[MrsLParticipant]

Hi Andrea,

I had my cyclophosphamide prime in March, I expected to be in hospital just one night but unfortunately got an infection so had to stay in for three days. I think the infection was unrelated to the cyclophosphamide. I had been warned my hair could fall out and it did but not straight away, it was over two weeks later. The stem cell harvest is quite straight forward, just boring and a little uncomfortable lying into the same position for several hours whilst connected to the machine.
Hope it all goes well.

Linda

[MrsLParticipant]

Thanks for your responses. I will be seeing the consultant next Thursday and will find out then exactly what the MDT have recommended. I doubt they will suggest, nor would I want, a second SCT as the first only gave me two months partial remission after the 100 day check up/recovery period.

[MrsLParticipant]

After a couple of months in remission I have just relapsed and my pp level is now just 8 but it looks like they will start treatment very soon, I find out next week. It isn’t just the pp level but if it is increasing and if it is causing other problems that seem to trigger treatment.
If you are seeing Prof Cook at Leeds you are seeing one of the best.

[MrsLParticipant]

Hi, I think this is a common problem, even water tasted horrible to me so drinking the recommended 2-3 litres a day was difficult. I found Ribena the best, the original version not the sugar free. My taste did return to normal after a few weeks.

[MrsLParticipant]

Hi, I have had 4 BMBs, the first in August 2013 to confirm diagnosis, the second in March after RCD induction treatment, the third in August 100 days post-stem cell transplant and the last this month to confirm relapse. They were given at my local hospital under local anaesthetic, the first 3 were given by a specialist nurse with another nurse holding my hand and chatting to take my mind of it, and although uncomfortable were not painful, the last was given by a doctor and was very painful. I think it just depends how much practice they get, if it hurts don’t be afraid to say so and they will top up the anaesthetic.

[MrsLParticipant]

Thanks for the replies.

Rebecca, I have looked at the posts on being down post SCT and they were very useful. Good to know I am not the only one who has felt like this and hopefully I too will be able to enjoy getting on with life soon.

Linda

[Author]

Posts