Advice welcome

This topic contains 19 replies, has 10 voices, and was last updated by  Harmony 7 years, 6 months ago.

Viewing 15 posts - 1 through 15 (of 20 total)
  • Author
    Posts
  • #119854

    cygnet
    Participant

    Hi all – I’m hoping for some help!

    I have an appt with the consultant haematologist on Wednesday after blood tests done by my neurologist showed high protein levels with ” a strong suspicion of myeloma”. This first mention of myeloma was in a letter which came with my haematology appt!!!

    I’ve had more blood tests ahead of Wed’s appt but what should I expect at this meeting? If I need a bone marrow biopsy how soon is this likely to happen & would those of you who’ve had it recommend conscious sedation?

    Thanks in advance for any help/ advice – I have only spoken to the Info Line since I received this letter although I am seeing my GP on Monday.

    #119858

    Harmony
    Participant

    Hi,
    I remember being in your situation last year and I hope I can reassure you by saying that the anxiety that you are experiencing now is far worse than the reality. I would recommend taking someone to the appt with you as it’s hard to take everything in. My consultant was very positive and talked about how treatable myeloma is nowadays. She then told me my paraprotein level, which was 20.

    I was given the option of an immediate skeletal x-ray and this pleased me because it felt good to get this out of the way. I was then booked in for the bone marrow biopsy 5 days later. This procedure was okay-I recommend bringing your ipod with your favourite music so that you can zone out- I sang like a loony!! I was conscious- conscious sedation is fine. I didn’t feel any pain – just a tugging sensation during the procedure and a dull ache afterwards. I found it all a bit emotional -but not really painful.

    I wish you well -just keep getting up and carrying on!
    Chrissie.x

    #119859

    cygnet
    Participant

    Hi Chrissie,

    Thanks for this very welcome reply. I feel very alone with this & the timing is terrible as I am currently spending every weekend crossing the country south-east to south west as my mum is in the final stages of pancreatic cancer.

    Can I please ask did you have conscious sedation or local anaesthetic? And could you return to work the day after the biopsy?

    Many thanks, xx

     

    #119861

    noel
    Participant

    Hi, I was diagnosed about 18 months ago and so have been where you are now also. A marrow biopsy will happen pretty quick; I had my first one done within a week of my first haematologist appointment. I’ve now had five biopsy’s and have had local every time.

    Once the procedure starts it only takes about five minutes and in my experience the pain was minimal; a little stinging when the local goes in and a little pain for a few seconds when taking the marrow blood sample. You may have some pain for a few days afterwards but it’s manageable with paracetamol.

    Try to be positive, you’re in good hands,

    Noel.

    #119862

    cygnet
    Participant

    Hi Noel & thank you for this  reassuring info.

    If I understand your history correctly, you are now preparing for an allograft transplant – I wish you well.

    Can I ask a few more questions; was your bone pain persistent or did it flare & then subside?Also have you managed to keep working &/or exercising around your treatment. And has treatment stopped you driving – even for a short time?

    I am 52 – I have been to & fro my GP for about 2 years with what now seem to be  ticking the box for Myeloma symptoms. That said they previously investigated me for head cancer, possible brain tumour & then suggested it  might be MS! It is the neurologist who has picked up the paraprotein & referred me to haematology.

    I hope I am in safe hands but I will talk to my GP about that later as tactfully as I can. My local hospital is in NHS special measures.

    Thank you so much for your reply

    Grateful thanks & wishing you well,

    Cx

    #119865

    noel
    Participant

    Hi Cygnet,

    My bone pain did eventually become persistent but it took it about seven months to get to that point. In the beginning the pain would last a few days, then it was weeks and it would be quite severe. My bone pain was mainly in the sternum and the ribs and before treatment started I was also beginning to feel back pain. I worked in a factory so I was unable to work at this time. Treatment never stopped me driving but the bone pain almost did; remember though that everyone’s condition is different as well as their reaction to treatment so it’s difficult to say one way or the other how it will affect you.

    With regards to your hospital all I can say is listen carefully to what they say regarding diagnosis and treatments. If it is Myeloma then you need to see a myeloma specialist which may mean you being referred to another hospital and you should ask about taking part in clinical trials as this will give you access to new drugs or new combinations of drugs. I live in Luton and the Haematologist here immediately referred me to a specialist in London and all my treatment so far has been carried out there.

    I hope all goes well for you, try to stay positive,

    Noel

    #119870

    Harmony
    Participant

    Hi Cygnet,

    Excuse my ignorance but I had to google ‘conscious sedation’! No, I didn’t have it; I had a combination of local anaesthetic and Bob Marley singing ‘three little birds’ on the Ipod. I returned to work the next day.

