Just Diagnosed

This topic contains 41 replies, has 6 voices, and was last updated by  taffd 4 years, 2 months ago.

Viewing 15 posts - 1 through 15 (of 42 total)
  • Author
    Posts
  • #129820

    taffd
    Participant

    Hello to all,

    61 year old male, with history of COPD, bone pain, rectal bleeding, anaemia, fatigue. Recent blood tests for anaemia showed a paraprotein level of 60 and Hb of 7.2. Tranfused two units of blood and urine test sent off. Urine test result virtually confirmed myeloma and triggered the two week rule. I have my first consultation with a haematologist tomorrow 3/10/16. No idea whether it’s just an initial talk or if any tests will happen.

    My walking, which was already bad, has got worse; only able to manage a few steps with crutches. Bone pain fairly severe in hip/pelvis on left side and chest/ribs. Long history of lower back pain.

    I’ve no idea of how long I might have had this but hip pain has been fairly severe for over nine months. It’s supposedly been a result of mechanical back pain.

    Mentally, I seem to be fairly laid back about things so far. Been on duloxetine for chronic pain/mild depression for ages. I have had low mood but it’s gone and forgotten withing seconds. Blessed with a really, really bad memory, long and short term so tend to literally live in the moment. Haven’t found myself pondering at all. Sometimes it all seems a bit surreal or unreal but in general, it’s sinking in slowly.

    Anyway, that’s about it for me, my best to you all.

    #129821

    louishenry
    Participant

    Sorry you’ve had to find your way to this site, which is definitely the clearest and most informative place. I hope your appointment tomorrow goes well. If you can just stay laid back and in the moment you’ll cope well with the treatment. They will probably get the myeloma under control fairly quickly but bone damage is harder to deal with. I’m 64 and have had it for nearly two years. About a year in treatment, occasionally rough, mostly annoying but not stopping normal life. I’m now enjoying remission and almost back to normal. Let us know how you get on.

    #129822

    taffd
    Participant

    Thanks for that Louis. I’ll continue to post as new info or changes occur. Just to add, I’ve got a list of questions for the initial consultation and a pad to keep a record of everything. Will also record consultation if allowed.

    Keep on keeping on

    Taff

    #129823

    davidainsdale
    Participant

    Hi Taff, just to say that there is plenty of help available through Myeloma UK.  I found the information leaflets really useful as well as talking to the nurses on the Helpline. I would also recommend speaking to other myeloma patients, either at one of the local support groups or at a patient information day.

    Hope this helps.
    David S

    #129829

    taffd
    Participant

    Thanks David.

    Have just had my initial consultation; the doc says although the blood and urine tests so far point to myeloma, it’s can’t be properly confirmed yet due to my other ailments. But he thinks it is myeloma.

    Got the bone marrow biopsy next Monday but may get it brought forward to Thursday and should be called asap for MRI.

    Keep on keeping on

    Taff

    #129831

    davidainsdale
    Participant

    Hi Taff,

    Good to hear you are making progress through the system.  For me the bone marrow biopsy wasn’t too bad but expect to feel bruised for a few days afterwards!

    They say that having myeloma is like being in a marathon, not a sprint, to put it into perspective!

    Nice ,warm sunny day here near Liverpool, what more could you ask.

    All the best

    David

     

     

    #129835

    taffd
    Participant

    Hi All,

    Just been perusing the net while having a conversation with daughter. She’s annoyed that official confirmation won’t be until after biopsy and scan. I’m going along with assuming it’s confirmed and anything less will be a bonus.

    She’s also annoyed that I was originally told by phone, as in, ‘One of your blood test results is high. In fact it’s very high, have you heard of multiple myeloma? No? It’s a sort of blood cancer.’

    Apparently lots of people experience anger, fear and suchlike. Me, I said ‘Thanks for letting me know straight away’.

    I get the feeling I must be a bit strange for taking it calmly and asking what the next step was.

    Anybody like to share how they got told and how they felt?

    #129836

    tonyf
    Participant

    Hiya Taff, sorry to have to welcome you to this “happy band” I think that the bone marrow biopsy is the last test needed to confirm yes or no to myeloma. I attend the Leicester Royal Infirmary, when having a biopsy the patient is given gas and air, so you are as high as a kite and not aware of anything going on, you can but ask!

    I like your attitude, like you I take it all calmly, smile a lot, put myself in the hands of the experts, ask lots of questions. I was told by the consultant at the hospital, immediately referred to the specialist nurse, was put onto the myeloma X1 trial ( finished now I think ) had a stem cell transplant, got 26 months remission,  a year of a much less aggressive drug treatment followed by a second stem cell transplant in March this year. Not on any treatment now, was told to go out and enjoy life and see you in 3 months time. By the way I was diagnosed age 68, had my second SCT at almost 72.

    Hope all goes well.

