[MothasParticipant]

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 consultant first, go to research second if necessary.

[MothasParticipant]

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 😉

[MothasParticipant]

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 to bad, I'm tailing off the final dose this week to avoid going totally mental. I've found that sleeping tablets give me a good solid 5 hours, which is much better than I was getting before. I can then normally manage a good couple of hours of lighter sleep after that, so not too bad.

[MothasParticipant]

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

[MothasParticipant]

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 my staging process. EMD can be present at any staging and at the occurrence of the disease and much later on with people have have gone on and on.

I totally agree about the caution of using staging as a predictive indicator. Apologies for the lack of clarity, I've had a gazillion tonnes of Dex this week, several squirts of Doxyrubicin and Velcade. I'm not quite with it!

🙂

For those interested in some of the latest clinical research into extra-medullary MM here are a couple of links from:

[b]Haematologica[/b]:

"Extramedullary involvement in multiple myeloma"
http://www.haematologica.org/content/97/11/1618.full

doi: 10.3324/haematol.2012.078519
haematol November 1, 2012 vol. 97 no. 11 1618-1619

and

[b]Nature[/b]
"Extramedullary disease in plasma cell myeloma: the iceberg phenomenon"

http://www.nature.com/bmt/journal/v48/n1/full/bmt201226a.html
Bone Marrow Transplantation (2013) 48, 10?18; doi:10.1038/bmt.2012.26; published online 12 March 2012

[MothasParticipant]

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 present to you. There is hope for the future with lots of research interest in this area and new treatments coming on stream on a regular basis.

lots of love

tom

[MothasParticipant]

thanks Jean.

[MothasParticipant]

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

many thanks

tom

[MothasParticipant]

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 believe that your partner can also stay overnight too.

[MothasParticipant]

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 real cravings for carbs but I'm going to try to eat more fresh fruit and veg instead this time.

[MothasParticipant]

Great news. Congrats and thanks for the running commentary.

[MothasParticipant]

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.

[MothasParticipant]

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 place to be.

Tom

[MothasParticipant]

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, Adriamycin and Dex. It's one of the newer treatment protocols and is supposed to be good. Lots of people have been on it including many on here.

I can't advise on whether you should swap to Addenbrooks or not, although it has got a very good reputation particularly for kidney and urology issues. From a personal point of view I wouldn't be worried about a 15 minute walk from Kings X to UCL, but I'm not suffering much pain at the moment. You could also get the 73 bus which stops outside the station (on the other side) and takes you straight down Gower street. About a 5 minute journey.

Drop me a line if you need any more help.

p.s. I don't know what you do as a job and realise this is a tricky area for some, but your boss has no right to tell you that you shouldn't be working. Legally they are obliged to support you if you want to and feel well enough to carry on working during treatment.

I have already informed my line manager that I will be working as long as possible. At some point I wont be able to, but that's my decision informed by advice from my specialist. If you have an HR department they should be able to help.

[MothasParticipant]

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 around.

Tom

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