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

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  • #87558

    Anonymous

    Thanks again Peter. I have never heard of standard Myeloma before, you would like to think that all consultants would use the same language like Standard, Staging etc it is bad enough to get your head around all the other things Myeloma brings…..
    Ann
    xx

    #87560

    Anonymous

    Afternoon Jan
    I am really annoyed with myself, when I saw the consultant yesterday, he did not say anything about Chemo, all he done was to double up on my thalidomide and I never asked about Chemo, not sure why I never asked, I think I was so pleased with the vertebrae news.
    At the moment all I am Taking is , two x 50mg of Thalidomide(this was upped yesterday from one) and 10x2mg of Dexamethasone taken all at once on a Friday. But NO chemo at present. Any ideas?
    Ann
    xx

    #87561

    janw
    Participant

    Afternoon Ann

    I would phone up your support myeloma nurse at your hospital to discuss your current treatment. Ask when the cyclophosphamide part of your CTD regime will begin, when you are scheduled to take your second bisphosphonate and at the same time you could ask whether there are going to be other drugs introduced into your cycles such as a low dose antibiotic to fight off any bacteria. Because I regularly used to suffer with cold sores when feeling low, I was also prescribed anti viral drugs to be used in case of an outbreak.

    Jan x

    #87574

    Anonymous

    Afternoon Babs
    Thanks for your welcome and reply.
    I can only imagine your pain when you damaged your vertebrae in bed, it must have been very scary as well.
    It is strange why they can't diagnose Myeloma faster than they do. It took about 6 trips to the doctors and many blood tests to find mine. It was only that my doctor noticed that my Immunoglobulin level was a little high she decided to do a blood test for that.
    Glad you have managed to get upstairs to go to bed now, just the thought of lying down in bed at the moment makes my toes curl, although I do miss having a cuddle with my husband.
    I saw my consultant yesterday and he is going to organise radiotherapy for my back, so hopefully I will have the same outcome as you( fingers crossed).
    As you say this site is brilliant and so many friendly people.
    Take Care
    Love
    Ann
    xx

    #87562

    Anonymous

    Hi Jan
    Yes thanks, I may well do that on Monday, I just can't believe I never asked. Maybe the drugs are affecting my brain……….
    I was going to ask my doctor if I could have some antibiotics ready at home in case of infection, as I have already had chest infection which took about 17 day to clear.
    Have a good weekend
    Ann
    Xx

    #87551

    Anonymous

    Hi Sandra
    Thanks for the reply……
    Jan has just suggested phoning my support myeloma nurse, which I will do on Monday. At the beginning the consultant did say he would start me of on chemo followed by steroids and thalidomide , I do find it all a bit puzzling …..
    Not sure if I like the fact that your hair comes back curly, as I spend most mornings using straighteners on mine ha!!, but I guess if that is the only problem I will have, I will not complain.
    Have a good weekend, the weather looks good
    Take Care
    Ann
    xx

    #87563

    Babs
    Participant

    Hi Ann,
    It might be that you have been diagnosed at early stage and this is why chemo not yet started, can you not ring the team and ask? , we all remember questions we wish we had asked after leaving the consultants appointment, after all there is a lot to take in.
    I must admit that I was so ill at diagnosis that I had no idea what I was taking, I just remember going to the hospital with my husband and they gave us a large carrier bag full of the drugs I was to take until my next hospital appointment, the chemo tablet I took every Friday, my husband and daughter went out and bought a white board and pen and wrote down all the tablets and when to take them, more computer literate people use a spread sheet but we are not that good :-). I do remember sitting in the arm chair , like a zombie, so drugged up and honestly thinking I would die I felt so ill! The pain was so bad I would not let anyone near me and every bump in the road made me scream, looking back other drivers must have been really cross as my poor husband drove so gingerly! 🙂
    The good news is that I am now so much better and although the five months of having the initial 6 courses of chemo with all the effects of the combination of pills was not easy and very lonely ( if chemo is given introvenously at least you get time to meet other cancer sufferers.)all us Myeloma sufferers only get to meet other people when in for the Zometa infusion and to collect our pills,and this is only for a short time. That is why this site is so good, I only found it after about 7 months and when I was well enough to look at it, I had been told of it but was given so much info initially that it was overlooked.
    I kept a full diary of my initial journey but have filed it away as not required any more, seems like a dream now.
    I too remember just wanting to have a cuddle from my husband, but he was too frightened of hurting me, and remember the difficulty in even turning over in bed, unfortunately due to the damage this MM did to my spine – I am 3 inches shorter due to the collapse- I can now turn over but when I do it still hurts, but is bearable, I land on the bed with an almighty thud, not very ladylike, haven't slept on my stomach since before diagnosis and am reliant on a bed guard which I use to pull myself up with, but hey I am alive and determined to live my life to the full with this cancer.
    The main problem now is that after all the treatment and SCT which I had March 2012, I am in full partial remission and look normal to others !. Only my full head of curly dark hair and my walking stick tell of my cancer, the cold weather plays havoc with the bones but hey the warmer weather is on its way.
    Since joining this site and reading what others have managed since being diagnosed has helped me realize there is life after being diagnosed with myeloma.
    Love Babs x

