Acute lymphoblastic leukaemia

A support group for anyone affected by acute lymphoblastic leukaemia (ALL) to come together, share experiences, and ask questions.

HIGH DOSE MELPHALAN - STEM CELL TRANSPLANT FOR ALL

Shelleyyy
Posted by

Hi, I am currently in St James, Leeds undergoing a stem cell transplant for ALL. I am due to have high dose melphalan and have got a load of ice lollies sitting in the freezer. Do I start using them before, during or after the treatment ? Really really want to try to avoid as many mouth ulcers as I possibly can. Any advice appreciated.

Paul1969
Posted by

Hi Shelleyyy

Welcome to the group although sorry that you find yourself here.

When I had melphalan during my stem cell transplant conditioning I just sucked ice pops whilst it was going in.. even then I struggled with them being so cold and the brain freeze!!

I was lucky and didn’t really suffer with mouth ulcers etc following the treatment.

My mouth was just a bit tender and sore. Good luck with the rest of the conditioning and the transplant itself. My SCT for ALL was almost 6 years ago so I have to think hard to remember some of the treatments and meds. 

Any questions please ask.

Paul

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Shelleyyy
Posted by

Thanks Paul, I have just finished 5 days of Fludarabine which puts me at -3. Tomorrow starts 8hrs hydration of alemtuzumab ready for the melphalan. Day zero Thursday and start of life as I knew it hopefully (eventually). Still got a long slog ahead but it's great when I hear of someone like yourself who made it to the light at the end of the tunnel.

Shelleyyy
Posted by

Thanks Paul, I have just finished 5 days of Fludarabine which puts me at -3. Tomorrow starts 8hrs hydration of alemtuzumab ready for the melphalan. Day zero Thursday and start of life as I knew it hopefully (eventually). Still got a long slog ahead but it's great when I hear of someone like yourself who made it to the light at the end of the tunnel.

Thehighlander
Posted by

Hi , I had high dose Melphalan for my second SCT and my team made me suck on the ice lollies for 30 mins before, all through the infusion (30 mins) and for 30 mins after but everywhere is different to the point that some SCT units don’t even use the ice lollies.

Remember our SCT Forum where we have lots of folks going through the same journey as you are and folks like us who have come out the other end.

 ((hugs)) for Thursday 

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Shelleyyy
Posted by

Thanks Highlander for your reply and hugs  

Leeds don't do the ice lollies but due to this forum I took my own in and it seems to have worked a treat. Had a bad allergic reaction though to the Alemtuzumab which gave me a red raised rash andhe shakes. Looked like a red tomato on crack  . Stem cells on their way so exciting times ahead

Thehighlander
Posted by

This is good news Shelleyyy but always expect the unexpected when it comes to SCT.

I do not understand why some units don't do the ice lollies as in the long run it brings great rewards at little cost.

Keep us up to date with your re-birthday x

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela