This topic contains 95 replies, has 23 voices, and was last updated by  Perkymite 8 years, 6 months ago.

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    Morning Andy & Steph
    Many thanks for your reply.
    Gosh, how long did it that them to find out about your MM, you would think with all the technology they have now they would have found it sooner, and three days before your wedding. Sorry to hear that the first round of treatment did not work for you. Having cancer is one thing but to have the added complication of the bone disease is another. One thing I am going to do is spend a lot more time with my family, it makes you realise what is really important in your life and it takes something like this to realise it.
    I wish you all the best, and yes you are right everyday is a gift.



    Morning Mavis
    Thanks for your reply.
    One thing I have learnt so far is that I still have a lot to learn about Myeloma, only going to the hospital once a month, it seems that there is no one to talk to, but having said that, I have only been twice to see the consultant and the nurses are very busy, so I will be on this forum many times, searching for answers.
    Many thanks for you input



    Hi Richard
    You are correct about the exclusive club and it is nice being on this forum with such lovely people, it is a sense of belonging.
    Unfortunately I am not a fan of rides, so I shall wait with bated breath to see what rides are waiting for me.
    Thanks for the welcome!!!



    Hi Ann
    Simply put the Para protein is the rougue cell / bug that devours the good cells in the bone marrow & also attacks the bones like woodworm , ie eats them away
    This can go on for quite a long time while you can feel perfectly healthy with no reason to go to the docs.
    On discovery my pp was 43 , pre SCT just under 4
    The trick is via, in my case & lots of others for the CDT to get it to as near zero as possible , then for the SCT to cause the final removal of all traces of the beast , I called it my piraรฑa .
    I got a very good booklet from the McMillan , also you can download loads of info from Myeloma UK , you must have the knowledge = power
    I found that after four days on steroids, 40 mg/ day , on the 5th day I stil had my brain but no body , soon passed
    All in all this MM is a bit of a bugger to put it mildly , but one way or the other we learn to cope & adapt
    Go to the consultant with a list of questions , write the answered down & don't take no for an answer , that's why you need to get gen'd up ASAP !
    Stay positive



    Hi Ann just been reading all your messages what a lot lol, so I thought I'd just say hello too ๐Ÿ™‚
    I was diagnosed 2 years gone March after nearly a year of rib back and hip pain going back and forward to doctors being fob'd off with muscle pain and in the end rhumatisim !!!!! Till in the end a blood result came back and the big shock MM witch like you I'd never heard of. Got told later a normal GP will come into contact with myeloma maybe once in their life time so it is hard to diagnose ????
    Anyway started right away on thalidomide steroids and cemo tablets then after 5 months doc said my pp had come down enough to have my stem cell transplant. I had that in the October over at Newcastle as I live in the lake district it was a long way from home so didn't get many visitors but after the first week you can't be bothered with anyone really, once your ???? Can't remember the name starts going up you can go home witch is brill nothing like your own bed.
    You feel crap for a few weeks tired and You'v to keep away from any infections as your immune system's none exsitent, after that the only problem I had was itchy spots .
    Now I'm a year and a half in remission had a glitch last year with a broken hip but didn't know how I'd done it and it healed itself thank god didn't fancy a hip operation !!!! A month ago had a scare thinking MM was back as I had pain in my back and ribs but then a rash appear 'd and relised it was shingles not nice !!!!
    At the moment I'm ok had my 57 birthday last week looking forward to going to Harrogate spring flower show on Saturday just take each day as it comes.
    Gave up work as I couldn't do it any more and why kill myself as my life is going to be shorter ???? Luckily I get DLA so manage on that money.
    Sorry I seam to be going on and on so I'll finish now and say bye for now.



    Hi Ann

    I hope your appointment with your consultant goes well this week and you learn the results of your MRI as well as asking the many questions which no doubt you have thought about since your last visit. As regards planning lots of family events this year, before you actually book anything in advance, I would see whether you possibly suffer from any side effects from the drugs and myeloma itself. Some myeloma patients manage to sail through their treatment and continue to work, others appear to be less fortunate and suffer quite a few side problems.

    The tiredness which you are experiencing at the moment might be part of your sleeping difficulties coping with your back pain, or your current drugs, but fatigue can also be a major side effect of myeloma. I still sleep 10-12 hours per night since my SCT and find I have little energy to undertake many activities during the day. Bone pain results in me not carrying/lifting any heavy items which is difficult when you try to undertake the usual activities such as shopping, cooking, cleaning and other household chores. Even pushing the vacuum cleaner around is too exhausting and causes bone pain.

    Ask your consultant/nurse whether there are any local support group meetings in your area for myeloma patients/carers which you could be able to attend to discuss any myeloma issues with other people.

    Do you know whether you be going through a stem cell transplant as part of your myeloma treatment?

    Jan x



    Evening Jan
    Many thanks for your reply and your very good comments on my plans for family events. I think you are right not to plan to much as you don't know how you are going to be feeling from one day to the next. I guess I shall just take it one day at a time.
    The plans are for me to have SCT . I went to see the consultant today and he was pleased with my progress. He has now doubled my thalidomide and with steroids to be taken every Friday , no mention yet when I will have Chemo.
    The MRI scan I had only showed that one vertebrae is damaged, so that is good news.
    All the best



    Hello Sandra
    Thanks for your message.
    It was interesting reading your story, glad things are Working out for you. I too went to the doctors many times I got the feeling that they thought I was having them on.
    My consultant today has doubled up on my thalidomide and I still take steroids every Friday, but still no mention of chemo, as with many messages everyone is different with their treatment.
    Are they going to do anything about your bone pain. I am meant to have radiotherapy on my back to help with the pain as the "cement" treatment is a no, no for myeloma patients, well at the stage I am at anyway.



