Hi Tina
Good to know things are progressing nicely, where are you off to on holiday? I hope the weather is good.
Love Helen

Hi All
I'm not sure there is anything else I can add to this debate, as Eve has said, I am in a different group to Dai in that I have had Revlimid as a newly diagnosed patient.
Much of the research into these drugs is new, ongoing and not yet quantified, some people relapse quickly and there is no way of knowing yet who those people are. There…[Read more]

Dear Mari
That is good news and the holiday is a lovely bonus, have a good rest and enjoy it.
Love Helen

Hi Mari ad Ali
Watching and waiting is very hard, I do hope you make it to holiday Mari.

Ali, is your mum back on Clexane now? If she thinks there is another clot she shouldn't really hang about, get her to ring the hospital for advice.
I shaved my own hair off, I caught sight of my thinning locks in the mirror and the clippers were in the…[Read more]

Hi Eve and Keith and Amelie
I have been only treated with revlimid, cyclophosphamide and dexamethasone as primary induction, part of the myeloma xi trial which is comparing current best treatment with new ones. I spent 5 days deciding which would be my best option in that raw stage between diagnosis and treatment start. I cried a lot, it was a…[Read more]

Hi Amelie
The Revlimid marketing application has been pulled from Europe as the Authorities asked for " more mature data " to be presented before a decision could be made on its safety. Ergo more research needs to be done. As part of the myeloma xi trial, revlimid is used as primary treatment and as maintenance, this is still the only way it…[Read more]

Dear Etta
As Mari says, ramble away, I'm one of 4 girls and all my sisters are all close, I'd be devastated if anything happened to any of them, so you have every right to feel right down in the dumps, not least because of the stage you are in your treatment also. Life is so unfair sometimes.
I had a whinge and moan yesterday for no real reason…[Read more]

Hi Trish
All conflicting info, I suggest you ask your consultant as there are probably different local rules.

I'm told that if you have auto SCT, the cells put back include lots of our other white cells including antibodies from previous vaccinations, which still carry the blueprint of our previous immunity, therefore there is no need to…[Read more]

Hi Andy
Hope all goes well later today, and yep getting shot of the catheter is a very sound goal, not comfortable. Do you have sensory loss too with your back?

I had Revlimid, cyclophos and dex as my induction therapy, I made sure I took anti sickness tablets an hour before the cyclophos and then regularly for 48 – 72 hours after, i rested a…[Read more]

Hi Alison
Shame about the flying for your mum but she' ll be pleased to get anywhere, I know I was!
Work is ok, I'm working my way through thousands of emails and planning my retraining, that should take til about September, what with the gradual return and all. I'm shockingly tired as expected. But the diversion from being at home is good,…[Read more]

Lovely videos Tom 🙂

Hi Dai
Well yes, only cast iron numbers and in large numbers is medical research measured, but as Keith says and as a nursing observation, better health and the positivity that goes with it often gives better outcomes, for complex reasons. But Dai your numbers are fluctuating in the same plane, not rising, so I'll keep my fingers crossed that…[Read more]

Hi Ali
What a relief, it took me 4 hours on first day then 2 hours on second day so your mum did well to do it all at once. Another hurdle out of the way, now have a really good few weeks of rest, holiday and put lots of weight on, ( mum, not you 🙂 ) so she has good reserves for transplant, no need to eat much afterwards means you can…[Read more]

Hi Mari
Can't help on the Plerixafor, I had double doses of Granocyte, which made me feel shocking but yielded the results. Hope it works though and you get good news tomorrow.
Love Helen

Hang on in there Keith, hope it keeps doing the trick.
Love Helen

Hey good luck Tom let us know how it goes
Love Helen

Whoa that's clever, Tom, I confess to being a complete idiot when it comes to IT, In fact I don't really know what you are talking about:-P I spent today trying to remember how to use a PC having used an iPad for the last year.!!
Love Helen

Hi Keith
Sorry to hear about the continued gut troubles, it really is a pain in the 'wotsit', I have got used to it now and having had a break for two weeks, I know it is a problem that I've got used to now, after 8 cycles.
Anyway, the steroids, get on the blower to the consultant in the morning, I'm with Dai here check out that dose with the…[Read more]

How did you do that Tom,? Thqnk you And that was an early pint!
Love Helen

Dear Dai
Hmm yes I read the email replies and was about to respond, but I too can only see them idividually, anyway, thanks for your very amusing reply;-) I'll hunt out the whoopee cushion, nice new photo by the way.
Vicki, Teresa, Tom, Ali, Jean and Eve, thanks for your kind words, I hope tomorrow is as straightforward!
I've only booked the…[Read more]