomorrow (Tuesday) and I don't need to have anymore injections - woo hoo!

A trip to Oxford is still on the cards for Tuesday though as it's the radiation test dose, at least though that's in the afternoon so tomorrow will hopefully be a less exhausting day.

Vincent was asking more about the procedure, stem cells and my treatment - I'll explain as best I can...
  • The treatment today was to collect peripheral stem cells for my own use, the GCSF injections stimulate the bone marrow to over produce the white cells (hence the bone ache) and the blood collection machine extracts blood from me, spins out the cells and returns the rest.
  • The stem cells are to be used only if the umbilical cord transplant fails, so the stimulation of white cells (although I believe in some instances this is used for some transplant patients)
  • The cells taken from me today, should they be used, will return me to my current remission state with a likelihood of relapse so the umbilical cord is key as that is my chance for longer term survival
Hope this answers the question!

Thursday, 11 June 2009

Harvest Festival

Not that I'll need it because the transplant will be fine of course but in case things go wrong, the doctors will "re-boot" me by injecting my own white blood stem cells back into me, this will of course mean I'm back in the remission state but let's not go there.

In order to get these stem cells, I need to take a course of injections of something called Granulocyte-colony stimulating factor or GCSF. These started today (Thursday) and carry on tomorrow, over the weekend and the last one will be after the first day of harvest (Monday) and the point of the GCSF is to stimulate the excess production of white blood cells so that they can be harvested and given back to me should that be necessary.

Of course there are side-effects but they aren't too bad just ironic that they will mirror to an extent what alerted to the whole problem back in February, namely bone ache as there will be excessive (good) white cells crowding out.

At the hospital before being discharged, I was asked if I wanted to do the injections myself. After picking myself off of the floor after laughing so much (I am better with needles now but still hate it and can't see myself doing it to myself) the option of the local GP and/or district nurse came up and that's indeed what happened today and will be the case over the weekend.

Monday I'll be back at the John Radcliffe over at the National Blood Service for the harvesting to take place. The procedure is identical to the bone marrow donation (not test) process - a needle is put in one arm, the blood extracted and put through a centrifuge that spins out the white cells and the rest of the blood is returned through a needle in the other arm; the exception in my case is that as I have a Hickman line the returned blood will go via that instead. Unfortunately the line can't be used for extraction as it is too soft for that process.

It takes about 3-4 hours to do the extraction and quite a bit of time to set up too, Monday will be a long day then and I'll be back on Tuesday to finish the process. Tuesday I have to finish at 14:30 as I then need to get over to the Churchill for my radiation test dose at 15:00.

I think Wednesday I will be largely in bed!

Dr. Bruce Banner...

Dr. Bruce Banner was the Incredible Hulk in case you didn't know; not that I'm being glib about it but every time I think about radiotherapy I can't help but think of the the opening sequence of The Incredible Hulk TV series from the late 70s. The consultant told me I was showing my age but it made light of the situation at any rate.

Next Tuesday (16th) I will have a radiation test dose, this will allow the medical team to extrapolate and determine what dosage they need to apply during the transplant procedure - the key thing of concern are the lungs and not "over-cooking" them, things like the brain and heart are apparently very resilient to radiation and the risk there isn't so bad.

The test dose will also get me used to the procedure - the radiation is only applied for 20 minutes or so but the set-up takes a long time as I need to be positioned "just right" within a perspex box before the dose is administered, the reason for the box is that it helps disperse the radiation more evenly apparently over the body.

Because of my age and they think I can take it, my proper treatment will be in 5 doses (as opposed to 7 or 8), the point of the radiotherapy isn't so much to kill remaining cancer cells (although that may happen but the chemo is meant to take care of that) but more to "sterilise" the bone marrow to reduce transplant rejection (Graft versus Host Disease).

Although the procedure is painless, side-effects will be tiredness, sensitive skin (not as bad as sunburn but more like 'sunblush'), nausea/vomiting, diarrhoea, sore mouth (ulcers and dried up salivary glands) and hair loss (I've been guaranteed that I will lose my hair with this...)

Turning green and getting really tall and muscular when I'm angry isn't on the list of side effects.

Time flies when you're not in hospital

Well if you didn't know already, I was discharged from hospital last Saturday (6th) - hooray! - and can't believe how quickly the time has flown.

Despite being ready to go in the morning, logistics at hospital and home meant that it wasn't until early evening that I got home, it was fantastic though to sit and watch Robin Hood as a family and make a "pizza night" of it!

Sunday was a quiet day for us all and was just an opportunity to catch up with things in general and for me to start helping out around the house some; it gave me an opportunity to get to grips with some tasks I needed to get on with at home, breaking 2 computers wasn't on that list of things to do but somehow I accomplished it...

Monday a lot more hectic with school of course and Luke's swimming. I stayed in and didn't see much of Sarah but did get one of the computers working again better than before, but I think that's more luck and perseverance than anything else.

