Hi Sharon
It is normal for all sorts of arthritic pain to disappear when you are on steroids, but I think you should mention the pain at the next appointment – if there is bone dammage, it is something they need to keep an eye on. And adequate pain control could be started.
Love Helen

Just an update, I had a light chain test done privately recently in the hope that it would give me peace of mind but it didn't as it showed another rise from 39 to 77 in my kappa light chains. I was gutted and devastated. My support nurse agreed that it would seem to be the case that I was relapsing but still said I may not need to start treatment…[Read more]

Hi Lesley

welcome to the forum, like you as was diagnosed on Christmas eve, December 2010, there is never a good time but xmas eve is especially not a good time!

Also like you I was asked to think about going on the Myeloma X1 trial, bombarded with leaflets and then asked the next day what I had decided. I opted for going on the trial…[Read more]

Hi Lesley
On 3.2.11 I was told I had myeloma. It was the biggest surprise and shock ever. I was the fittest and most energetic of people, though a bit anaemic for no reason, blood transfusion service told me to go and get it checked out. I was reeling from the shock. I can't quite believe that I let them give me all this noxious stuff for such a…[Read more]

Hi Peter and Tom
Clearly this is now a competition! I was in for 3 days for the Melphalan and stem cells, then home for 2 days and back in for 10 a total of 13 days in hospital!
Hope you don't feel too bad Peter, just hang on in there.
Love Helen

Dear Lesley
I started the myeloma xi trial almost 2 years ago. Since then I have completed induction chemo, had stem cell transplant and now am on to my 15th cycle of Revlimid maintenance. I have been in complete remission since April 2011. I'm back at work full time, been on holiday to New Zealand and Italy, and am generally getting on with…[Read more]

Hi Tina
Yes I do have side effects, I have a poor sense of taste and smell so some foods really do nothing for me now as they taste so different and I have to eat lots of fruit and veg or get a very gripey gut and constipation. I get quite tired too, and I don't always realise how tired until too late and then the next day is difficult.
They…[Read more]

Dear Wendy
I'm in deep admiration of your fitness regime, I gave up playing tennis about 10 years ago after rupturing a calf muscle and realising that it could easily happen again so only do walking now! My daughter has caught the bug for the great north run and has done it twice now but says she sees it as putting something back not a love…[Read more]

Hi Tina
Welcome to the maintenance club! There are quite a few of us now. I've just started cycle 15 on the Revlimid and aspirin and still in complete remission. Hope all goes well for you.
Love Helen

Hi Ali and Vikki
This infection lark is a nuisance, I'm so grumpy just before the next one rears its ugly head, and sadly I never realise until its on top of me. I'm beginning to see a pattern here, when I do lots and lots of stuff, then rest a bit more – then I seem to pick things up. Had a lovely christmas then a cold, now conjunctivitis and a…[Read more]

Hi Andy

I'm glad to hear you're feeling a bit better and stronger and I hope you manage to get your holidays in. I hope that the revlimid does the job for you, 11 cycles and continuing! I intend to do the triathlon as long as I am feeling well which I am, off to India at the beginning of March, somewhere I never thought I would be going after…[Read more]

Oh dear Ozzy, not the news you want to hear, sounds like your consultant is on it though, are you experiencing any pain or other symptoms? Good luck tomorrow and keep us posted.

Wendy

Hi Keith

Thanks for your comments, you have more experience than you would ideally like of relapsing! I feel very well as I said in my post although at the level they are at I suppose it is unlikely at the moment that myeloma is active or that I will need to start treatment. Whilst I continue to feel well, I will carry on with my plans to do a…[Read more]

Hi Charlie

I think it really depends on whether you have any bone damage and what pain you have. The Myeloma UK booklet says walking and low impact exercise is good like yoga and pilates and this would include swimming but as swimming pools can be a hotbed of germs these are probably best avoided!

It really depends on what you can do. I was…[Read more]

Hi Keith
gutted for you re the bendamustine, so its out with the new and in with the old. CDT can be very effective and I really hope it works for you. Take extra care not to avoid infections (hard when you are in hospital all the time) and look after yourself.

Wendy

Hi Helen

I was quite active prior to diagnosis and did the 10k run in 2009 but I am more so now, but was inspired to try the triathlon by the Olympics and thought it would be good fun! My real passion is tennis though and I am now playing 2/3 times a week (and its outdoors!). To be honest I nearly chucked out all my sports gear after diagnosis…[Read more]

Dear Wendy
I'm keeping my fingers crossed for you that this is not a relapse, but a blip. I hope that your training for the triathlon can continue uninterrupted. Did you do all this exercise before the myeloma or is this a new hobby?
Love Helen

Dear Keith
Like Eva and Dai I'm really sorry to hear this, I hope CDT offers you some space.
And Dai it's good to hear you are handling the bendamustine well enough to get your writing done.
Love Helen

Hi Ali
A impressive response from a 9 year old, they can be so astute when they want to can't they? I'm on my week off Revlimid and feel much more like eating again, now catching up on the advent calendar and the Christmas chocolate that I couldn't face at Christmas!
One thing I do notice is when I'm about to get an infection, I don't feel like…[Read more]

Dear Paul
Not a club you ever wanted to join but welcome. Do look at Vikki, Chris and most recently Megan's posts about stem cell transplant, they give you lots of information about SCT, in diary format. I had mine 16 months ago and am doing well since. It is a scarey thing to go through, but more about enduring the treatment than anything else…[Read more]