SCT Late May

I hope you don't mind me adding -

Cardiff do not offer ice lollies routinely during Melphalan so you will have to ask! Most of the nurses hadn't heard of icing, but were happy to bring ice lollies when asked if I buzzed! Lots in the freezer already, as you may know!

Also, Caphosol isn't something offered by them either but I found it very good too. I purchased and took my own. They were happy for the pharmacist to add it to my chart under 'as needed' and were intrigued every ward round to see how my mouth was doing!

Hi Folks

Once again thanks for the great advice.

HopefulMummy did you know before you went to Cardiff that they did not use Calphasol ?  Where did you buy the Calphasol ?

Thanks again 

Mark

Yes I asked them during one of my test appointments and the nurse hadn't heard of it. It took me a lot of chasing to find someone that had heard of it and could tell me whether or not I could bring it with me. Their 'go-to' was the general alcohol chemo mouthwash (can't remember name but you must have some - comes in original or spearmint??!) and they told me they will only prescribe other things if you encounter problems. 

I believe I bought the Caphosol from 'Pharmacy First'. I managed to over estimate and brought a box and a half home! But it was better to have too much than too little perhaps...

I was given  Difflam by the hospital and got thoroughly sick of the taste of it after only a few days. It made my mouth go numb.  

I have ordered a weeks supply of Caphasol , not sure when i should start using it as the Melphalan starts on the last day of the chemo ?

Morning!

I started from the first day of chemo and continued until my counts started to come up. So for me this was 19  days (7 days conditioning and 12 days until counts up/discharge)

I used it a bit less each day than Highlander though and was about 4/5 times a day. I used 2 1/2 boxes. 

(I had BEAM and Melphalan was on the sixth day so I started using it it prior)

Hi Mark

Just checked my Protocol for SCT number two and I started using the Caphasol on day T-7 and went on until about day T+9

Just noticed for the first time that my conditioning was called FLuMelAlem30

Fludarabine D-6 to D-2

Melphalan D-1

Alemtuzumab D-1

The year before during my conditioning for my first Allo SCT I had 10 sessions of TBI (Total Body Irradiation) when all my Lymph-nodes and Bone Marrow were blasted with radiotherapy....... my consultant said..... “we are using this method to jet wash out your Lymph-nodes and Bone Marrow and the effects of this will last for a number of years” and indeed was seen as part of my conditioning for Allo number two.

During the year between my two Allo’s my skin was starting to show signs of Lymphoma activity they also spot zapped all the areas on my skin with 30 radiotherapy sessions...... hence the years of infections as my system took so long to recover.

The wonders of the medical world.

Looks like I should have ordered two weeks supply !!