Stem cell transplants for blood cancers

A group for people to discuss stem cell transplants for blood cancers such as leukaemia and lymphoma. This can include transplants using a person’s own stem cells or stem cells from someone else (a donor).

SCT Late May

parkrun mark
Posted by

Good morning all

My date has finally arrived ! I am going into UHW Cardiff on the 15 th of May for my stem cell transplant.

I have a 12/12 match donor from the USA . I will be having reduced intensity chem due to my age ,62nd birthday 18th May.

I am in complete remission ,feeling great at the moment so lets hope this helps on I know could be a rocky road.

Mark

Thehighlander
Posted by

Good morning Mark , this good news in a weird sort of way lol, but this the way forward and can put your condition into long term remission.

Have your team told you the exact chemo conditioning they lan to use?

This is a thread that Moomy started a number of years back looking at things that helped when deing in the SCT Unit

https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/f/33217/t/103307

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Thehighlander
Posted by

Good morning Mark , this good news in a weird sort of way lol, but this the way forward and can put your condition into long term remission.

Have your team told you the exact chemo conditioning they lan to use? If you are having Melphalan as part of your conditioning have a look st this thread.

This is a thread that Moomy started a number of years back looking at things that helped when deing in the SCT Unit.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

HopefulMummy123
Posted by

Hi Mark

I have not long had an Auto at UHW! I was discharged in March. Have you stayed on the ward before? 

I personally found I didn't have as much info as liked before I was admitted so feel free to ask me anything that I may be able to answer! 

I hope all goes well for you

Xx

HopefulMummy123 x

HopefulMummy123
Posted by

Ah, I just read your profile and it looks as though you have more inpatient experience there than me...!! 

At least you have a better chance of remembering all of the nurses names ;-)

Best wishes

Xx

HopefulMummy123 x

parkrun mark
Posted by

Hi Mike and HopefulMummy

Thanks for the info Mike. I forgot to ask what the chemo was ,infact i forgot to ask a lot of questions !! I did ask how it compared to the Flag ida strength wise and she said similar. I can probably find out more as i have an appointment on Friday for more tests.

My blood group will change from O to A not quite sure what that involves.

HopefulMummy yes I have got to know B4 ward quite well,they are an amazing bunch of people.I was discharged the day before you so we were in at the same time !

Mark

moomy
Posted by

Hi Mark,

varying hospitals seem to use varying RIC, daughter had Fludarabine, Campath and Melphalan at the Christie. 

Fludarabine wasn’t too bad, And she felt able to escape the ward for a few hours for the first day or two, as it wasn’t till about Day -3 that they used Campath. 

She too went from O to A, and in fact Rhesus negative to positive, as far on the blood group spectrum as possible. But it took a couple of years for her group to change and all that time she had been dependant on regular transfusions. So do be prepared just in case! Her donor was German.

take care and keep posting 

hugs xxx

Moomy

HopefulMummy123
Posted by

What a coincidence!

Xx

HopefulMummy123 x

parkrun mark
Posted by

Yes its Fludarabine, Campath and Melphalan that will be my pre SCT chemo.

I also had 20 minutes of nebulised Pentamidine which is supposed to help prevent lung infections. Not very nice reminded of the only time I tried smoking my Dads Players No 6 !! 

Thehighlander
Posted by

Mark, its very important that you have a good look at the Melphalan Thread.

From our experience, some hospital just don't do the Ice Pole sucking thing 30mins before, all the way through and 30mins after the Melphalan IV.

Mouth ulcers can be a big issue and does have a knock on effect on being able to eat well and this in turn effects the mental and physical side of recovery.

I was given a two pack oral rinse called Caphosol - my head Consultant said it costs a lot of money!! But once the mucositis gets past a certain point the Caphosol will not be so effective and more specific anti-fungal/painkiller treatments need to be used to get the condition under control. 

So I set my phone to go off every three hours 7-8 times a day to make sure I did the mouth wash to the letter and even set a timer to make sure I had it in my mouth for the time required. 

I was also given Nystatin. Nystatin is an antifungal medication that fights infections caused by fungus. It is taken by mouth and used to treat yeast infections in the mouth or stomach. I had to keep it in my mouth for as long as I could then swallow it with a glass of water....... but it is rank :( I mean horrible :(……….. but if if you use all the stuff your team gives you to the letter you should be ok.

I was on Pentamidine from day 304 post second SCT every 4 weeks for 3 months, its the most disgusting thing ever but very effective at protecting the lungs. It was used to give me a break from taking Co-Trimoxazole (Septrin)

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Thehighlander
Posted by

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

HopefulMummy123
Posted by

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!

Xx

HopefulMummy123 x

parkrun mark
Posted by

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

HopefulMummy123
Posted by

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...

Xx

HopefulMummy123 x

markyflem
Posted by

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.