Hi John
I had revlimid last year with dex and cyclophos as induction and now rev alone as maintenance, I worked all through the first lot but it got more difficult as time went on as it has a cumulative effect, and I was so tired i was really glad to stop for the sct! Latterly it has caused great trouble with my guts so I had a 3 week break and…[Read more]

Hi Dai
Glad to hear you are improving, now …. Which event was it that you were taking part in……..
Love Helen

Hi Wendy
I can't help here other than to say that they look for an upward trend over a period of time and that some fluctuation is not uncommon, however if I was you I'd be wondering if I should be an ostrich and carry on, or should I plead with my consultant for earlier testing, even if the tests are expensive, what price is knowing where you…[Read more]

Hi Eve
It's good to hear you so chirpy and that Slim is now travelling in the right direction, have to get those holiday brochures out now.
Love Helen

I am so sorry to hear about Peter, I cant imagine how you are coping but at least he is no longer suffering and was at home surrounded by his loved ones.
Love Wendy

Hi Andy
Hope it all goes well, I'm still up for coffee if you want to meet up.
Love Helen

Hi Ali
I think day 1 is the day after stem cell return though it feels as though you should go from the melphalan day as that is the serious chemo. I was ok but nauseous and sick for the first 3 days but deteriorated after that. I didn't want anyone to see me so ill so banned all but a few visitors, no one with any colds or coughs or children was…[Read more]

Dear Teresa
I am so sorry to hear about Peter, how unbearably sad for you all. How have you all been coping over the last few days? Your life must feel quite empty after such a concentrated few months of intensive care. I wish I could help, I send you a big cyber hug )(
Love Helen

Hi Eve
so pleased that Slim is picking up and getting better from his SCT. I started to feel alot better around the two months mark and apart from lots of colds and coughs feel back to normal (whatever that is) now (11 mths post transplant)

Wendy

Ha ha Andy
Love the soap box moments, I have them frequently!
Love Helen

Hi Charlie
You don't always feel terrible, I worked through the initial chemo and was very tired but I found the distraction helpful. I then went off sick just before my SCT. I managed to go on holiday to France just after stem cell collection, and despite having a very rough ride after SCT, I have had a week in Cornwall 3 months after SCT and…[Read more]

Hi Vicki
Yes GCSF is cumulative, but some people are slower than others at mobilising, its all about individuality again. They will just keep going until his cd34 is high enough to start collecting, might even give him the magic mobozil that Steve had last week, they won't give up, just ask Dai about long drawn out collections!
Keep your chin…[Read more]

Hi Charlie
Welcome! I'm on the myeloma xi trial, I started it nearly 18 months ago, on the revlimid, cyclophosphamide and dexamethasone arm, I was 56 when diagnosed. I had 4 cycles of the induction chemo, then went into complete remission, had SCT and then was randomised to receive the Revlimid as maintenance therapy. I'm on my 9th cycle now. I…[Read more]

Hi Paul
Got my fingers crossed that all goes well for you, good luck
Love Helen

Hi Vicki
I think, like everything about this illness, that it is not possible to predict how each individual will be in any given circumstance, so it's best to take each situation as it comes and not build up your hopes too much. As I live so close to our hospital I was going to be almost a day case patient, in and out on alternate days, as it…[Read more]

Dear Sue
How very sad and sudden a loss for you, you will still be reeling. As Eve has said, I do hope that you had some peaceful, quality time that you can gain solace from.
Love Helen

Hi Eve
Yes I understand, but it's no less horrifying to hear that you have gone on all this time without an expert nurse to contact. Mine is available by phone or email. You are right in saying that I am spoilt, I'm only a mile from a tertiary centre, so it's only a 2 minute run to the experts, for which I'm very grateful now.
Love…

Hi Eve
It is hard to believe that a place like kings does not have a designated trials nurse or liaison person to answer all your questions. You said I was in a privileged position here because I work in the hospital, but actually, I work in the university so whilst I understand the system I didn't know anyone in it until I got here, and I didn't…[Read more]

Hi Vicki
I hope all goes well for Colin next week, the GCSF made me fell as though I'd been kicked in the chest by a horse sometimes, especially when rising from the sofa, 😛 But harvest was straight forward, then I took three weeks to feel well again. I had my transplant 15th- 17th August last year.
Stephen, you seem to have done remarkably…[Read more]