It was mentioned to me by the Nurse Specialist – maybe because I asked alot of questions!!! I am a 56 year old female who was diagnosed three years ago. My pp at diagnosis was 25 but  on monitoring subsequently has ranged from 21 to now 26 (sigh). My bmb was 10% so…[Read more]

What did you decide to do regarding the daratumumab trial please?

It was mentioned to me today at clinic so I am curious to know what you decided to do….

Many thanks,

Cygnet

Yes I am still smoldering – and I hope to continue to do so for many years!

I am not on any treatment just what the optimists call “active monitoring…” and the pessimists call “watch and wait…” ! I think your attitude to this is crucial – you can chose to be a victim – or not. In practice this means…[Read more]

I’m sorry to hear you and your husband have joined our club!!

I was interested on your comment about the haematologist’s reluctance to use the term “smoldering.” I came across the same thing initially here in Kent when I was diagnosed three years ago and found it frustrating. My pp and bone marrow numbers said I was smoldering according…[Read more]

I’m sorry you are suffering so much and send lots of love and hugs . I hope some other people who have experienced this regime will post  with suggestions to help you feel better.

I have not had treatment yet but everything I read seems to say it is very individual. Maybe it is worth you chatting to the  Myeloma UK nurses on the h…[Read more]

I am sorry to hear about your experience – you don’t need the stress when you are undergoing treatment.

Have you thought about talking to one of the Myeloma UK nurses on the Helpline? I spoke to them when I had problems with my hospital clinic and they were very helpful. So was my gp who immediately offered to refer me elsewhere – so…[Read more]

Sorry to hear you are having such a stressful time.

I think what has happened here is no-one explained to you that your possible positive result would mean your Haematology department would monitor you three-monthly for a year.

I hope you get some answers and start to feel better soon.

Love and hugs,

Cx

Have you tried speaking to the Info Line Nurses – they are very knowledgeable and may be able to explain what your dad can expect to experience on this new drug regime ?

Sending love and hugs,

C xx

The difference between MGUS and Smouldering Myeloma relates to certain criteria (you can find elsewhere on this website) but I would  recommend you contact your GP and ask  if you should to go back to Haematology.

You say you are awaiting repeat test results s…[Read more]

So glad you got your SCT over and are home for Christmas 🙂

Take care

Cx

I don’t know the criteria for bone marrow biopsy but my pp level was 27 at referral.

Initially at the end 2012, I was diagnosed with iron deficient anaemia. No one had an explanation for the pains I had then in my legs – I do alot of exercise but it wasn’t muscle pain. My physio/osteopath was baffled too.…[Read more]

Do you know what your paraprotein  (pp) level was in these tests? If it is low as you said your Gp may have decided to retest and then refer you onto haematology or he may have spoken to them already.

Either way if you’re unhappy/bewildered/ still feeling unwell I would suggest you go back and clarify what is going on at your…[Read more]

It may be worth speaking to one of the nurses on the Infoline – they may be able to help you.

Good luck,

C x

I’m sorry to hear about your diagnosis and also your on going symptoms.

Although the medical definition of MGUS says it’s symptomless, lots of people who suffer from it do experience symptoms so please don’t think you are alone. In fact I recognise some of the ones you describe myself!

The leaflet Ian mentions is very informative…[Read more]

Great to hear from you and thank you so much for this information.

I wish you a long and happy remission!

Best wishes

C x

Good to see you on here again – & even better to hear your are off on your travels again!
Have a great time!
C x

One of the best stress management books I have read is The Chimp Paradox. You can dip in & out of it but I have really enjoyed it as well as finding it useful. Mindfulness techniques have helped me too .

I’m a smoulderer who takes curcumin ( plus some other supplements.) As Rebecca astutely says, I like the idea I’m being proactive. My…[Read more]

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]

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]

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]

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

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]

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

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]

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]

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]

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]

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]

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

Sending get well wishes,

C xx

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]

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]

Stay positive – we are rooting for you!

Sending love & hugs,

C xx

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

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

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

Sending love & hugs

C xx

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

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]

xx

As the time for my monitoring appointment approaches, I do as asked & go to the hospital for the necessary blood tests. When I went I  felt something was missing – & asked them if I could check what was being done? “Definitely NOT!!!” I…[Read more]

I’m afraid I can’t help you but if you ring the Myeloma Infoline I’m sure one of the nurses will be able to.

I hope all goes well on the 18th

Cx

Thank you for posting this. Please get well soon!

Love & hugs,

Cxx

We’ve never “spoken” but I’m one of the “newbies” who have read your  previous posts with interest since I joined the forum & been very, very grateful to learn from yours & Slim’s journey  & experiences. It has particular resonance for me as I’m not that far away from you in Kent.

Thank you for coming back onto the forum to update us o…[Read more]

How are you?

Sending love & hugs
C x

Thank you for sharing your experience – take it easy & take care of yourself as you build your strength back up.

Cx

Could you talk to your GP  about feeling breathless while the hospital gets itself organised? I think most people get their first haematology appointment within 10 days or so of the initial findings – I im…[Read more]

It does seem sadly to be a bit of a treatment/postcode lottery out there which is why this forum is so useful & why we need to support Myeloma UK to help them keep campaigning on our behalf. We owe it to ourselves to keep asking…[Read more]

The Helpline nurses can supply you with a list of leading myeloma specialists/units if you want one.

I am monitored at a small haematology team at a unit in Kent & I am intrigued by the variety of approaches everyone on here describes. I think the protocols are determined by local policy & funding – my unit for example does not routinely…[Read more]