Just got home after a long day out in London. Transplant planned for 4/5 weeks time, need a full health check first and one more round of Azacitadine followed by a further biopsy but looking good so far. Found out her sister doner is a 10/10 match which is great news. Still NPN1 POSITIVE and at present molecular levels are still very low which indicates ideal time to go ahead. As long as things don't get any worse, we're good to go.
It's been a long trip over the last 2.5 years but praying now all goes ahead with a positive outcome.
FULHAMBOY
So this looks like FluMelAlem30 or very close to it.
I had this as my conditioning for my second Allo SCT, now over 5 years back but my diary says:
Fludarabine 1hr D-6 to D-2 (no problems with this)
Malphalan 1hr D-1 (no problems with this)*
Alemtuzumab (Campath) short infusion D-1 (no problems with this)
1st infusion of Stem Cells D-0
2nd infusion of Stem Cells D+1 (but this was delayed until D+4)
* on the evening after I got my first Stem Cell infusion I was very sick and my heart went crazy so what take to ICU to be monitored but all was ok and got back to the unit D+3 and had my second Stem Cell infusion on D+4 then again had a reaction so back to ICU for a few days.
They think it always a reaction to the preservatives used to store the Stem Cells as it was a different type that had been used for my first Allo SCT.
Melphalan is a type of chemo therapy drug that is actually derived from Nitrogen Mustard Gas - think WWI in the trenches. This is when chemotherapy was first developed as it had a positive effect on cancer patients returning from WW1
The most sensitive and effected area in the body will be the mouth and throat so 30mins before the start of the M infusion they gave me some Paracetamol 'why the Paracetamol?' I asked 'You will find out' and also put a freezer bag full of Ice lollies on my table...... so I chain sucked these ice lollies for the 30mins before, during the M infusion that took about 30mins then was told to keep going for a further 30mins. I lost count but must have had 30.......... and the mother of all freeze brains every...... hence the Paracetamol.
Some SCT units don't give ice lollies!!!!! so just go out and get them and the ward staff will put them in the freezer until you need them.
The two weeks leading up to the M and all the way through until I got out of the unit I was using a two pack oral mouth rinse called Caphosol. So I set my phone for every 3 hours to make sure that I was doing this all day. My head consultant said that the Caphosol was rather expensive but if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to over come any bad mucositis. I did well with only one very small area developing and it was not a problem.
Once mucostis gets past a certain point the Caphosol will not be so effective so more specific anti-fungal/painkiller treatments need to be used to get the condition under control.
So what ever they give to to use, use it EVERY day as it does help.
By the time I went into have my SCT I had seen enough folks in wards with NG tubes so was on a mission not to have one for each of my SCTs and achieved it 
Hi again DCW, NG tube is a fine tube put in your nose into your stomach for liquid feeding during the times when you can’t eat….. but I did not need one as I protected my mouth well so could eat.