Tuesday was busy as it was a hospital visit to the Churchill for a discussion with the consultant about the radiotherapy treatment (more on that separately) and a follow-up on the discharge - no problems on that front but they did see that although my blood count is coming up, it's not coming up as quick as they would like for the harvest (more on that separately too!) so they have altered my tablet medication slightly to hopefully help.

Wednesday, morbid but necessary, we reviewed our wills and actually had quite a few amendments to make since they were drawn up in 2000 that took most of the morning and the rest of the day was more household tasks and an opportunity to drive Sarah around for a change. Also a trip to the dentist to ensure no infections there (which might jeopardise the transplant - yes you've guessed, more on that later too) and an unfortunate parking ticket as I didn't realise that they had changed the parking rules since February :-(

Today (Thursday) - PAPERWORK!!! Blimey, I don't know how Sarah's been able to cope with me generating all this additional medical & governmental paperwork! Anyway, I was able to help out a bit with that and with both of us on the phone in the study it was like we were running a little business! Oh, and we're having our boiler replaced too because otherwise we wouldn't be hectic enough...

Also today, my GCSF injections started - I'll cover this in the blog about harvesting - so having moved from a week of practically being bed-ridden and nothing to do it's all gone manic (and very tiring)!

Thursday, 4 June 2009

Heart & Lungs...

As mentioned yesterday, there is some work to be completed pre-transplant and some of that happened today.

This morning I popped downstairs to the Cardiac Unit and had an echo test of my heart done. This is like an ultrasound but for the heart and bar some electrodes attached to me the principle seemed exactly the same.

I didn't get to see anything as I had to lay on my side, but with my track record of things medical that was probably a good thing! Anyway, my heart showed up fine with a very very minor observation about my Mitral Valve but certainly nothing out of the ordinary or causing concern to the medical team.

Next up was an ECG - loads of electrodes attached all over legs, arms and chest that took several minutes to set up. All for a 15 second trace and then they were whipped off! No problems on that front either.

Had a long chat with the Transplant Co-ordinator (she is absolutely brilliant) and got more details about dates and other stuff which I shall capture in another blog later (still waiting on some more details).

In the afternoon headed over to the Churchill for my lung test - it was a breeze (ho ho), all fine there too. In fact the only problem as I understood it that with my low blood count, I didn't have enough haemoglobin to absorb all the oxygen I was able to inhale!!

Didn't rush back to the JR, beautiful afternoon here so Sarah (she was with me all day) and I managed to spend some time in a lovely garden over at the Churchill which was wonderful.

Pretty tired after all of this and hooked up with IVs for the night that should take me through to 3am :-(

Oh well, the garden was nice!

Wednesday, 3 June 2009

What happened to May???

May for me simply fell off the calendar thanks to numerous hospital trips both planned and unplanned totally knocking me out.

Thanks again particularly to Sarah and my Dad for standing by me so much through this with countless trips and visits but also thanks to Sarah's parents and the many wonderful friends back in Maidenhead who've helped look after the boys at a moment's notice.

I’ve provided some updates as to what’s happened since the last blog update back at the end of April and will provide a view of what's coming up when things have solidified a bit more.


Coinciding with my current stay at the “Hotel Radcliffe” is my ‘Work Up’ day – I am due for transplant in July but before that tomorrow (Thursday 4th June) I need to do some ECG tests, lung tests etc. to ensure I’m physically fit enough for the procedure.

There is talk too of doing a bone marrow sample but I don’t think my blood counts are enough currently to warrant that and that will probably happen next week now.

Other joys coming up will be a test radiation dose ahead the transplant procedure.


You may recall from earlier postings that infection is one of the critical things to guard against during treatment due to low-to-zero immune system. Remarkably I seemed to have protected myself against it since March but in May it all came crashing down…
• 4th-11th May
• 20th-26th May
• And now, 31st May – still here, trying to get my temperature stabilised…

All in all quite frustrating and in some instances alarming when my temperature kept climbing and I couldn’t stop shivering and shaking, but one thing that came out of it – for ages I’ve been (through my old doctor) under the misapprehension that I was allergic to Penicillin. I never used to be and it turns out that I never was! That at least makes things more manageable!

Phase 2 complete, sort of…

So where I left off was 27th April (Sarah’s birthday for which I was able to organise a present and card – thank-you Internet!!) when I was 2 weeks into Phase 2.

Basically Phase 2 seemed relatively uneventful and I seemed to be able to tolerate the awful Cyclophosphamide better for the last 2 doses. In so saying, the constant driving (and I was just the passenger!), chemo, blood & platelet transfusions really took it out of me and even the days where I didn’t feel too bad, by the time I got home I’d had enough and just wanted to spend time with Sarah and then the boys when they got home.

The last full week of treatment was 12th-15th May (just after Jake’s birthday) but the last dose of Cyclophosphamide was 18th May and that wrapped up Phase 2, the only thing is that I’ve missed a couple of lumbar punctures mainly down to unfortunately hospital problems.

I don’t get away that easily though, it’s likely they’ll give me the intra-thecals during the transplant window.