D+15 months - "News" *

In effect 'no news', the BM Biopsy last week consisted of bone and little else, no bone marrow so no result.  I'm not sure if this is a reprieve or merely a stay of execution.  The platelets and haemoglobin have both fallen a little further, the chimerism is the same.

Prof brought up the subject of a relapse again saying this was the thing he was concerned about. The result is a platelet transfusion and a repeat BM Aspirate and BM Biopsy next Tuesday.  If the Aspirate is successful their will be a preliminary result this time next week, if not a result in two weeks all being well assuming they find some bone marrow - more waiting - grrrr!

The steroids have been reduce yet again and the Prednisolone might be stopped in a week's time - a year after starting them.  That still leaves me taking the less toxic steroid, Budesonide.

Earlier this week we had two days in York with our granddaughter Eden and had a visit from Alexi & Lucy who came down from Newcastle for the evening.  We had a lovely night with them.

The previous evening we had supper with some old friends who had called in to see us a couple of times earlier in the year.  Eden kept us entertained all evening.

* Dire Straits - "Communique" track 2

D+14 months - "Let It Bleed" *

Part 1 - Tuesday 18th was Bone Marrow day....
.... and turned out to be a long day.  The platelets had fallen yet again, from 21 to 16 in the previous five days. They had two attempts at a Bone Marrow Aspirate in the morning but couldn't get anything out at all, what is called a 'dry tap'.

Over lunchtime, as planned, I was put on a nebuliser for Salbutamol and then an antibiotic, Pentamidine.

Meanwhile it was decided that I should have a BM Biopsy that same afternoon.  This involves a larger needle and the idea is to remove a core of bone marrow and bone.  A very experienced senior registrar who is a few months short of his first consultant post did the deed.  He was really excellent and didn't 'pin me to the wall' as my consultant had suggested might be the case!  It wasn't really very different to a BM Aspirate, brief pain only.  He tried an Aspirate first but this was another 'dry tap' so used the larger needle for a BMB which was successful thank goodness.  I now have four new holes in my backside and a little soreness to remind me what 's been going on!

A BM Biopsy is used to look at the structure of the bone marrow.  An Aspirate looks at the content.  So now it's a question of waiting for a result and keeping a close eye on the platelet level. The next clinic appointment is Thursday 20th and hopefully someone will have done the microscopy to see what is happening.  At the very least this will rule in or rule out various possibilities but may well not give a definitive answer.  The other tests on the BMB core sample will take a week or two.

Part 2 - Thursday 20th BM Transplant Clinic....
... but no results from the BMB.  The transfer of cells from the biopsy sample to a microscope slide didn't produce enough cells to interpret it.  There is a multidisciplinary meeting between the lab people and haematology next Wednesday so there will be a result when we go to clinic next Thursday.  The Cytogenetics will take a week or two after that.

Unfortunately the Haemoglobin has fallen back to 115.  The Chimerism in the blood which was 100% for a long time has fallen over the past month to 91%.  This is the mixture of donor cells and my original cells, the higher the percentage the better.  The platelets are unchanged at 16.  This all suggests that the bone marrow graft is struggling.  Whilst we are waiting for the results the steroids are being gradually reduced since they are suppressing the bone marrow graft and I'm to restart EPO injections to boost my haemoglobin.

The important question is why is the bone marrow struggling?  The answer could be anything from 'don't know' to infection to drugs to a full blown relapse.  Speculation is useless but pretty hard to avoid.

To this end Karine and I are away for a short break with our granddaughter Eden in the next few days so that will be a good distraction from the above.  She will keep us busy!  She is always full of enthusiasm and fun.  We took her round the National Tramway Museum yesterday and we all had a great time riding on trams and looking at all the old trams in the various exhibition halls.

* Rolling Stones "Let It Bleed" - track 5 off the album of the same name

D+14 months - "Ballad of a Thin Man" *

Well, my platelets have fallen yet again (21) so I'm booked for a Bone Marrow Aspirate in 4 days time (Tuesday18th) to see what's going on.  If that doesn't show anything then they may consider a Bone Marrow Biopsy (BMB) which involves taking a sample of pelvic bone as well as bone marrow. My consultant who is not prone to hyperbole said that they 'pin you to the wall' for a BMB - I've never been pinned to a wall before - doesn't sound much like fun!

The best news is that I've finally stopped Ciclosporin, the rather toxic immunosuppressant that I've been on since the middle of last year.  As long as my insides behave then I'll not need it again.  My weight remains stable but about 4kg (9lbs) below my pre-leukaemia weight - definitely 'a Thin Man'.

My folic acid level is a little low so as one tablet stops another one starts.  After a year on a pregnancy diet (is that a record?) I'm now on tablets used before conception and during pregnancy. I know my new immune is female but I didn't realise the full consequences of this fact.

Karine rightly suggested I postpone an allergy clinic appointment because of the low platelets.  I used to be allergic to shellfish but might have lost this allergy since the transplant and this appointment was to determine whether I am still allergic or not.  At the moment this not a high priority and the skin testing could cause bruising and bleeding.  I bruise more and more easily the longer the steroids continue and the lower the platelets fall.

I've got the go ahead for my next lot of infant immunisations and a flu jab.  One of the antibiotics I regularly take has been stopped because it occasionally causes low platelets.  In its place I have to have a monthly nebulised antibiotic in the Haematology Day Case Unit - trying to get away from the haematology department seems to be a lost cause at the moment.


Bob Dylan (Nobel Laureate) - "Highway 61 Revisited", track 5

D+14 months - "It's Alright Ma (I'm Only Bleeding)" *

As a child I was taught it was rude to count but it seems doctors are excused this restriction.  Full Blood Counts keep coming back with some funny numbers, platelets down to 26 (a few weeks ago they were over 50 and they should be over 150) and haemoglobin has fallen back a bit since stopping the EPO injections.  The result of the low platelets is multiple little bruises especially on the arms, rather unsightly but painless.

Fortunately the GvHD has been behaving itself in the last two weeks despite reducing the Ciclosporin from 30mg twice daily down to 20mg and now 10mg twice daily as of yesterday.  The plan is to stop it later this month all being well - this is exactly a year later than originally planned!  This time last year it was planned to stop Ciclosporin by the end of October, then GvHD reared its head and everything changed, especially my weight!

It's back to clinic next week to recheck the platelets.  So much for breaking free of the hospital and being seen less frequently, I keep being pulled back, just like the leader of a certain right wing party!  I'm not complaining though, it's the right decision and there haven't been any 'altercations' over this!

The walk in Derbyshire has now raised £1,600.26 with possibly a little bit more still to come.  As soon as the money comes through from JustGiving we will present the Nottingham Leukaemia Appeal with a cheque.

* Bob Dylan - "Bringing It All Back Home" 1965 - track 10