Hi Roger

I do think it is much harder for those around us who care about us than it is for the patient her/himself. I hope you know that you can also access support from the specialist nurses, MacMillan and Myeloma UK as her son.

Please do try not to worry – no use you being sick too!

Could you maybe go with her to the consultation? I've…[Read more]

Hi Carol

I am also on the Myeloma XI trial. I had RCD for the initial treatment and am currently in hospital, having had the high dose Melphalan on Weds and my own stem cells transplanted yesterday. And yes, they gave me ice to suck for 10 minutes prior, during and 10 minutes after. so far, no mouth pain, just a bit dry and weird tasting, but…[Read more]

Hi again Amelie

I just re-read my earlier post to you and realised that I came across quite harsh. So I just wanted to apologise if my comments upset you. I just wanted to be sure you would get sound, reliable medical answers. But I do realise that sometimes we just need to rant and be heard and acknowledged.

I hope you're getting the…[Read more]

Hi Helen

Sorry for not responding sooner. I didn't just sit at home – I went for a picnic on Monday, cycling on Tuesday and a walk in the sun on Weds morning.

But yes, I waited and called at various times and finally went in on Wednesday at 2pm. They started the chemotherapy that afternoon, so it was only delayed by one and half days, but it…[Read more]

Ahhhh… thanks Dai! Me too! 🙂

Hi Helen

As Dai says, I'm just ahead of you and I have to say I was only slightly wiped out for a few days. Compared to being on Revlimid and the month I was ill with hypercalcaemia prior to diagnosis, it was a breeze.

Glad to hear you're much improved. I found the last few weeks (post-collection and pre-transplant) great – loads of energy,…[Read more]

Please Amelie – don't ask these sorts of medical questions here – please speak to the consultant or a haematology nurse. I don't know where you are, but in Nottingham, we are given a phone no. bleep and pager to contact a specialist nurse or the Day Case nurses at any time. Use them – that's what they're there for.

On re-reading your post, I…[Read more]

Wow! Just checked in and am very touched by the above comments. Thank you all!

I was supposed to go in on Monday afternoon, after a morning line flush and consultation with the lovely Dr Jenny Byrne, but there was no bed available. That was fine with me – I felt like I'd had a stay of execution and went out into Derbyshire with a picnic to…[Read more]

Eliz Ellen – that's a great idea! Thanks for posting. x

I felt exactly the same about the numerous tablets. I counted them up and on the first day of the cycle, the maximum was 45, but I've seen other people post on here with more. 🙂

If it's helpful, I'm writing a blog about my experience, living with myeloma: jetblackliving.wordpress.com. There is one early post entitled 45! which even includes a…[Read more]

Hi Ivan

Crying is a very good thing. It relieves the body of stress. I cry most days. But I also do other things too.

Everyone with myeloma seems to have it differently, there are different types of the disease, different add-on problems and different medications, so it's rare to find someone who has it the same as you do, but from my own…[Read more]

Thanks CN! Superbly succinct response. 🙂

Hi Debs

Where are you at with the STC? Are you undergoing it right now? I do hope it's going well for you.
My thoughts are with you.

Jet x

Hi Phil

Thanks for responding. It's so good to hear a number of experiences. Yours sounds more like the one my specialist nurse mentioned, which I think may be more common than Min's partner, Peter. Ho hum…

I'm also on the Myeloma XI trial and to be honest, I'm more worried about being randomised to take Revlimid after the SCT than the SCT…[Read more]

Thanks Mavis

I really appreciate your compliments. And don't worry about the blog, it'll probably be my main activity while I'm so tired, unless I feel too awful to write.

Jet x

Hi Clara

What I've been told, even at the worst really doesn't sound too bad – a few days of POSSIBLY feeling really lousy, plus a few weeks of tiredness and some months of being careful and quite tired, to get a possible extra 5-10 years. Well, I'm already easily tired and back-achey and I had a month (pre-diagnosis) of feeling really lousy…[Read more]

Thanks Min, Clara and everyone for the positive comments about my bald head. I really like it… who knows, maybe I'll keep it that way for while. Just wish the weather would improve enough to need the sun cream instead of a hat. Brrr…

Alos, thanks for clarifying about the GCSF injections. They don't bother me at all and my friend is now…[Read more]

Thanks Bridget, especially for the top tip!
I'll let you all know how I get on, when I'm to it. x

Thank you Min.

Your message is also very helpful. It just shows, between Peter and Lorraine, how very different the experience can be.

I've been told they'll give me ice, but I may try and ask for the mouthwash that Lorraine mentioned too. As for not eating grapefruit – no problem there – I don't like them. 🙂 Seriously though, I generally…[Read more]

Yeah, me too!
Thanks for asking, Debs. 🙂