Get ready the French...

Quick update on Bastille Day seems appropriate given that one half of the stem cell infusion I'll get on Friday is from the remaining French bag.

Today is Day -3, I've had 2 TBI sessions (Total Body Irradiation) - seems OK so far other than being quite tired directly afterwards. I've also started Ciclosporin and MMF (Mycophenolate Mofetil) both immunosuppressants to help the cell infusion take when I have it on Friday (basically I need for the cord stem cells to come in and see me as the enemy and start killing off my white blood cell capability and for them to take over so that the leuakeamia is cured.

TBI and the two drugs haven't caused too much in the way of side-effects at the moment but that is very likely to change next week, hence I'm burning up my BT Openzone credits here at the hospital while I'm still in the mood to be online and blog and stuff.

Oh - and the move to the Churchill went very smoothly, the new room is very nice but as might be expected there are teething problems, most noticeably for me is the mornings as my TBI is meant to be at 08:30 but so far I have been an hour late for both.

Pictures: old empty blue room of Ward 5e versus new empty neutral room of Churchill, there was no bed or furniture when I arrived but that's taken care of now :-)

Introducing my new girlfriend Dolly...

Second day (day -7 with day 0 being cell infusion day) in hospital and last one in Ward 5E at the John Radcliffe, tomorrow the move to the Churchill hospital is a go; not sure what time exactly I'll move over, the plan is to get at least one chemo into me before going and then have the last one upon arrival as a welcome gift...

So far chemo has gone well, I think helped by being pretty "healthy" ahead of going in - ideal weight, reasonable stamina enough strength to lift up Luke...

Tomorrow will be the last day of chemo, Sunday a "rest day" and then Monday will be the start of radiotherapy, now with the advantage of just popping downstairs for treatment as opposed to being shipped back and forth from the JR to the Churchill and back by ambulance.

I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au naturel". The heparin I tweeted about is a blood thinner to help protect my liver from the radiotherapy (total body irradiation - TBI) as TBI thickens the blood. It's a slow push syringe that squirts in 1ml over the course of an hour, it's the wide pump below the blue pump. I will be hooked up (continually) to this until day +30 so I have had to get used to taking Dolly into the shower with me and everywhere else...

I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased cyclophosphamide dose I am receiving as part of chemo (the other chemo is fludarabine), this will likely stop as of next week.

Putting on loads of weight because of all the fluids, I'm getting furosemide to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.

Dolly, time for walkies...

Who shut JR???

Well it could be me - the hospital phoned have confirmed today that I should come in tomorrow (Wednesday) night to start treatment the following day (Thursday 9th July); the cord has arrived safely from the US and is being held by the National Blood Service over at the John Radcliffe.

Order of play then:

• Arrive JR Wednesday night
• Thursday chemo & heparin starts
• Saturday chemo finishes
• Saturday/Sunday - WARD 5E AT THE JR CLOSES AND TRANSFERS TO THE CHURCHILL
• Monday (13th) - radiotherapy starts, daily for 5 days
• Friday (17th) - last day of radiotherapy and stem cells (from the US & the surviving French ones) transplanted in

Even though I'm going to be in for 6 weeks at least, I'm packing light so the transfer to The Churchill is less of an ordeal, the bulk of the stuff will come over with the family on Sunday when they visit.

We had a look at the new ward at The Churchill last week when I had my line cleaned - the rooms look pretty good but mobile reception (for me at any rate) looks a bit dodgy...

Puff Daddy

Voluntarily headed off to the Churchill Hospital yesterday, as my Hickman Line hasn't been used for over a week I needed to ensure that it was still OK (or patent as the medics say) and not blocked through things like blood drying up in it etc. from lack of use.

Fortunately everything was fine as in the worse case scenario of the nurses not being able to get it working I would have to have had a new line :-(

Whilst there though I was able to find out the results of my bone marrow test from the other week - it confirmed that I was still in remission and my Philadelphia Chromosome ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)

This is thanks to the Imatinib (Glivec) tablets I take daily, however there is one uncomfortable side effect that is exacerbated by the heatwave we are having, fluid retention that is causing my feet to look like bags of jelly at the end of my legs. My feet are too swollen for shoes and it's proving difficult to get into my sandals!

I've been prescribed Furosemide which seems to be working by making me pee like a cart horse to be blunt, which is fine when at home but caused some severe difficulties when we were stuck in the M40 traffic jam I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...

