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.