    Tony F

     

     

    #129837

    taffd
    Participant

    Hi Tony,

    Cheers for that, hope you keep on keeping on.

    And David, thanks for your input as well, sorry I’m a bit late answering your post.

    #129898

    Laurence
    Participant

    Hi Tony

    Yes I was told over the phone by the duty doctor from my GP surgery on that day. Told I had a form of cancer called Myeloma but she didn’t know anything about it and I should “Google it”. The GP who was monitoring me didn’t work that day but she knew my results would be back so she came in to view and called me an hour later to apologise on behalf of the surgery and arrange an appointment for the following day with her.

    I was diagnosed in March 2010 but probably had it for over 6 months as it fractured 11 vertebrae. Had my first SCT at Kings in March 2011 and a second one in March 2016 again at Kings, second time isn’t as tolerable as the first – body says I’ve been through this before. I’m 65 and active although lost six inches in height due to vertebrae fractures – two have fused together as they healed -which means the back will let you know when enough is enough each day.

    Hope all goes well

    Regards
    Laurence

    #129957

    taffd
    Participant

    Hi All,

    Just had the bone marrow biopsy; fairly painless except for the last bit. Results apparently take two to three weeks. However, next consult with haematologist is next Monday.

    Seems odd. Bone biopsy is supposed to confirm or not but the nurse who did the test seemed to suggest it was just an added extra.

    Just a matter of waiting, I suppose, which has been the hardest part so far.

    My best to all

    Taff.

    #129958

    davidainsdale
    Participant

    Hi Taff

    I may be wrong but I believe that the biopsy may provide the medics with additional diagnostic information, as well as confirming the diagnosis or otherwise.  It may depend on the lab and what is being asked for etc.  Perhaps something to ask the experts?
    Hope this helps.
    David

    #129980

    taffd
    Participant

    Hi David,

    Could be that the MRI scan, x-rays and bloods give sufficient for diagnosis and the biopsy adds detail such as the specific type or stage.

    On the bright side I got an information pack today that my daughter asked for. From this very site. I think it’ll take all week to read it all.

    I’d already started a diary, but the one delivered is very comprehensive and well laid out.

    What I have noticed is that I’ve had some of the side effects of myeloma or it’s treatment as part of my existing medical problems.

    Had a day of low mood the other day with no apparent reason for it. Usually only feel low for a few seconds and it’s gone. Very strange.

    All the best

    Taff

    #131476

    taffd
    Participant

    Hi All, a quick update –

    Finished fourth cycle of CTD today and had a consult yesterday. Apparently all my bloods are looking spiffing and although no figures were available for paraproteins, overall protein level had come way down and thus the paraproteins will have done, meaning that I’ve responded well so far and the myeloma cells have been effectively switched off.

    I’ve been fairly immobile for the last 3/4 months and now’s the time to try and strengthen the bones by trying to walk about a bit every day and start getting out and about. I’ve gone from being unable to move unaided to pottering about with a wheely frame.

    After chemo finishes in 6 weeks, I’ve got radiotherapy on a fist-sized myeloma in the left pelvis and I’ve got a tennis ball-size mass in my pelvis that is being investigated. Possibly some form of scar tissue from a rectopexy in 2002. I also had a prophylactic nail put in my left femur because it was about to break which has worked well.

    I’ve been more or less pain free thanks to prodigious amounts of morphine, tablet and oral, although there is breakthrough pain now and then. Pain has changed to stiffness and a feeling of being permanently uncomfortable. Am unable to sleep in bed due to acid reflux and use my reclining chair.

    My appetite is up and down and everything tastes wrong or horrible except for weetabix and rice pudding. Sometimes it’s difficult to swallow.

    In general then, although I feel like shit, things are looking positive thus far and best of all –

    I ent ded yet.

    Best Regards to everyone

    Taff

    #131478

    davidainsdale
    Participant

    Hi Taff

    Good to hear that you have responded well to the treatment and the myeloma is under control, just the colateral damage to sort out now.

    It may help you to know that you are not alone in having mobility problems, it seems very common with myeloma unfortunately.  I was pretty much in a wheelchair for six months myself and unable to move due to spinal collapse and spinal cord compression. Glad to say that quality of life for me is much better now but it took a lot of time, effort and patience to build up the strength in my muscles and get back on my feet again.  Google maps is great for tracking progress.  50m one day, 100m the next and so on.

    Macmillan have lots of usual things going on so it might be worth asking them what is available to help you above and beyond what the NHS has to offer.

    Acid reflux also sounds familiar, with me it is self inflicted if I have a beer or glass of wine in the evening. I find that a glass of milk usually sorts it out, if all else fails I have a stock of Lanzoprozal which work well.

    With luck, we will have some fine weather and daffodils soon.

    Hope this helps.
    David

Viewing 15 posts - 1 through 15 (of 42 total)

You must be logged in to reply to this topic.