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 http://scirocco2morocco.blogspot.com/ from where

"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.

Footnote:
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!

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.

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!

Pre-Transplant

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.

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.

Phase 2 - hmmm...

Phase 2 induction started last Tuesday. It's 4 days a week (Tuesday - Friday) over at the Churchill for 4 weeks and the main reason for it is to try and reduce further the presence of the leukaemia; remission doesn't mean it's gone "just" that normal cell production has resumed but the leukaemia has to be kept in check and that's the point of this consolidation.

Treatment is notionally straightforward:

• Cyclophosphamide - intravenous, fortunately only 3 times (every other week) as this one seems to really make me sick. Oh yeah and it's trying to knock out the remaining strands of hair I have...
  
• Cytosine arabinoside - intravenous, each day whilst at the hospital. On me seems to be causing a low-level nausea that anti-emetics like Ondansetron look to be controlling
  
• Mercaptopurine - tablets I take every night, seem to be OK on these
• Intra-thecal - every Wednesday :-(
  

Plus of course continuing with the tablets I was on before.

As mentioned, the Cyclophosphamide (at least I think it's that) seems to be really affecting me - not just nausea but vomiting and vertigo too (I learned that vertigo isn't actually anything specifically to do with heights but the general sensation of dizziness and head spins).

We're not quite sure what's causing it - I'm still suffering even tonight but far more manageable than when I was literally falling over from it.

Anyways - felt a bit better yesterday (Sunday) and today but not 100%. Hoping that this week is easier.

Apologies then that I've been out of touch but it was only yesterday that I fired up any form of computer as to be honest I've been lying down and sleeping as much as possible which I'm sure you understand!

As it all starts again tomorrow - I may not be online too much until the weekend again.

That was the week that was

So before it's too far a distant memory, an update on last week...

Treatment was meant to be pretty light with just Monday, Wednesday & Friday Caspofungin drips (Asparaginase jabs Monday too) planned and in theory should have been just "in & out".

Monday though proved to be quite a long day - had the jabs and the drip but a side effect of the Asparaginase is it reduces the clotting factor in the blood hence I had to have an infusion of FFP which took time as it requires ordering, thawing and of course administration. Coupled with a later than planned start anyway - it wasn't until about 18:00 that I was settled back at home and pretty tired. The upside was I was able to spend quite a bit of time with my Dad before he flew out to Mauritius.

Wednesday was quick but unfortunately accelerated owing to the news whilst we were in the hospital that Luke gashed his head at nursery and that they were taking him to hospital. Fortunately I had nearly finished with the Caspofungin, so whilst Sarah and I were both shaken up by the news we were at least able to call around for help and actually head back almost immediately. Fortunately things had sorted out by the time we got back without him having to go to Wycombe hospital (the original plan) however St. Marks did insist he got checked out at Wexham Park.
Sarah dropped me off at home as things didn't seem as drastic with Luke, plus it would be a long wait and more significantly we both thought it would be better to avoid another hospital (infection risk). Luke came home later - OK all things considered and fortunately they were able to use a bunch of steristrips rather than stitches. The strips will come off this Wednesday, we've been keeping his head dry in the interim...

Friday was a quick day thank goodness but the steroid tapering was really having an impact on me by then and to be honest it's only today that I've felt like "working" - the good news on Friday was that I was given this current week as a "week off". Except Wednesday (tomorrow) where it is planned to take a bone marrow sample to see where I am.

So that's last week - not much to blog for this week as it's supposed to be a quiet one but likely to be significant if the bone marrow analysis is finished ahead of the Easter weekend...

Steroid withdrawal

I think I may have mentioned in a previous blog that last Friday was my last full dose of steroid treatment (105mg per day for the Ops types...).

Rather than go cold turkey on it, I am now on a week of "tapering" - 60/40/30/20/10/5mg doses that will end this Sunday (the 5mg dose).

It's playing merry havoc with my system at the moment, principally in the sleep department it would seem, the effects whilst on steroids were:

• Increased appetite
• Keeps you awake
• Muscle loss(!) from biceps and quads

Now that I'm coming off of them I would expect things to change but still seem to have the appetite - talking with another Consultant yesterday, he mentioned that the fatigue I particularly felt yesterday could well have been due to the change in steroid regime.

Tomorrow I'm down to the 30mg level for a couple of days so we'll see how things go.

Treatment Progress - Day 30

So pretty much a month in - unbelievable.