    Evening Peter
    Thanks for the info, things are a bit clearer now.
    Went to the consultant today my pp was 34.4 at the start not sure what it was toady but the consultant said it had gone down, which is good news. He also told me that my pp has to be at least half of 34.4 before I can be considered for SCT. I thought I had read on several messages that it should be nearly "0" before SCT.
    I feel now that I still have a lot to learn, oh well , back to my research on MM.
    Take care



    Hi Ann
    My pp went down steadily throughout the six cycles , approx. 25% per cycle to arrive at a final 3.8
    But everybody is different , zero is nice but not necessary before your SCT
    I was told by Christie's clinical director that people seemed to get a better recovery if the pp fell steadily through the six cycles rather than falling to zero or very near zero in just a few cycles instead of the full six , not sure why
    My haematologist told me a few days ago that I had standard MM , which was easier to cure , never heard of standard myeloma before , next time I will ask for more info , unless anyone reading this knows .
    Keep up the research



    Hi Ann

    Sorry to go through your thread to reply to Peter!

    Peter, did your Consulstant really say "cure"?!!!!

    Do hope your pain soon subsides.





    Hi Mavis
    I'm sure she said cure , but equally sure she meant remission , but maybe she knows someting we don't
    I will torture more info out of her next Weds 1st May & advise
    She seems very well connected & travels all over the world to seminars etc
    Together with the Christie the team have been superb for me
    Most of my pain is due to a congenital spine problem , after several ops over the last 50 years ! Pain Probably due to scar tissue agivating the nerves in L5 vertebrae , epidural s are great help , just booked another today , a quick fix for a few months
    Steroids during the CDT were really great for me , pain free for four days , twice per three weeks !
    MM has given me two small lesions in left hip , so compared to some I got away very lightly
    No gain without pain or as some souls say no upwards without the onwards !



    Hi Ann

    Good news about your MRI scan results showing damage to only one vertebra. Hopefully you will be able to sleep better when the bones start to heal.

    You mention you are on CTD treatment and say you are taking thalidomide and dex steroids, but you do not mention the cyclophosphamide drug which is the initial chemotherapy part of the treatment. If you progress onto a SCT after your cycles of CTD are finished, then much higher doses
    of chemotherapy are administered prior to the transplant.

    Jan x



    Hello again Ann Jan has said just what I was thinking !!!!! I thought you would have been on cemo tablets now??? Then as she says you get a big dose just before your transplant, when I'm afraid your hair will start to come out ๐Ÿ™ but the good news is it comes back curly ๐Ÿ™‚
    As for my pain I just take pain killers when it's really bad. It's true every case is different. I was worried sick about my transplant but it wasn't that bad a few days feeling and being sick and really bad runs for about 2 weeks but hey we can put up with that if it's going to make us feel better in the end !!!!
    Any way you take care and and if you'v any more question's just ask away.
    Sandra x



    Hi Ann,
    Like all before welcome to our club to which we all wish we never had to join, I was diagnosed by my GP which a consultant at Kings told me was very unusual as most GP's only have one myeloma patient in their lifetime as GP's,but luckily for me mine was brilliant, I started with back pain in November 2010 which I knew was not "NORMAL BACKPAIN", I also had loads of other problems which were put down to my age and being a woman aged 52!!!!
    I had a fractured T11 vertabrea whilst in bed in April 2011 which both my husband and I heard go "crack" then I think the whole world must have heard me scream with pain!!!
    I was actually diagnosed on 3rd July 2011, by then I was just so happy to know they knew what was wrong with me I did not take in the word cancer!
    I like you slept upright in a chair in the front room for several months and I have to admit spent many hours in tears asking why I had to have such a painfull cancer!
    I was on such high pain killers but saw a brilliant pain specialist who told me I must try and tollerate the pain and get the levels of medication down as the pain will only worsen and if I am already on the top amount I will have no where to go!
    Then I was offered radiation to which I was told could offer 3 out comes, no help at all with pain, a little pain relief or total pain relief ! well I decided I would give it a try as AT THIS TIME I JUST WANTED TO BE ABLE TO GET UPSTAIRS TO BED! I was one of the lucky ones and the treatment took my pain away completetly, when I went back to see the specialist who referred me for this his mouth dropped open – I kid you not – when I walked in to see him – he said I was unrecognisable as the previously stooped over and in tremendous pain patient he first saw and remembered. So if you are given this chance I say take it.
    I still suffer pain on walking especially in the cold weather but can manage this pain with paracetamols! They cannot guarantee how long the raditherapy will last, I just thank the nhs every day that I am no longer relient on strong painkillers.
    I first moved up one flight of stairs to bed and used to stand at the bottom of the stairs to our loft bedroom wistfully thinking will I ever manage to sleep up there again, well today I sleep up there and have adjusted to my new way of life and have found this site so usefull in making me see I have a furture in which I aim to do as much as I can and make the most of it.
    I wish you the best with your journey, you will find the people on here so friendly and helpfull, thank goodness for myekoma uk.
    Love Babs

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