Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
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 ?
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)
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
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Just noticed for the first time that my conditioning was called FLuMelAlem30
Fludarabine D-6 to D-2
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 !!
I think daughter began using it when she was stuck in, so a few days into the chemo, around as she began Campath, but a good couple of days before Melphalan. Her main problem was not icing as much as she did for her auto, and then having throat rather than mouth problems, as she put it, she felt hungry then on the first mouthful the throat knives came out!
Its amazing how different all our experiences are and what differing advice we receive. Exeter had not heard of sucking on ice until I mentioned it courtesy of you guys and it worked a treat for me with not one sore in my mouth or throat. They now have it in their protocol and recommend it to patients, I feel like a trail blazer in sleepy Devon. I started using Defflam shortly after going in and used it after every meal and just before bed. When the bottle had gone and I’d still had no issues they said I could stop which I was happy with as I was sick of the taste of it.
Something so simple as iced lollies can result in weeks less pain, getting up to strength faster etc. Why not do anything possible?
I am assuming you were admitted yesterday for a start this morning - good luck, I hope all goes well! And a big Happy Birthday for in a couple of days!
Good morning everyone !
I had my transplant mid afternoon yesterday . It was 3 bags of bone marrow not stem cells which apparently is less common nowadays. Because my blood group is O and my donor is A I had to have four days of plasma exchange which has battered me somwhat.
Thankfully the transplant went smoothly with no reactions and I feel quite well today. I have been using the Caphasol mouthwash since the day before Malphalam and touch wood no mouth sores so far . Later on today I will have afeeding tube inserted just in case .
Great update Mark and not having had plasma exchange I can only imagine - now the waiting starts and let’s look for your mouth to not pick up any issues.
Rest up and take this time to recover.
Happy Re-Birthday, Mark, hope things go well from now on, a plasma exchange is interesting, things have moved on since daughter had her allo, then? (She went from O Rh- to A Rh+ but it took a long time for her blood group to finally change.)
first off, well done, I believe that I am heading in the same direction as you, but I'm told I'm having my own bone marrow put back, not to sure how that will go but I've got my fingers X'd.
Hope it all goes well and no mouth sores, they're dreadful.
In the end, it's not the years in your life that count. It's the life in your years. Abraham Lincoln
Good morning everyone.
Just a little update , this morning my counts are rising neutrophils 0.4 ! They are talking of maybe home at the weekend .
Its been very hard but so far I think I have come off lightly, no mouth ulcers just a little sore where I swallow which may be NG tube
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