Hi Nicki.
sorry to hear about Sam's relapse, I had my SCT in September 2011 and I am now relapsing, 🙁 my kappa light chains were last 69 but consultant says don't need to start treatment until they get to around 600 as myeloma isn't active until 600 plus if I am showing no other signs. Haven't had a BMB though. There is talk of having revlimid…[Read more]

Hi Helen
oh I wish you wouldn't copy me! It really is disappointing to find out that remission is coming to an end after what seems to be such a short time for both of us. It is not a good place to be in this watching and waiting period but it is still better than being on treatment so lets hope we both have a long period of time before we need…[Read more]

Hi Eve

I have just got back from Tromso in Norway so didn't see your post till now. I had a great time and saw the northern lights and went dog sledding. My light chains stayed more or less than same on my last light test so no need to start treatment yet, the consultant said I can go to India if they don't go over 600 so as they were only 69…[Read more]

Hi Ozzy, hope you feel better soon, you are obviously having a bad reaction to the velcade, have they given you anti sickness medication and stuff for constipation, you have to take it every day regardless.

Wendy

HI KEITH,yes I realise the law of diminishing returns when it comes to a second stem cell transplant have told me medical consultant that I am not keen to have one until maybe further down the line holding it in reserve, so I have asked them to come up with something else instead. The good news is that my consultant says I should be fine to go to…[Read more]

Hi Suan

I had weak and wobbly legs too but think it might have been caused by the dex not the thal or maybe both? Are you taking dex too? I already had my SCT in September 2011, I'm now starting to relapse. You need to see what your doctor says about having it or not.

Good luck with your treatment

Wendy

Hi Keith

That's a lot of platelets and transfusions, I do hope the medical team get on top of it and you can get a break from the relentless visits to hospital which is tiring in itself and that you get some sleep tonight. When will you get your next paraproteins results?

Take care

Wendy x

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 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]

Hi Keith
Sorry to hear your news and really hope it is a blip. If it isn't, at least the consultant has come up with some other options, but its no wonder you're tired and fed up. Take it easy and fingers crossed for Friday.

Wendy

BH Sandra, you mean to say you've been going on with a fractured hip all this time, glad to hear its healing up and hope your mobility is improving and that your blood tests were goood

Wendy x

Hi Jo

I dont think it was my post you read on facebook as I dont have paraproteins but see my recent update – its still good news!