Hi andy Mavis and all, good to see you at the info day andy, and great to see you are at cycle 19, I’m on 8 now. And no Allo graft in sight for me either, does this just make us very special people??
Re the info day, it was an interesting day again, even though I’ve been to several now I still learn a lot from them.
We are spending a lot of time…[Read more]

Hi Maureen
Hope Ian is back home again soon, he does seem to have an awfully bumpy ride with this disease, fingers crossed you can have an event free few weeks ro recover.
Love helen

Hi Jan and Andy
Just thought I’d update this post a bit-
I’m now on cycle 8 of pomalidomide and its still working well and I’m still feeling well, the colonoscopy was normal thankfully- Just checking I don’t have amyloidosis too!
The search for an Allo donor hasn’t found me a match, none of my sisters was better than 50% and there is one 75%…[Read more]

Hi Maureen
Hope all goes well for Ian over the next few weeks, just keep smiling and try not to worry too much.
You will need to look after yourself too, it’s a difficult treatment to watch.
Love Helen

Hi jan
You seem to be having a very stressful time, I found the time when my dad was in hospital last year very difficult as I didn’t want to expose myself to all the various bugs.. I was also relapsing so that made it even more stressful, I hope that your numbers drop now and that you are soon over the colds and he is now out. I shall keep my…[Read more]

Hi Jan
Apologies as above- life has been a bit hectic! I’ve a list of knitwear to complete now – having had so much time off with sheer fatigue. We are now in the throes of getting our holiday house sorted- it’s going to be a very long task I think! It’s great now but needs rewiring so that’s going to be very messy! Still as we are both retired…[Read more]

Hi Andy
Can’t believe how long it is since I put anything on here! Apologies for the delay- though have spent 5 weeks with flu and a week in Italy and a dreadful few days having a colonoscopy! However all over now and am on cycle 7 of pomalidomide – light chains have plateaued and bloods holding up despite infection – fingers crossed this is…[Read more]

Hi Vikki
It’s all a worry for you, I’m just hoping the revlimid does the trick- I’ve had to have a few months of gcsf to keep my bone marrow up – it seem to have worked and my bloods are low but ok still – I will keep my fingers crossed that Colin has a similar result
Love Helen

Hi Jan
I’m hoping so too, I have to speak to the transplant team again to see what they think, there are new drugs coming along but you are right , they take a very long time to get into common usage.
The moving and everything is an effort to have a bolt hole if I can’t go far away, and to find something much smaller in town. Though these things…[Read more]

Hi Vikki
I’m ok, been ‘off’ the drugs this last few days, and it’s been rough but I’m close to normal again today, hopefully it just continues to work… what options did the specialist nurse talk about for Colin? Or was she just generalising?
You are right about positive attitudes, it does keep you going.
Love Helen

Hi Andy
I’ve been having a few of those dex mornings myself recently! Have been up around 6 am half of this week! But not this weekend, I’ve felt quite grim really, I can’t work out if the Pomalidomide is cumulative in its toxicity or I’m just sickening for something else… No doubt time will tell. Anyway the drugs seem to be relatively ok and…[Read more]

Hi Maureen
We had a lovely day thanks. Ian isn’t having much luck with these drugs at the minute, when do they plan to start dtpace? I’m finding the Pomalidomide unpleasant but bearable … Igo tomorrow to see what the bloods are like… So fingers crossed it’s still working!
Love Helen

Hi Vikki
It must be very difficult to just watch and not be in control, I was so well in myself last October that when I had to restart treatment as it was so seriously worsening, I was quite shocked. Now I’m on treatment, I feel terrible, but my bloods are looking better! So it’s possible for Colin to feel bad from either cause really. If he’s on…[Read more]

Hi Vikki
Hope colin has a better couple of weeks from now, I’ve been on Revlimid and relapsed on it, then Velcade which gave me about 3 months before the numbers started rising again, then I had high dose steroids alone which did nothing at all, now I’m on Pomalidomide.
Apparently it’s not uncommon to be quite sensitive to the drugs but to get…[Read more]

Hello Mavis good to see you popping in, how are you doing? There are no trials going on here for people with relapsed/refractory myeloma, it was mentioned that if there is no matched donor, they would look for a trial and I might have to travel to London etc to take part,well its a case of ‘whatever it takes’ and we wait and see.
Andy – if they…[Read more]

Hi Ron
I too would get the antivirals as soon as possible, the earlier they start the less side effects and long term pain from post herpetic neuralgia the better. I had shingles last year, it was extremely painful and I was very unwell for a few weeks. She has my sympathy.
we are not supposed to have the vaccine, it is too dangerous.
I…[Read more]

and again!
Ali glad to hear your mum is doing ok at the minute, I’m awake late… It’s dex day today and I have numb feet, hey ho the joys of the treatment, but I’m not too bad overall, and as long as it works I will put up with it.
Hey Andy
Good work with your bloods, I’m on GCSF to keep the good guys going – so have to go every 2 weeks at the…[Read more]

Oh no half my post is missing! it went a bit like this!
Vikki, what was the outcome at the clinic? I’ve banned my other half from asking too, I’ve asked him if he has any questions and I might let him ask a pre-planned one, just so he feels included

hi Vikki And Ali
The wedding was a lovely day, bride and groom never stopped smiling, can’t really believe it happened, all those months preparation and it was over very quickly, I had to slope off for an hour or so but managed to be there until the bitter end -about 03.45! It was great- as she is a singer of choral music she had lots of her…[Read more]

Hi Andy
It was a lovely day- went by very quickly – the pair had a great day and never stopped smiling, weather was good and we all walked to church and reception. I’m a bit bored now without it to help organise.
Pomalidomide isn’t too bad – I’m surprisingly well apart from the chest infection, dreaded gut problems, slightly sore feet and…[Read more]