• Hi Paul – good luck with your SCT when it comes – it really is just another treatment option that gives you a rough couple of weeks then on the road to recovery.It’s not pleasant in parts but it is all very doable with a relatively short length of unpleasant time. Your recovery will be so much easier and quicker at 51 yrs if all goes to plan. S…[Read more]

  • rebeccaR replied to the topic Stopping treatment in the forum Treatment 4 years, 2 months ago

    Hi – Whikst maintenance is only a given when on a trial when I discussed treatment options st 1st relapse (tho not there yet!) I was led to believe I would be on low dose thalidomide or say revlimid until the treatment stopped working – which is basically the same as maintenance. Whilst we do not get offered maintenance up front in the Uk (unless…[Read more]

  • Hi – 30 days is very soon after such a big procedure. A consultant likened it to having open heart surgery so that should put it in perspective. Your immune system will be up and down as it reconstructs. I was very up n down for quite a while but once I’d turned that corner I went from strength to strength and would say back to full fitness in 3 m…[Read more]

  • Hi Linda – great to hear you had a fabulous time – I come from a family of long livers with no cancer connections. I was diagnosed at 50 and whilst light chains were relatively small they aggressively attack the kidneys (14:16 translocation) I had chemo for 8 months Sct then drug free currently at 4yrs 4 months post Sct. I do get tetchy now…[Read more]

  • Hi Linda – Many congratulations and hope you too are having some bubbly! It is great to hear that this achievable- posts like yours are much needed boosts to us all. Enjoy your celebrations

  • Hi – The hospital will arrange a freecwig/fitting pre losing it which will reassure her how fab they are. As I kept my illness a secret I was hell bent on having good wigs – I got them online where you can try n return but there are shops in cities where you can try etc. I spent a fortune on them as I chose to match my hair and shoulder length…[Read more]

  • Hi sorry to hear your news and I know how overwhelming this is but there is no big rush to know everything now as you are in this for the long haul. My advise is for you to read all the info etc found on this site re treatments, MM etc but only share the info when your parents ask – it is a huge shock and often you only want to know things when…[Read more]

  • rebeccaR replied to the topic Plateau in the forum Newcomers 4 years, 3 months ago

    Hi – as your father has plateaued with safe numbers not requiring further treatment then it is normal to come off all meds and hopefully resume a good quality drug free life. Unless on a trial which involves maintenance therapy we are not in a position in the UK to have that option. I have not had the option of small dose maintenance BUT on…[Read more]

  • rebeccaR replied to the topic Tiredness in the forum Side-effects 4 years, 3 months ago

    Hi Denise, what chemo are you on exactly? It is normal to get more and more fatigued as the cycles go on but….when you feel so fatigued – force yourself to go for a brisk walk and trust me you will feel instantly less fatigued. It is hard to believe but pushing yourself to exercise will lift your mood and energy levels. Give it a try you will be…[Read more]

  • rebeccaR replied to the topic 11years from diagnosis in the forum General 4 years, 4 months ago

    NIck that is fantastic news and long may it continue. Thanks very much for sharing – we all need to hear positives along the way for a much needed boost

  • Hi Carole, Good luck with the transplant – you may have got the call by now which will negate this response but….I believe many people suck on ice for 3-3 hours or as long as they can stand thus protecting the mouth area and hopefully prevent mucositis. Those who do this and fon’t Get it assume it is the ice effect. I did not suck any ice and d…[Read more]

  • rebeccaR replied to the topic High Risk? VTD PACE? in the forum Carers 4 years, 4 months ago

    Hi Elise, Sorry to hear about your mum. VDT Pace is a combination of bortezomib, dexamethasone, thalidomide, cisplatin, adriamycin, cyclophosphamide, and etoposide – so the addition of the last 4 to the VDT she was on. It is, as you can imagine by the sheer number of components a very harsh multiple treatment and is basically like throwing the…[Read more]

  • rebeccaR replied to the topic 7 Years ago Today in the forum General 4 years, 5 months ago

    Hi Phil, Congratulations – love reading posts like this – whilst we are all different it’s great to hear the positives.I am just over 4 years post transplant with no treatment/in remission and get tetchy/can’t help but wonder how long it can last.
    Hope you are supping some bubbly now and long may you continue to be in remission – hope to read you…[Read more]

  • rebeccaR replied to the topic Just Diagnosed in the forum Newcomers 4 years, 6 months ago

    That sounds just what the Dr ordered, lots of distractions and lots of positive focus on the future. There is no doubt he will get through it but it is inevitably a long and winding road – he is young and fit – one of the greatest assets going into treatment but it is small consolation for having it so young. At 50 – and very fit – I wished I had…[Read more]

  • rebeccaR replied to the topic Just Diagnosed in the forum Newcomers 4 years, 6 months ago

    Hi – So sorry to hear your news – I was 50 when diagnosed has velcadd n dex followed by an SCT and remain in remission to date and physically life is back to normal. It is no comfort but is age is a very good factor in treatment/options. If you choose to look at survival stats beat in mind the average age of diagnosis is around 70 where there are…[Read more]

  • Hi Ann – thanks for asking I am doing good – in a week I will be celebrating 5 years since diagnosis and 4 years post SCT – still in remission and drug free! Must admit as time goes by I get tetchy thinking when will my run of luck will end – as always with MM mind games when you relapse and mind games when in remission(tut) but I’ll take it! I a…[Read more]

  • rebeccaR replied to the topic Here we go again…. in the forum Carers 4 years, 7 months ago

    Hi Maureen, so sorry to hear of Ian’s passing. You helped him throughout it all and right up to the end and no-one can ask for more from a partner. I hope the rest of your life is filled with happiness, laughter, adventures and peace. I already get the feeling you realise living is a privilege that musn’t be wasted so I know you’ll be okay.

  • Hi Sara – my biggest coping mechanism during treatment was trying to control my mind and stop pondering on “what ifs” Andrey and take it Day to day. I started saving motivational quotes that became my mantra throughout in controlling my mind to “not go there” and stay in the moment. The main one I used was

    “Worry does not empty tomorrow…[Read more]

  • Hi Sara – Mm is very individual together with your health to start off with/fitness/robustness. One week it can look bleak take a treatment that suits your MM and you can pick up and rally very quickly. What may appear very aggressive MM is only like that if you can’t quickly find the chemo that will work for you and yours. At 50, I was told a l…[Read more]

  • Tony – You are an inspiration – carry on carrying on!

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