This last week I would say on the whole seems to have been a good one and certainly I'm feeling brighter than last weekend (which was the last of the first round of IV chemos).

On Wednesday was the "standard" Caspofungin drip, the lovely Asparaginase injections but also the intrathecal (lumbar puncture) - although the leukaemia shouldn't make it to the Central Nervous System, chemo is applied there anyway just to make sure.

Whilst an in-patient on the ward at John Radcliffe I had one done and was given sedative that totally relaxed me, however the Day Treatment Unit isn't set up for the same procedure and I was given an "happy pill" that didn't work.

Consequently the process was pretty uncomfortable to be honest and stressful - especially as it still wasn't happening after the first two attempts.

But like they say, 3rd times a charm and I consented for them to carry on (pointless not to after all of that) and success, the problem seemed to be a particularly tough tendon in my lower back that required more force than originally planned to get the needle in.

Anyway - 'tis done until the next time for which I shall run head-first into a wall to knock myself out if needed!

Sarah, as always, was my rock and salvation and helped me focus & breathe through it which is about as much as you can do I think to try and "relax" through the procedure.

Fortunately no side effects from any of this other than a sore back of course, Thursday quiet therefore just recovering and getting rest.

Friday was meant to be a quick day (and was to be fair despite some delay at the beginning) being just Caspofungin & Asparaginase. It has been 3 weeks though since the Hickman Line went in which meant that the last stitches could come out and that was duly done - I'm now waterproof again apparently!

As well, Friday was the last day of high dose steroids and as of yesterday I've started a reduced dosage to taper me off of them by next weekend.

With the last Asparaginase jabs tomorrow, I will also be able to stop taking the Allopurinol too so things are starting to lighten up a little and I hope to get some strength and energy back.

So where am I? Well, basically I'm at the point where they want to see the blood counts come back up and the numbers to indicate that I'm ready for Phase 2 Induction (section 8.5 of the UKALL XII protocol); it says that Phase 2 should start irrespective but I believe the current thinking is dependent on white cell count.

Neuropathy & Neutropenia

There are some classic and/or well known side-effects of chemotherapy such as nausea (for which there are several excellent medications to help control this e.g. I'm taking Cyclizine & Ondansetron) and hair-loss (alopecia). So far my hair hasn't started coming out yet although I've had it shaved pretty close to make it less of a thing if/when it does (both for me and Sarah & the boys).

Two things I'm experiencing that are possibly not so well known are Neuropathy and Neutropenia.

• Neuropathy - specifically Peripheral Neuropathy. Basically as a result of the chemo, there is a constant numbness/dull "pins and needles" in my thumb and fingertips.
  It's really more of an annoyance than anything else but I do need to watch that it doesn't extend further into the hand. From a practical perspective, obviously I'm still able to type but using my phone is getting a little harder because the buttons are obviously smaller, especially on the slide out keyboard.

• Neutropenia. This one is harder as basically it means my immune defences are really low. I have to be careful what I eat (I'll blog something about that some point soon as it is very important and could be useful to others) and avoid crowded places (like hospitals I guess!) as catching and dying from infection is a genuine risk.
  This of course limits the number of people I can see currently, going out, having a curry or McDonalds(!)
  My last blood count puts me severely neutropenic but the medication I'm on is looking to stave of viral, bacterial and fungal infection and coupled with taking regular temperature checks to make sure all seems normal.

Tech Alert - OK the "gadget-boy" in me cannot control itself anymore. I really like my phone, it's an HTC S710, Windows Mobile device. I've been a huge fan of Windows Mobile right from the days when it was known as Windows CE (unfortunately shortened to WinCE).

Back in what must have been around very late 90's, I was very lucky to win a HP Jornada 540 in a competition and very quickly got introduced to a device that carried my photos, music, Outlook, e-books and notepad in a very compact and actually quite reliable form. It's interesting to see how other companies are only now at last catching up with what Microsoft was able to commercialise way back then. It would be remiss of me though not to mention the Apple Newton at this point which more than likely got the Redmond brigade on the right road.

The phone was from BT - I didn't like their customisation of Windows Mobile so burned in an upgrade that has proved ultra reliable and stable but more importantly allows me to keep in touch through SMS & mobile internet when at the hospital.

You've got a what in your chest?!?!

A tube - or more accurately a Hickman Line...

Most people probably know that I am awful with things medical (injections, having blood taken etc.) - not just having the procedures done but people talking about on themselves or sometimes in general as I have a completely irrational thing of imagining it happening to me as they speak, I know weird.