    Sorry to hear about your mum – I hope that she is at peace and as pain-free as possible. Sometimes life sets us enormous challenges but dark nights are always eventually followed by bright days.

    God Bless you.

    #119873

    cygnet
    Participant

    Hi Chrissie & Noel

    Thank you both for this – I really appreciate it. Both of you reinforce my thoughts that if I need a bone marrow biopsy I will sally forth with a local & loud music!

    I have just been to see my lovely GP who has looked at the bloods with me & told me not to panic, get some sleep & wait & see what the appt brings. All three of you have made me feel much better & less alone.

    Noel – thank you for your reassurance re referral onto a  myeloma specialist & for sharing your experience of how your bone pain progressed. Mine has never been persistent for longer than 10 days – more flaring but I understand about it  impacting on driving. By saying that was more than an issue than treatment, you have made me feel tons better!

    Thank you Chrissie for your kind words too –

    I wish you both well & will let you know how I get on

    C xx

     

     

    #119876

    Anonymous

    Hi cygnet,

    just reading your post, biopsy done with local anaesthetic and my robbie dvd last 8 mins 44secs and to be honest didn’t feel much at all and I went back to my volunteer job at lunchtime was advised not to lift anything heavy for a couple of days just found it uncomfortable laying on my back for a few days.

    get your list of questions ready for consultant and don’t be scared to ask them, will be thinking of you as I have only just been diagnosed with smouldering myeloma this October but feeling more like myself again now , still have why me days but in general life is very much the same as before.

    hugs Helen

    #119878

    cygnet
    Participant

    Hi Helen,

    Thanks for this – I feel so much better tonight which is helping me get a “sensible head” on ready for my appt:)

    Everyone who has replied has been so supportive – as was my GP, who has been there for me through previous  not-so-tactful letters from the hospital. In fact we even found ourselves laughing about it as he pointed out the suggestion that I had a brain tumour ( which was not found) multiple sclerosis ( seemingly ruled out). He accessed the blood tests which had led to the haematology referral & yes there were alot of red exclamation marks indicating something but I have taken his advice & tried to stop worrying/panicking. I can’t change my blood chemistry!

    I’m glad you’re starting to recover from the bombshell that was your diagnosis. It sounds like you’re doing everything right to keep as well as you can.

    Love & hugs,

    C x

     

     

    #119897

    keithmt
    Participant

    Hi Cygnet,

    Your post brought back my memories of being told I had Myeloma in July 2013. You’ll find many posts on the forum that will scare you (well, they did me) but the one running theme is that everyone is different. Don’t focus on the scary stories but take heart from the positive ones.

    When diagnosed, my only symptoms were pins and needles in my feet but I was told that my MM was at Stage 2 with a paraprotein count of 57. I had 6 cycles of CDT drugs followed by an autologous SCT and BINGO ! In complete remission since July 2014 and enjoying life to the full.

    I cannot fault the overall treatment I’ve had from the NHS, everything kicked in like clockwork. As for your biopsy, I’d suggest having whatever your hospital offer you. If it is just a local anaesthetic then give that a go as many people find it perfectly bearable, just like having a toothache for a few minutes.

    I wish you all the best for the journey that’s ahead of you. Mine was a breeze (OK, with a few rough days) and my one piece of advice is to keep positive and remember that you will come through this.

    Big hugs.

    Keith x

    #119943

    hi Keith.

    I interested in your experience of SCT. I have just fininshed cycle 4 CDT and dr says I should think about SCT or not. It seems to involve being in  hospital for 3 weeks and a harsh chemo.

    #119946

    keithmt
    Participant

    Hi Johnny

    By the end of my 6th cycle my paraproteins were down from 57 at diagnosis to just 2. My consultant told me that SCT would give me a much greater chance of longer remission so for me, it was a no-brainer.

    My stem cell collection went very well as other was only in for one day. I think a week or so later I had my huge dose of Melphalan followed by my stem cell transplant. Yes, the Melphalan was a tough ride but my planned stay in hospital for 2-3 weeks actually turned out to be only 6 days when I was considered safe enough (from an infection point of view) to go home. The next few weeks I had no appetite but gradually felt better and since all of that treatment my paraproteins have been undetectable.

    FYI I’m 63 years old and of medium fitness which may effect how you judge my experience against yours.

    All the best

    Keith

    #119952

    Thanks for you reply. Other people  on the forum seem positive about the treatment too. Tendacy towards, at the moment, but will see. Im 61 so not much difference there, on my 5th cycle.

    John

    #119954

    lynda1
    Participant

    My husband turned 50 on Monday, today he was diagnosed with myeloma. I am absolutley terrifed and shell shocked. I have no idea where to turn

Viewing 15 posts - 1 through 15 (of 20 total)

You must be logged in to reply to this topic.