Hi Richard, I was 50 when diagnosed at a critical stage of kidney failure – shock diagnosis etc – had 8 cycles of velcade/dex followed by SCT at xmas just over a year since diagnosis and currently still in remission and drug free. Kidneys took a big hit gfr now 32 but do not hinder my life tho will be problematic with further treatments and…[Read more]

Oh dear, that all just sounds like cutting corners and saving money at a time when you don’t need it. Well hang on to the fact that if it gets too “disruptive” you’ll be on a side ward. The only thing with sharing a ward is everyone does tend to hog the shower/toilet (women do anyway) so I wouldn’t/couldn’t wait to use it. Perhaps they are giving…[Read more]

Hi Dean, sorry you’re not in yet – I had the same problem at Leeds – I had to have the chest port in before I was on the official “ready” list and had to phone up each day for a bed. This started early October – so could not go the gym or play tennis due to chest portal and actually went in mid December so was in at Xmas. I had not been on…[Read more]

Hi Andy,

Sounds like you need/deserve another holiday! Sometimes you read posts like this and think wow you’ve been through the mill and come through it and all’s well..great …but when you reread it and, for some, remembering time on treatment, it is one massive helluva trauma to go through from start to finish. Your line “I then had to tell…[Read more]

Hi Debbie, welcome to the forum and I think you had the right approach to ignore the blood tests when MGUS but you appear to be one step further now so, again, you have the right approach to delve (at your own pace) a bit more into the world of MM. Must say didn’t know it could affect your sight so something new for me also. I was diagnosed at 50…[Read more]

Hi, So great to hear from you at last …phew!… Wow 26 cycles – impressive – beating sepsis twice – wow even more impressive. Despite being dealt an unlucky hand I think lady luck is most certainly on your side and routing for you now. Glad to hear you are still enjoying travels and house moves(?). Keep carrying on carrying on!…oh, and don’t…[Read more]

Thanks Dean – you’ll be enjoying xmas too also. To be honest, I think Skype, phone etc is as good as visits when you have all the family to consider. I think it will be quite a strain for your wife and it is hard to be the one with the juggling act trying to be there for everyone. I was much happier knowing my daughter was ok and in a normal…[Read more]

Thanks Stanley – will post if my crown slips.

Dean, good luck, the one piece of advice I give for those going into SCt is, and I say this with confidence due to your age, on average and with luck you’ll be out in around 16 days. I chose 16 days and did a little count down calendar. No matter how crap my day was when I crossed another day off and…[Read more]

Hi – perhaps yours are just more delayed and will disappear again then? Why don’t you ask on the Beacon for others experience of it occurring much later – I am sure you will get some good feedback. I will be 3 years post SCT at Xmas and had my bloods today so will hear next Wednesday of any change – I have now moved to a 4 monthly check but think…[Read more]

Hi Stanley, Am sure you have seen this on the Beacon but have copied an extract below. Am sure there have also been discussion on their threads from people with similar developments – also think they class it as MGUS status rather than relapse if all else is good. Glad everything else looks ok.

Different M-Spike After Stem Cell Transplantation…[Read more]

Hi Dean, If available to you, I believe expert opinion would concur to do it as early as possible. I believe if you ring the helpline they can put you in touch with a “peer” who has undergone the process and you can call and talk to them and they can be used as an ear/guide throughout the process. I believe they have people trained/available for…[Read more]

Yes looking at the web he appears to meet the criteria but after the velcade/dex did he have a full course of rev/dex treatment or was it just a quick top up pre Sct to lower numbers further? Otherwise can’t understand shy he is not eligible so would chase that up as perhaps that trial would be better than the pom? Either way Maureen I would…[Read more]

Hi Susie..great news in the grand scheme of things and hopefully your PP will level out or continue to rise at slow snails pace only. Great to hear of no MM activity so that’s more than an early xmas present for you. Enjoy x

Hi Maureen, Good luck with the pom – this could be the one that works its magic for you so fingers crossed. I am sure Ian has not gone though the whole series of treatments/different combinations of therapy? so just for peace of mind have to hand the best experts in the country for second opinions/options.

Good luck

Mmmm… quite hedonistic 2 pints … but as daft as it sounds if belly dancing springs to mind why not give it a whirl. I actually work with someone who does it and she thinks it’s the most fantastic thing ever and makes her feel very happy/sexy/carefree….so even if you were joking why not give it a whirl…let’s face it stranger things have…[Read more]

Hi there, You sound a little battle weary today which is understandable but hey…great bowel! Next time you see your paperwork correct the spelling in red and add – cytogenics are a possible predictor only of poor prognosis due to the unique/individual nature of MM. Still breathless tho? sounds like you need a nice pint of blood to pick you…[Read more]

Hi Sue, Whilst I can’t answer your question I would just like to point out that a treatment session is about £30 and you can easily learn this skill for the cost of 4 -5 sessions and self reiki/practise. I became interested in reiki when someone at work told me about their experience and decided to have a session – but then booked myself on a…[Read more]

Oh thank you Peter – if it’s one thing I have learnt it’s that life is not to be wasted and if I go first I hope my husband seizes my departure to start afresh on new adventures – not in a better way (tho I really hope it will be for him) but just a different way…and when I say life is not to be wasted I mean ..unless you want to. Many many…[Read more]

So sorry to hear your news but am heartened that you will continue the fight to not let this disease destroy any more than it has already. Life is precious – do your husband proud and live life to the full – for the both of you.

Rebecca x

Hi Brian, I am nearly 3 years post SCT without maintenance and it reduced my lambda to single figures and I remain in normal range still – altho numbers have crept up but still within range. I was, however, 0.3% MRD pre and post SCT so no change there. My consultant says the length of my remission is due to the deepening of the response from the…[Read more]