[sandydeliParticipant]

Hi any one got any advice on my light chains rising ? Saw my consultant 2 weeks ago and told me my myeloma was starting to be active again and he wants to see me on 7th of January is pose to see if they’ve rising any more ? My question for all you lovel people is The day after this appointment my friends want me to go to Benidorm for a long weekend do you think this is wise or would it be a mistake ? Any comments will be taken on board. Thanks Sandra.

[annlynnParticipant]

Say yBenidorm here i come starting new treatment if that is the consultant s plan. wont hurt if it starts three days later !!!! and the fun you have will be a lovely memory on the rough days that might follow ,. Enjoy xmas. and. a girly weekend deal. with the rest afterwards then give it your all. good. luck. annlynn xxx

[rebeccaRParticipant]

Hi Sandra, Sorry to hear your news but even on the rise it could be a watch and wait until treatment actually needs to start so can’t think of anything better to set you up for the ride ahead than a good old jaunt with friends before travelling abroad becomes a no-no. Go for it

Rebecca x

[janwParticipant]

Hi Sandra

Sorry to hear your light chains are rising again. What sort of level were they last time and what level are they now? Presumably you provided a urine test at your last consultant’s visit? Could you phone up after Xmas and ask for your results before you decide about your visit abroad? When I was diagnosed with myeloma in 2010, my light chains were 2300 and I had suffered vertebrae damage, but my kidney functions and other results sere ok. Therefore when my light chains started rising slowly again three years ago, my consultant gave me a target of 1000 for my light chains before further treatment on the understanding that all my other results were ok. I think the difficulty is that sometimes light chains can increase very quickly and at other times at quite a slow rate.

Jan

[sandydeliParticipant]

Hi Jan no urine sample it was just on my blood results. I’m not sure what the levels were I was’nt really listening as it was a shock and doc was saying how do I feel ? I said well I knew it would come back but not so soon 4 years since SCT. He was saying things like he was so sorry. My old doc was so much better said it how it was did everything himself this ones young and very nice but a bit wet if you know what I mean ?

[janwParticipant]

Hi Sandra, I know what you mean about being in shock once the consultant mentions further possible treatment, especially when you only have limited time during an appointment and it’s been four years since your last treatment. When my light chains started rising three years ago, I started phoning the myeloma nurse at the clinic before my next consultant’s visit in order to be more prepared to discuss possible options if further treatment was necessary. It was my way of handling the prospect of treatment. Why don’t you try to ring the myeloma nurse at your hospital and ask about your results from your previous visit which should provide you with some more info. Most times the consultant also sends the latest results to your GP. You could also try this route for further details. Your doctor might just be raising the idea about possible treatment, but it might not be necessary for some considerable time.
Jan

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