If you are a bit prone to this yourself, you may want to skip this posting.

True story - the height of my infamy on this front was probably when Alien 3 opened back in 1992. There is a scene where an autopsy is carried out on a little girl, you don't see anything but you see the prep, the tools and you hear it when the chest is being cracked open. First time I saw it no problem as I didn't know it was coming, however I ended up seeing it again with my housemates at the time and seriously, I quietly passed out in the cinema - what a nightmare!!!

So, with the amount of blood that needs to be taken to check levels, chemo going in etc. this whole thing is a bit of a nightmare and this is where the Hickman Line comes into it. Essentially it's a main line to the heart, the picture gives an idea as to how...

The procedure takes a while and a specialist team of nurses (certainly at the John Radcliffe, not sure for other hospitals) performs it in the ward.

Some people have it done with just with local anaesthetic but I know that would be beyond me to as there was an option to be sedated that 's what I did and so slept through the most of it but was awake for the final bit.

Being absolutely honest - I am still a bit freaked out about it even after a couple of weeks now and I try not to look at it, however the benefits are immense as blood is taken and drugs administered without you feeling a thing saves your arm veins getting shot to pieces.

So, I'll stop at this point as I was hoping that writing about it would make me come to terms with it a bit more but unfortunately not that much :-(

If any one has ideas as to how to get over this nonsense - leave a comment!

Phase 1 Day 20

So from the "Ph pos" flow chart in the UKALL XII posting, today is Day 20 of Induction Phase 1 and I've been over at the John Radcliffe as an out-patient last Monday & today.

We're leaving early for the hospital to beat motorway & Oxford traffic (there are major roadworks near the hospital) plus getting to the hospital car parks early because they fill up so quickly. Journey time isn't bad actually and probably comparable going to Wexham all things considered!

Monday was a "short" day as it was just taking blood for the blood counts, a reaction test to the new medication being introduced (Asparaginase) and, as there was no hypersensitivity detected, the Asparaginase shots themselves which is a delightfully stinging injection in each buttock...

Moving swiftly on to Tuesday - quiet day at home. Actually felt pretty good and broke out of the confines of the bedroom to be able to have lunch and tea downstairs - it's not all peace and quiet at home though, major building is underway for the new Holyport Manor School, below a picture from our bedroom window...


Today though was a longer as in preparation for the IV treatment on Friday, 3 units of haemoglobin plus the Caspofungin & Asparaginase. All went well though and hopefully Friday will be relatively quick - it needs to be as they start packing up that day ready for the weekend move to the new specialist cancer unit at the Churchill Hospital, more on that when I go for spikes in the bottom on Monday...

UKALL XII

Protocol 12 (XII in Roman numerals) is the current treatment regime in the UK for Acute Lymphoblastic Leukaemia (ALL), hence UKALL XII.

There are variations in UKALL XII protocol depending on being Philadelphia positive or negative, a lot of information is available at the Oxford University Clinical Trial Service Unit. Specifics around UKALL XII protocol can be found below:

• Complete description of the UKALL XII Ph+ve protocol
• Flowchart of the medication regime for UKALL XII Ph pos
  
• For completeness, the flowchart of the medication regime for UKALL XII Ph neg

NB: I am not a medical professional, these are links I found when informed that the treatment regime was probably available on the web as hard copies were not to hand at the hospital. As with anything, these documents may get obsoleted and should be treated for informational purposes only - speak to a professional if you want the latest!

Two and a half weeks in...

So blogging has been slower than expected (sorry) - mainly down to fatigue and actually finding the time between sleeping(!) and hospital.

First intravenous chemo was in hospital 28th Feb and I've had 2 more since (6th & 13th March), I'm also on oral chemo to handle the complication of the Philadelphia chromosome too.

Left the John Radcliffe as an an in-patient on the 7th March and was over at Wexham Park on Mon 9th & Wed 11th for treatment (Caspofungin) and was in Oxford again (as an out-patient) Friday 13th for IV chemo (Vincristine & Daunorubicin).

Had to go back Saturday 14th for haemoglobin transfusion (3 units) which literally took all day. I was over at the new West Wing ward (still at the John Radcliffe) for this - amazing how modern the new ward is it's actually part of Neurosciences but haematology have some beds there.

Recovering today ahead of Oxford next week (Monday, Wednesday & Friday) to supplement on some new treatment - this is all part of the UKALL XII protocol which I'll look to blog later.