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  • Hi Jane

    Are you on Facebook? I think there’s quite a lively Myeloma page on there  where someone may be able to help you.

    Also have you tried speaking to the Myeloma  UK Helpline nurses ( number above) – they would have good advice.

    Good luck for tomorrow – are you seeing a myeloma specialist? I am monitored by a general haematology clinic at t…[Read more]

  • cygnet replied to the topic Tips and advice in the forum Newcomers 6 years, 3 months ago

    Hi

    I’m sorry to hear about your grandad’s diagnosis – but you obviously are caring family & that support will be invaluable to him as he comes to terms with his situation.

    Have you thought about contacting your local support group or attending an  Info day? That would allow you to find out more – especially via the local group. I think they are…[Read more]

  • Hi ! I take curcumin – 1 tablet turmeric  which  is 10,000mg- daily. I started after diagnosis a year ago after researching Margarets Corner among others,

    I buy my tablets from the UK Kent company Nature’s Best whom I have bought from for years – they offer a free nutritional helpline if you’re interested.

    My pp was 27 at diagnosis – su…[Read more]

  • Hi

    I’m so sorry to hear you are having such a difficult time. Have you spoken to the Specialist Nurses on the Helpline – I’m sure they can give you the details/numbers you are looking for. Also the  American Myeloma Beacon site may give you some more info.

    Love & hugs,

    C x

  • Hi

    I’m sorry to hear you are getting mixed ( as well as frustrating) messages from your hospital.

    This is too technical a question for me but I would strongly recommend you call the Helpline nurses as I’m sure they will be able to help you.

    For most of us ending up with a myeloma or mgus diagnosis is a long process so do keep asking any…[Read more]

  • cygnet replied to the topic newly diagnosed in the forum Newcomers 6 years, 4 months ago

    Hi Jane

    Sorry to hear about your husband – I’m not surprised you’re both still reeling from the diagnosis. I’m not sure I’ll ever totally get my head around my situation…

    Have you seem Myeloma UK have an info sheet on Daratumumab? I think there is also some info on it on the Myeloma Beacon website which is a reliable source too.

    Good luck

    C x

  • Hi Mark – & can I echo everyone else in saying sorry to hear you have joined the smoulderers. (of which I too am one)…

    Everything Rebecca says is worth reflecting on. I have read many of her posts & have followed her advice on choosing carefully who, when & what to say. Subsequently only my husband & I know about my diagnosis – apart from the…[Read more]

  • cygnet replied to the topic newly diagnosed in the forum Newcomers 6 years, 4 months ago

    Hi Teepsy

    Sorry to hear you’re having a difficult time. I don’t know if this helps but I had my results about four weeks after my biopsy & skeletal scan.

    The waiting is definitely the worst bit ( although it may not feel like it so soon after your bone marrow biopsy!!) It helps if you try & stay distracted & busy but do talk to the Helpline…[Read more]

  • cygnet replied to the topic New to forum in the forum Newcomers 6 years, 4 months ago

    Hi Sarah

    Welcome – & I’m so sorry to hear you’ve had a difficult few weeks worrying & waiting. I was told at a similar time last year that was my pp was 27 & then  – like you – had a tortuous wait for a New Year bone marrow biopsy & skeletal survey.

    I haven’t had any treatment yet as such – just “watch & wait” monitoring with 4 monthly…[Read more]

  • Hi Geebee and Welcome!

    Yes, the diagnosis process is rather excruciating ( in more ways then one sometimes!!) and even after all that the questions & confusion continue for all of us I think.

    I was reeling when I first found myself where you are just over a year ago but it’s amazing how  life settles down. I have found the folks on here very…[Read more]

  • Bless you – how unfortunate  for you the sale of the house is coming so close to the anniversary of losing your mum and Christmas.

    Please remember no one can take your memories away and everyone grieves differently. Now you also are grieving the loss of your family home and everything associated with it. Give yourself time to do this at your own…[Read more]

  • cygnet replied to the topic SCT very soon in the forum Treatment 6 years, 5 months ago

    Welcome home Graeme! I hope you have a good night’s sleep in your own bed!

    Thank you for your blog & for sharing your experience with us.

    Sending get well wishes,

    C xx

  • cygnet replied to the topic SCT very soon in the forum Treatment 6 years, 5 months ago

    Hi Louis & Dino

    Thank you so much for these insights – as someone who may  well find themselves where you are in the future I am finding your blogs extremely illuminating.

    Hang is there guys – you’re moving onwards & upwards – & hopefully closer towards getting home & more of your life back – everyday!

    I assume you’ve both thought of skype etc…[Read more]

  • Hi Mike

    Thanks for sharing your wise thoughts & reflections.

    For me, what strikes me as I read the various posts is how varied the approach to MGUS/ smouldering/active myeloma is & this postcode lottery effect worries me. Even the NICE guidelines seem vague – for example in  my area (East Kent) they don’t measure free light chains I’ve been…[Read more]

  • cygnet replied to the topic SCT very soon in the forum Treatment 6 years, 6 months ago

    Hi Dino

    Stay positive – we are rooting for you!

    Sending love & hugs,

    C xx

     

  • Hi Andy

    This is very good news  & it’s great to have your contributions back on the forum!

    Keep up the positive work recovery/physio wise … & keep counting down to your next holiday 🙂

    Love & hugs,

    C xx

  • Hi Andy  – great to hear from you. We were all worried about you.

    I’m sorry you’ve had such a difficult time but I’m glad you are feeling a little better.  Like some of the others I don’t “do” Facebook so I was grateful to Fiona for keeping us updated.

    Take it easy & listen to your body

    Love & hugs,

    C x

  • Cupcake

    I am so sorry to hear your news. My thoughts are with you at this difficult time.

    Sending love & hugs

    C xx

  • Hi

    Thank you for this info – I’m not on Facebook but have been concerned about his silence.

    Andy –  please get well soon; I’m sure I’m not the only person missing your welcome input on here!

    Sending love & hugs,

    C x

  • Hi All

    Thanks for your kind words – my consultant rang me yesterday with my pp result as they’d re-done it as ” urgent” . Now I can smoulder on until January for my next appointment which feels quite good as it is next year 🙂

    Helen –  feeling for you in this lead up period & just a thought… I decided  this time I would manage my pre a…[Read more]

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