Hi Sandra

When I was first being told about the disease and treatment, including stem cell transplant, my girlfriend asked about donor transplant… like you, more out of curiosity than anything.

We were told that the risk of rejection of a donor transplant means that they rarely take that route, especially as they generally get a good…[Read more]

Hi Amanda

In response to your concerns, I would say, like everyone above, that this condition is so individual, no one will have the same experience as your mum, but I thought I'd add my own experience as a counter to your mum's. I'll leave it to you to decide which you prefer. But I do understand your sense of impotence. Like others, I would…[Read more]

That's a bit rubbish, Gaye!

Funny, isn't it, that doctors concern themselves about patient compliance… taking tablets at the right times, right days, right amounts… understandable with the strange variations of when and how much we each take of all the different sweeties… Too bad the pharmacy compliance isn't better, eh?

On a similar…[Read more]

When I started treatment, I was given what feels like very informed advice from my specialist nurse…

Dex early and Revlimid late.

Dex makes me hyper and insomniac, even taking it early morning, but it's an interesting time… I get to think, read or catch up on emails and blog posting. Not having a job, kids or any other responsibilities,…[Read more]

Hi Nigel

Just a quick response to your post… not that any of us can ever really answer each other's questions…

I was diagnosed on 4 Feb this year and am in treatment – on the Myeloma XI clinical trial, taking Revlimid, Chemo and Dexamethasone and en route to a probable stem cell transplant later this year.

A couple of weeks ago, a…[Read more]

Go for it, Min… the inline skates! You just have to do it!

While I was ill, but before I was diagnosed, I began a list of Things I Want to Do… (the unsaid bit was "before I die"):

In no particular order:
1. Take part in a flashmob
2. Perform Playback in public
3. Have a compassionate conversation with my mum, without losing my…[Read more]

Beautifully said and so wise and it reflects my experience of aging too, even at only 49!

I've so noticed a change in my attitude to all sorts of things, mainly money and stress, since I was diagnosed… even been accused of being Pollyanna. LOL! But I'm happy/content most of the time and that has to be a good thing and helpful to…[Read more]

So funny, I really did cry from laughing… but I am on Dex just now!

I think you need to be careful though, posting this level of laughing matter… don't you know there's a lot of rib and back pain about???? Bloody hurts to laugh sometimes. Might need a health warning! LOL!

Thank you!

Good grief!!! Why on earth did they release your husband on the day of his transplant? I'm sorry to hear he relapsed so quickly.

I've been told I will have a 2-4 week stay in hospital and that you have to be ultra-careful of not catching any infections.

I'm curious about your title: "Would you risk alternative therapies alone?" Does this…[Read more]

Hi Debs

I'm also on the Myeloma XI trial on the RCD treatment. I've mentioned my side effects in other posts, so won't bore everyone again. But if you (or anyone else on the trial) ever want to compare notes, feel free to contact me.

I'm being treated at Nottingham City Hospital, Centre for Clinical Haematology, under Drs Cathy Williams and…[Read more]

Hi Marion

I am also on the Myeloma XI trial on the RCD treatment.

When my girlfriend and I read the list of Very Common, Common, Uncommon, and Rare side effects on the patient information leaflet, all I could do was burst out laughing… I mean it covers just about every possible symptom ever!

The best bit was at the end of the VERY long…[Read more]

I was also told, by the same person, that cancer hates oxygen and loves sugar. Anyone else got any unconventional wisdom?

I think what I get most support from and respond to most enthusiastically is not so much the medical and clinical details, especially as every one of us seems to have such specifically individual treatment and experiences, but the more psychological and spiritual aspects of our journeys, so thank you Gaye for sharing your personal revelation.

I…[Read more]

Okay! In for a penny, and all that…

My name is Jet. I am 49 years young and only 3 weeks post-diagnosis.

I suffered with weird back pains throughout last summer/autumn and a rapidly decreasing appetite and disinterest in food (unheard of for me!). I got properly ill on Xmas Day, blood tests, then told I had severe kidney failure. A few…[Read more]

Haha! Thanks for that little distraction. I'm well impressed with my skills… Only Bucharest, Talinn and Vilnius scuppered me, but all of Western Europe I was within 10 miles. Yee ha!!!

Hello Ruth

That sounds like such a terrible thing to deal with and I can appreciate how alone you must feel with it, separated from someone you clearly care a lot about and has such an impact on your and your children's lives. 29 is unbelievably young (and this coming from a 49 year old!).

I don't know if it's of any help, but the…[Read more]

Hi Jon

Like you, I am under 50 (will be celebrating, all being well this July!) and was only diagnosed on 4 Feb. I think I was very fortunate in that I only had a few months of strange back pains and loss of appetite/nausea (caused by hypercalcaemia) before I got quite ill and couldn't eat at all on Xmas Day. It took them a month to do a blood…[Read more]

I love the idea that this group of people is anarchistic… Not seen signs of it yet, but love the idea! LOL!