To anyone who has stem cell transplant preceded by high-dose melphalan - I had this at the end of September, and had been advised by an acquaintance to chew ice for 30 minutes prior to the melphalan infusion, during the infusion, and for 30 minutes after. So I asked the nurses for buckets of chipped ice and did so. It was tough on the second day of infusion due to the nausea I was experiencing, but I forced myself and am so glad I did. I had absolutely no sores in my mouth or esophagus. The hospital where I was treated had been discussing the potential merits of this just the week before, so they were curious to see my results. I understand they will now recommend this to all SCT patients.
This is a small thing to do with minimal discomfort (very cold mouth for an hour, and if you become nauseous from the melphalan, it's tough to swallow all that cold, melted ice on Day Two infusion), but the potential benefits are huge.
I am doing really well following transplant, 2 days later I was riding the exercise bike in my hospital room for 10 minutes/day, within 3 weeks I was back home and walking 3-4 miles daily and after 7 weeks I've recovered enough to start consolidation chemo. It wasn't a walk in the park, but then it wasn't nearly so difficult as I had thought it would be. Don't be daunted, you can do this!
100% correct, I had the stem cell in January. Only had one high dose of melphalan and I crewed on ice for about 1 hour before until an hour after. I had no sores aside from where I bit my cheek. I was back to work within 2 weeks and have done well for most of the time since. Be careful with respritory infections, a cold can become very serious over night. No matter how good you feel do not let your guard down, remember it takes a child many years to gain immunity to all viruses. I had a heart issue show up due to the transplant, A flutter started because of the transplant, it is an electrical issue that is pretty common. They reset my heart and it seemed to fix the issue until I caught a cold(6months later) and it became bronchitis at which time the a fib came back and I spent 3 days in the hospital. I have been back on aggressive maintenance therapy since about March and have seen outstanding results
I was diagnosed with gig myeloma 5 years ago which fairly rapidly went to stage 2 my para protein levelled hit 69percent and I was started on velcade this reduced my counts eventually to 26percent but also caused neuropathy in both legs thankfully the pain has fast lay reduce I am now on my 3rdcycle of Raevlimid my counts are now 26 down from 38
This is good information. I am in the process of being scheduled for the transplant sometime late Jan or early Feb and am trying to catch up on all the information I can.
Just had transplant Nov . 16th. .2013 …The ice works. …I had no mouth sores, maybe one or two blisters inside the cheek. An hour eating ice sure beats a mouthful of blisters…
Good Luck…