Sct next week

Hi Sarah2022

That regime was the same as my wife had back in August last year. She coped really well tbh apart from large patches of her stomach and back coming out in what can only be described as looking like burns, these were not itchy or painful but unsightly. There's surprisingly went away completely within about 2 hours after being given Piriton. The ciclosporin tablets,as you say are not great but my wife's tip is to ensure you swallow the tablets quickly and with water, maybe have some squash or something else to chase down after.

She was lucky enough to be given the ice pops by the ward staff after the treatment and only suffered a small ulcer on her tongue.

Wishing you all the best.

Hi Sarah2022 and welcome to our little corner of the community but sorry to hear you are on the SCT rollercoaster.

I had a slightly different conditioning (hit my community name for my story) but the main drug the ice pops are for is the Melphalan.

I received the M the day before I got my donor cells. 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 30-40mins then was told to keep going for a further 30mins. 

I lost count but must have had but what I do remembers was the mother of all freeze brains every...... hence the Paracetamol.

You do also need to be very strict in talking all the mouth care meds that you are given.

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.

Cyclosporin (Immunosuppressant) is not great. Initially I was on IV for it but its bad for closing up your central line so they do tend to move you onto oral. It smells disgusting - sorry.

The funny thing is I had no problems taking the Cylosporin following my first Allo (June 2014)....... but it was a different story after my second Allo (Oct 2015). I think I was so ill that just the anticipation was enough to make me feel sick but most of the times I was not sick. I used to talk them with carbonated water, it worked for me but others mat have some other ideas.

I was told about the carbonated water by a Palliative care nurse, the fizz tricks the nerves in the throat and helps!!!!!

What hopital are you having your SCT?

Thanks - good to hear. 

Thank you - very useful. I'm going to Southampton

There have been a few treated at Southhampton so lets see if they are still looking in ((hugs))

Just to let you know I'm on Day +14 after allo sct and my neutrophils today registered at 0.2. . The ice pops worked too as my mouth hasn't been too bad

Hi Sarah2022

Pleased to hear your doing well and the ice pops helped you out. Good news your neuts are starting to re over and you can look forward to going home.

There's a long long road ahead but hey, you've done great, fingers crossed you continue tocrecover well and hope your home soon.

Fulhamboy 

Nick.

Great news Sarah, it will all be a blur as there is so much build up but day +14 and no serious mouth issues - well done you.