Hi - just joined the online community...and this group.

Hi again  and well done navigating across to our little corner.

First a few questions if you don’t mind:

What exact type of T-Cell NHL do you have?

What treatments did you have leading up to SCT?

What type of SCT are you having Auto your own cells or Allo donor cells?

And what conditioning did you have to take your immune system down?

Hi Mike.

Sorry, don't recall the exact type of T-cell lymphoma - got letter back in mid-december with details and to be honest haven't looked at it since. Remember being told its much rarer than B-cell type an a lot more aggressive.

Treatments prior to SCT - 6 cycles of chemo every 3 weeks from 712/20 to 23/3/21. Ist cycle was CHOEP but did not react well to the Etoposide so that was removed and so 5 cycles of CHOP.

SCT type = auto

Currently having conditioning - thats what I meant by being on my 2nd day of SCT - in my mind its all one thing, the conditioning and the actual stem cell infussion. Can't recall the exact regime name but had /will have:

Lomustine tablets yesterday - 9 in one go!

Cytarabine today (twice) and for the next 3 days

Etoposide today (once) for next 3 days

Melphalan day in 4 days time

Then the next day stem cell (re)-infusion.

Well done remember this amount it can be brain fuzz.

I had FluMelAlem30 a version of BEAM and LEAM for my second, the main thing is the M (Melphalan) as it is a horrible drug so some care has to be taken.

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.

Ive read about taking the ice-lollies, not sure they do that here anyway - but whats the rational of them?

Ok so you do need to understand that your mouth and throat are one of the most delicate and easily effected areas of the body by the M.... think taking very hot food all the time for 30mins!!

Melphalan is a type of chemo therapy that is actually derived from the original Nitrogen Mustard Gas - yes think WW1 and the trenches.

Over the years it has been found the the ice effect mostly removes the effects of the M on your mouth and throat and I basically had no issues and was able to eat all the way through most of my treatment.

Once mucostis takes hold you stop eating so you end up with a feeding tube down your nose