Hello Mavis
I wasn’t given thalidomide at the beginning as I went onto the myeloma 11 trial and was randomised to have revlimid – so thalidomide is new for me and is working very well – I’m now on my 9th cycle of it and my numbers are still going down. I’m hoping for a very long time on it! Though as you say – the thinning hair and perip…[Read more]

Hi Phil
Congratulations on 7 years – I too reached that milestone on 3rd February- it’s not all plain sailing but all the new drugs coming along make me feel very positive for us all.
Take care of yourself
Love Helen

Hi Michael
I’m really glad you are doing ok with Daratumumab, sadly I had to come off it after 3 months as my disease went wild and I’m now on thalidomide- which fortunately is working.
You are right to put your experience of it on here, it can be very helpful to know others have been there too.
Love Helen

Happy new year to you all, I’ve just been away for a few cold days in the Scottish Borders- very nice but too much eating and drinking!!
Maureen I hope Christmas for you and your family wasn’t too difficult- I can’t imagine what it is like to be alone for these occasions after so many years together. I’ve been thinking about you lots
Ma…[Read more]

Hi Andy and Mavis
I hope you are both well at the minute – I’m not too bad – recovering from a chest infection again but other than that the CTD has now dropped my light chains down to 229 from 1265; all good.
I managed a trip to Crete in November – marvellous- weather was superb and there were no crowds, like you Andy, I had immunoglobulin b…[Read more]

Hi Maureen
I’m saddened that your consultant is so negative- what’s wrong with trying to eke as much of out of life as possible- he should at least be offering the littlest rays of hope. I suppose he’s being pragmatic in that when the myeloma is aggressive it’s realistic to say that the drugs do not work as well or for as long so life is now more…[Read more]

Hi Pam
It’s nice to be hospital free for a bit – I went to France for a few days before my sct.
I’ve usually felt and looked the picture of health since I started down this road – and though I’ve had some terrifying infections I’ve recovered very well- if not quickly- it’s vital to keep checking your temperature.
I’d go for a donor transplant…[Read more]

Hi again Maureen- this is the American site so I don’t know if the drug company are able or likely to request extensions of trials outside the US – anyway asking doesn’t harm- after all ‘shy bairns get nowt’ as we say round here
Love Helen

Hi Maureen
Hope you and Ian are ok- I’ve just been looking at the clinical trials web site (clinical trials.gov) and it seems to suggest that the early access Daratumumab trial has been extended- it might be worth investigating to see if that is really the case and if Ian is eligible to go in it.
Love Helen

Hi Gerry
Has anyone suggested Pomalidomide? It’s available now? As for trials a distance away- several people I’ve met recently travel 2-3 hours to be in the trial I’m in and others- they don’t seem unduly concerned about it though they do find very tiring
Love Helen

Hi Pam
I have the P53 deletion- as I understand things it means that it’s more difficult to treat and get drug free remissions. I’ve been on almost continuous treatment since diagnosis as a result.
I had a stem cell transplant nearly 6 years ago and was on maintenance revlimid afterwards- most recently I’ve finished pomalidomide after 32…[Read more]

Hi Andy
Kefalonia eh- we still haven’t been to Greece together! I’ve been a few times but Tim isn’t very keen on hot places (redhead!) I think we might look at Italy again later in the year.
I think I’m finding the Daratumumab a bit more difficult- apparently there are very few side effects but I’m getting a few several days afterward- headache,…[Read more]

Hi Sue
I was in complete remission- no mm cells on BMT and zero light chains – this lasted about 6 months then they started to come up above normal again- took a full year after this before I started treatment again.
I too agonised over the decision but I was glad I took it.
One of my friends has been on it now for 5 years and is doing really…[Read more]

Hi Maureen
Hope Ian is still going strong
And Andy – how are you getting on? I keep reading (and enjoying) your tweets ( I’ve forgotten how to do it)
I’m ok with the Daratumumab but the light chains remain around 450 – I’m staying with the trial as stable numbers might be the best I get from it, just got to see what happens. I’m on the…[Read more]

Hi Sue
I was on the same trial back in 2011 and after transplant I was randomised to Revlimid which I took for 15 months until I relapsed. I’ve been on the various other anti myeloma drugs continuously ever since having had no remission at all.
I too had the diarrhoea problems and tiredness as side effects but all very manageable- I went to New…[Read more]

Hi Sabs – I was never on Carfilzomib, there weren’t any trials available when I needed one! Then it was refused funding- the regular story! Hope your partner gets on ok with the trial.

Hi Jan
I’m sorry to hear you are bogged down with a cold- I’ve been on GCSF and immunoglobulins for the last few months since my second bout of sepsis last year -…[Read more]

Hi Jan
– your dad sounds like my mum – she’s fitter than me!! At 90 she’s a bit forgetful and arthritic but she can really get a move on when the painkillers are working!
I’m sitting here right now having infusion 2 of cycle 2, no ill effects but it takes all day to get it given! It’s taking longer today as it’s after a bank holiday- why they…[Read more]

Well, hello everybody- I’m now 4 weeks into the Daratumumab study – bit of a reaction at the first infusion so it was given very very slowly and I had to stay overnight- second infusion wasn’t so bad and only took about 8 hours- last 2 have been on target at around 5 hours – it’s still a whole day in the hospital though – every week for 8 weeks,…[Read more]