Remember to take your tablets

A bit of a boo boo 

I had my last injections of azacitidine today. Beforehand I had bloods taken, and I said to Barbara 'Do not forget to remind me to take my anti- sickness tablet'

Well we both forgot. And the nurse is supposed to ask me - but I had never forgotten before 

So a few hours after, Barbara served me a nice meal - which I just couldn't face. A few minutes later I was very sick

That will teach me to forget

Afterwards I took a tablet, two cups of weak tea, a two pieces of slightly burnt toast ( carbon absorbs grot)

I am feeling much better now

Plan A and B in action

What a shame to have to go into hospital on such a beautiful day.

Roz is doing well, having been running a ceramics project all day Monday at a local school.

I am on plan A - which is basically up the Azacitadine back to full dose each day this week and hope that gets the MDS / blasts in my bone marrow back under control. Certainly I can feel the extra effect of the chemo, as I have had to rest more than on half dose.

I also have a clinic booked for a week on Monday to see the Professor personally, at his request.

Plan B is also in action.  Today they took an extra lot of blood to enable the Anthony Nolan Trust to find a stem cell donor match, in case I need it for a bone marrow transplant.

If you want to donate stem cells it is very easy these days. Go to the Anthony Nolan website to find out how.

 http://www.anthonynolan.org/What-you-can-do/save-a-life.aspx 

Devon County Show success

We had a good day at the Devon County Show - the first show in the country

We only showed 4 sheep - two Manx and two Hebrideans

We got a second in the young rams, a second in the young ewes, and a first in the senior rams with Apollo. He then went on to beat the other males in the run off, and then to beat the top female to win Champion in our Rare Primitive breed class. He won last year as well as a one year old.

 

Apollo seen here with me and my silly sun hat

The weather was ideal - not too hot and not too cool

The die is cast for the next few weeks

I had a clinic today, and Roz came along to keep me company as short term big decision were needed, and Barbara was not feeling well.

Even though my blasts had gone up a lot, Kings had recommended no change to the amount or frequency of the chemo. My local consultant and I were not happy with this. Last time the blast got to this level they went critical a few weeks later

The dilemma 

1. Was the chemo causing the problem with the blasts? And I need to come off it!

2. Or was the dose of chemo too low now? And I need more!

Both have happened with other patients

After discussion and reviewing my previous tolerance to the chemo we have gone for a plan A.

Plan A is double the dose back to the maximum next week, for 5 days, and then monitor the effect. At some time soon I will then have another bone marrow test to monitor the blast which cannot be directly monitored by blood tests. In fact my blood test today were pretty good! Much better than a couple of weeks ago.

And then we thought " what happens if it does not work? "

There are few options for my type of MDS. There are some new experimental drugs - but we do not live near a research centre, and the NHS would not now pay for me to have that done in Kings, and Kings do not seem to take private patients from this country.

So a "plan B" would be an unrelated bone marrow transplant in Plymouth!

So we have decided to approach Anthony Nolan etc and see if there is a match stem cell / bone marrow match. This might takes weeks or months, or maybe there is no match. But if I need it we had better start looking soon, said my consultant.

The good news is that she obviously thinks that my body is capable of taking it. That having a transplant close to home and friends improves your chances of success. And Plymouth has just opened a start of the art new transplant ward, and the staff are up to speed on these more complex transplants. The downside is the lack of experience, relatively, on unrelated donor transplants with MDS - but we have a plan to gain that experience and reduce the risk. 

At the end of the day, given the amazing facilities and access to world leading protocols, surviving a transplant is mainly to do with

Not catching an infection

And not having a rejection

So we hope and expect plan A to work, but are covering ourselves with plan B.

The discussion with Kings will probably happen in a couple of weeks, to confirm, refine or change our plans

A few lessons

Do not wholly trust blood counts to monitor the affect of this specific chemo

Do have a bone marrow test regularly to get the real picture

Trust your instincts - if you feel a bit worse, it is probably because you are

Open, informed a frank discussions really pay dividends.

I am very happy with this direction, and can now get back to winning my small section of the Devon County Show sheep section. I delivered the animals this evening, set most things up and our competition starts at 2:30 tomorrow. Wish me luck.

A little progress

My consultant in Plymouth is trying to contact the Prof in Kings - but he is very busy this week.

Meanwhile she and I agreed to bring forward my next course of Azacitidine from 5 weeks gap to 4 weeks, subject to a blood test on Wednesday.

So on Monday after the Devon County Agricultural Show this Thurs / Fri and Sat ( do come if around) I will get my half dose chemo.

We will be showing two Manx and two Hebridean rare sheep. Apollo our top ram, is our best chance of winning.

Photo is of similar Manx young ewes

Bone Marrow results not brilliant

I got my results this afternoon. They showed my Blasts had gone back up to 7% diagnosed as RAEB I again, which is not good. If you remember it was when they went over 10% that i had to start treatment. So the good news is that it is not RAEB II.

The consultant in Kings recommended carrying on as before, but i will ask my local consultant if we should increase the dose a tad, reduce the time between treatments

Otherwise i have a throat virus, temperature and cold - so feeling a bit rubbish really.

We are training up two rams and shearling ewes to take to the Devon County Show next week