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).

Cyclosporine when home

parkrun mark
Posted by

Just wondering how everyone got on with the oral cyclosporin when they got home,nausea etc ?

Mark

Thehighlander
Posted by

Days 196 before my Cyclosporine was stopped...... as I had some GvHD.

They are not great to take but I was never sick with them. But felt sick every time I looked at them. I found taking them with some sparkling drink helped get them down as they are big and taste disgusting - sorry

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

homealone
Posted by

My nausea continued for quite a while, I was still loosing weight 9 months after I came home as I was eating so little. However I don't know if I can blame the cyclosporine - I put it down as a ongoing reaction to the chemo drugs.

Tessa

moomy
Posted by

Daughter had hers in liquid form as she’s not good with tablets (combination of whooping cough when a tiny baby and radiotherapy to mediastinum) and used a strong black currant drink with fizzy water to mix it with but it still tasted disgusting and she can’t now face black currant drink or fizzy water!

hope you manage, it may be you need a way of disguising it as she did, but make sure it’s something you can afford to never have again!

Hugs xxx 

Moomy

Alzjunkyard
Posted by

Me too, Tessa.

~Alissa 

Paul1969
Posted by

Hi Mark

I ended up being on cyclosporine for 3 years.. firstly for about 100 days then a break of about 12 months and then another 19 months. To be honest I found it much better than the IV version.

Sure the taste wasn't great but it wasn't that bad. To begin with I just asked for lower dose tablets so they were easier to swallow but after a while I just got on with it. I didn't get any nausea with the oral tablets but the IV made me feel rough so I got off the IV asap after the transplant (about 4 days from memory)

I just used to knock them back with what ever I happened to be drinking which ranged from water, fruit juice and even some red wine in the evenings after the first year!

I guess it is like all meds.. some you get on fine with and others you don't. See how it goes and find out what works for you.

Good luck and hopefully you will just be on them for around 100 days and wont need o go back on them!

Paul

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