Second tranche of Azacitadine seems to be very successful

I finished my jabs. The ones on Thursday were not nice as we hit blood vessels and nerves - so it took four goes and left bruises and highly inflamed areas across my stomach. However the evening primrose oil reduced the irritation and redness very nicely. You have to be very philosophical about jabs.

They took my bloods, and my neutrophils were 1.6, which is great. So I was able to go out for a meal with Barbara last night, I can eat salads again, go to the shops, etc.

The other big advantage of the 1.6 reading was that I could come off the daily antibiotics and anti-fungal treatment I have been on while my neutrophils were so low. The anti-fungal stuff tastes horrid and makes you feel nauseous all the time - so I feel a lot better.

No more treatment for three weeks, other than blood tests every Friday

Oh Mr Porter

I went in for an azacitadine jab on Tuesday afternoon. When I logged in with Outpatients I was told that the time had been put back from 2:00 p.m. until 4:00 p.m. Seemingly one of the nurses had rung me, but I did not get the message on my mobile phone until after I was at the hospital. We decided to wait.

All went well when I had the jab. I asked why it had been delayed.
The answer was that a hospital porter had brought it up to the ward, and had left it on a shelf without getting it signed for. The drug must be kept in a fridge, so when it was found some time later it had to be destroyed and a new batch made up. So the cost of that mistake was

• Two hour waste of my time and Barbara's
• Waste of hospital staff time - making it all up again
• Probably several hundred pounds - AZT is not cheap

The last couple of days I have felt very icky, but feel a bit better today

GCSF does its job

Well the good news is that the jab of GCSF did its job and my Neutrophils shot up to .6, which has been my 'norm' for the last 12 months. This means that I restart AZT treatment his afternoon. So I will get azacitadine jabs Thursday, Friday, and Monday through Friday next week.

So back on course, after a delay of 10 days, which is not too bad I guess
You can see on the graphs how the different blood counts varied after the first lot of AZT - shown be the vertical line around 5th August. You can also see the effect of the GCSF on the 9th August on my neutrophils. Click on the graph to zoom in

We had the blood tests down in the outpatient department on floor 6 today, which was very quick. As we had to wait, Barbara and I had a very nice bacon BAP for second breakfast.. (Guess what I have just finished reading again)

OK lets try some GCSF

Given my .neutrophils are at .1 and they need to be at least at .3 before my AZT can restart, what can be done?

Well the Consultants at Derriford and Kings had a chat and decided to give me some GCFS. This is by way of an subcutaneous injection - guess where? Well in the dartboard I used to call a stomach, which is used for all the AZT jabs. I actually do not mind too much as long as I can tell them where to do it.
 
Granulocyte colony-stimulating factor, GCSF stimulates the survival, proliferation,  and function of new neutrophils and mature ones. G-CSF stimulates the bone marrow to release granulocytes and stem cells into the blood, and hopefully up my counts

Ros had GCSF after her stem cell transplant to accelerate the production of her donor cells

If this works, by Thursday, after a blood test, I will have my next lot of AZT - for two days,  a weekend break and then five more days. If not they might try another GCFS jab on Friday and test again on Monday.

Well the good thing is I get to meet lost of nice people in the waiting area and Barbara and I play lots of Scramble (no time limit version) - a word game on the I-Phone

A second week of delays before I can have my second tranche of AZT

Well this is a pain. All my blood counts were fine except my Neutrophils again. They have halved since last week - which is a bit like saying they had gone from nearly zero, to even nearer.

If you look at the graph, then you might expect them negative next week !

So it is wait another week. Have another test. If it goes to .3 then I can start treatment again. I checked with the MDS Specialist nurse in Kings who has done loads of AZT treatments, and she says this often happens, and not to worry.

Meanwhile as I virtually have no immunity the hospital has given my anti-fungal and anti-biotics to take twice a day to stop anything I catch having an adverse effect.

Rosalind gets to Transplant day + 9 months

Ros is feeling fine, and has gone off for a holiday in Dorset for a week. They managed to get a last minute booking (i.e. they booked on Wednesday for the Saturday !)

It turns out that they are the first guests in this lovely cottage, with a swimming pool and tennis court - so they 'fell on their feet' as they say. (Who ever 'they' is)

I do expect a stick of rock when they get back

Next tranche of Azacitadine is delayed a week

I went in to Plymouth Hospital early today for a blood test, and then as long as my nuetrophils were .3 or better I was to have my next tranche of Azacitadine.

Unfortunately they were lower at .2, so I have to be even more careful and wait a week. The Consultant said I had very few Neutrophils, and what I had were not much cop! (I para-phrase slightly)

I also have a nasty rash around my neck due to being out for three hours on Sunday, in cloudy conditions. He thinks it is both a reaction to the Sun through the clouds and to the sun cream (factor 50) that I had put on. I wore a hat for the last hour. This is one of the side effects of Haemochromotosis and other things. So I am monitoring the effect of different creams - what a pain.
So the net effect is

• Go no where with crowds
• Keep out of the sun - or protect with better sun blocking clothes
• Get better sun cream
• Wait a week