It looks like a bit of a false alarm, on that front Eva so one less thing to worry about. Thanks for your concern.

Helen thanks for taking the time to offer such detailed and thoughtful advice.

I've managed to talk to my consultant and , apparently it looks like I have a pretty standard multiple foci of BM-based disease and not Extramedullary. Sometimes, there may be 'extramedullary extension' of disease but not it this case.

I'm learning. Talk to…[Read more]

Hi Eva

I picked up my guitar for the first time in ages yesterday, so I'm making time for creative things. It helps, along with the meditation.

I've also set myself a saving target to buy a new guitar, so by the time that I get through the other side of the transplant I'll be able to splash out a bit. I haven't told the wife yet…

Thanks for all the replies people.

I had my second set of squirts yesterday, Ondansetron and Doxyrubicin. Usual red wee from the doxyrubicin he, eh.

Side effects after 2nd round of chemo:
No nausea, but did feel a bit fuggy headed in the evening and very slight but noticeable increase in neuropathy so will keep an eye on that.

Dex: not…[Read more]

Keith rooting for you, I hope the transfusions give you what you need.
You've been a fount of wisdom and experience on these boards and always read you with interest.
All the best

Tom

I'd like to thank everyone for replying it's been most useful. The wisdom of the board is a wonderful thing.

I wasn't really talking about the link between staging and remission/survival per se, but really wanted some insights into the sub-condition of extra-medullary development which has been bought up as a possible condition as a result of…[Read more]

Dear tebebe, welcome to the forum.
Lots of good information here, and I've found people very helpful.

I can't help specifically with AL Amyloidosis as I don't have that particular varient of MM but I can only echo Pat's sentiments that this is not a death sentence, you will find the strength to negotiate the challenges that the disease will…[Read more]

thanks Jean.

What is the MM diary and how do we get one 🙂

many thanks

tom

Debs
UCH has a 'hotel' for people doing treatment. They call it ambulatory care, meaning if you are well enough to walk round the corner you stay there instead…so instead of keeping you in overnight in a hospital bed when undergoing treatment they put you up in their hotel. It's meant to be nice and doesn't cost you anything (I think). I…[Read more]

Yes this is interesting I've seen conflicting advice on this.
I was told to always take it in the morning, but I've seen medical advice saying take it before you go to bed.

I'm not actually on it at the moment but will be starting again within a couple of weeks. Great.
I am planning to try to eat more healthily this time round, it gave me…[Read more]

Great news. Congrats and thanks for the running commentary.

Deb there's an NCP in coram street which I think costs around 18 quid a day, and another under Euston station which I think is owned by network rail that I've used before. Both very close to UCL.

There's quite a few NCP parking areas near there but these are the ones I've used.

Dear Lesley
Having just been diagnosed before xmas I fully sympathise. I was left reeling by the news, concerned about prognosis, worried about how it would effect my life, relationships, career.

It's totally normal to be frightened but there is much hope for myeloma treatments and lots of us will be going on for years.

This forum is a good…[Read more]

Hi Deborah,

Dex, that'll make you a bit hyper, increase your apetite and it stops me sleeping. Allopurinol is used to keep acid formation under control it didn't give me any side effects at all. Ranitadine I've never heard of I'm afraid.

I'm not on PADIMAC but I will be using the same treatment protocol called PAD which is Velcade,…[Read more]

Hi debs, I'm 46 and will also be starting at UCL this month. Might bump into you at some point.
Lots of new treatment on the horizon and serious discussion that Myeloma will soon be a treatable chronic disease.

I am hopeful.

UCL is one of the world's best research led hospitals too with great Myeloma specialists.

Hope to see you…[Read more]

Turns me into a nutter, I eat lots of cake and I don't sleep for 3 days 🙂

Hi Daniel
the fact that your dad had a really good remission of around 6 years after his first SCT suggests he'll get a good response from his second. I'd hesitate to give you any further advice on this but the fact that he's on for a second SCT is also good as they feel his constitution can take it.