Tuesday, 19 January 2010

Running hot and cold

Yesterday was a reasonably busy day - had antibiotics for the fever, red blood cells, platelets and a chest X-Ray.

Feel better after the red blood cells; am considering becoming a vampire :-) Amazing how a couple of pints of blood really lifts your energy levels!

My platelets were down to 6 yesterday - a hell of a drop from the 600 when I came in to hospital. Think it's a combination of the chemo + the infection which caused them to nose dive in the past few days. However, fortunately haven't had any nose bleeds yet which occur quite frequently when platelets are this low.

Infection feels better this morning. Yesterday I continued to go through phases of shivering and shaking and then phases of feeling like I was in tropical heat and sweating through the bed clothes. Pain in lower stomach is still there but feels better. Am alternating registering a low-ish temperature (38.0-38.1) and an ok temperature (this morning was 37.1). Headache and cough are gone so think something's working somewhere!

In the end I didn't get any Mylotarg yesterday. To give a fuller background, it was supposed to be given over two weeks ago, however, due to an issue with my insurance company not covering experimental drugs (and also not allowing me to pay separately for experimental drugs without them pulling all their cover), I have had to switch back to NHS and then pay for the drug privately.

At the Marsden, this doesn't make any difference to me (other than the food comes from the NHS kitchen instead of the private kitchen!), however it required a lot of paperwork and nobody could get this finished in time. The consultant thinks that because I am so neutropenic now, giving Mylotarg at this time might extend that period too much. Therefore Mylotarg will now be given with course 3. I'm slightly pissed off about this because the process seems to have broken down and if it had been managed and forms chased more effectively, I could have had Mylotarg last week. Anyway, there is no evidence that Mylotarg is less effective in course 3 vs course 2 so hopefully there is no disadvantage to me.

The only thing that worries me is that AML15 published positive results for Mylotarg in course 1. AML15 did test Mylotarg in course 3 but haven't published the results yet, however, it interests me why AML17 decided to give Mylotarg in course 1 instead of mixing it up between course 1 and 3 in different trial arms. I wonder if it is because AML15 unofficially found it more effective in induction. However, I'm just guessing so can't get too upset about it. Still think it's better to get Mylotarg than not get Mylotarg and if we hadn't been through all this pain in round 2, we would have had to in round 3. This is me staying positive!

That's all for now - last night I didn't end up shivering or sweating too much so that's positive. Temperature this morning is ok although feeling a little hot. Hope the antibiotics continue to keep this under control...

Now Mylotarg is out of the frame for this round, I can more clearly see the end point of this course. I anticipate my counts dropping for the next 4-5 days and then beginning to increase again; therefore as long as everything goes to plan and my bone marrow starts kicking next week, I can imagine being out of hospital by next weekend! :)

1 comment:

Shailesh said...

Hey Dude, its good that you are feelign better today.

Post a Comment