    #87564

    Anonymous

    Dear Babs
    It does seem funny in your reply, we have much in common even with the spread sheet, my husband done my spreadsheet for me, as I have no clue how to do one , even though my job is sales/customer service, I have been shown but somehow it never stays in my head, so the white board would have been my choice. Regarding the bump in the roads my husband did not see a ramp coming up in the road and drove over it not fast, but enough to make me shout out, bless him…. He has always says that I have been a challenge to him all the years we have been together ( nearly 40 years) but even more so now ha!
    I never thought of the bed guard , a great idea, I may get one, when I eventually start going to bed.
    Myeloma certainly does change your outlook on life and it does feel lonely as you do not get to see anyone else.
    I see on this site that they have info days, the one nearest to me is Bournmouth and in June this year, so I will go to that, all information is greatly received.
    I am so glad you are doing well, it gives hope to others.
    Love
    Ann
    xx

    #87575

    janw
    Participant

    Hi Ann

    It is strange, yet comforting, that we all experience so many similar situations with myeloma. My husband also arranged a spread sheet for each cycle of tablets. We now have a graph to monitor my light chain levels! But the most useful gift which I was given by my mom was an A5 pill box in which I could place a week's supply of tablets separating them between four different times during the day. From the box, I could see at a glance whether I had actually taken the required tablets because you do tend to forget whether you have taken them or not after many cycles.

    I purchased a bed back support which I layered with pillows so that I could continue to sleep or sit up comfortably in bed whilst my back was so painful. When I developed some sores on my backside and elbows during cycles, the district nurse provided a very soft flexible cushion to relieve the pressure on my body. You don't tend to know such items exist until you ask or just stumble across them.

    The information myeloma days are very useful, informative and a great way to meet other local myeloma patients.

    Jan x

    #87565

    Babs
    Participant

    Hi Ann,
    On diagnosis I had daily visits from the district nurses to do my clexane injections, they arranged for the local occupational therapists to come out to see me and they arranged for me to have on loan, toilet raisers, the bed guard, perching stools for the bathroom and kitchen, trolly on wheels,and a man came to put hand rails up the stairs,a grab rail to enable me to get into the bath, they also arranged for me to have a wheelchair. I remember at the time thinking how in just over 9 months my home looked like my late mums disabled flat when she was 85! And I was only 53!
    But now all I have is the wheelchair , bed guard and the perching stool in the bathroom, every thing else which could be has been returned.I use the wheelchair on long walks and to go shopping .
    I think the info days are a good idea, I missed the one near me last year and the year before as both were when I was not well enough to attend, but plan to attend this years.

    Love Babs

    #87576

    PeterJames
    Participant

    Hi Ann
    You are on chemo as you are taking two of the three chemo drugs for the CTD course , you are on T & D but not C !
    You should ask why not , I also took several other drugs some , mostly daily , plus daily injection for DVT
    I was also given two emergency packs of anti bios , plus emergency numbers for advice , also bought thermometers to check temp, if you get an infection , the cut off point for advice is 37.5c, if he goes above this & paracetamol don't work head for hospital ASAP
    Always make a list of questions before you see specialist , otherwise you are bound to forget some
    Re my having standard myeloma , I did a bit of quick research , there are three grades , put very simply they are , very bad , bad & standard , standard being the easiest to treat
    The three types are defined by some chemical measure , none of which I had a clue about
    I took double your dose of dex & thalidomide & I did me no harm , more like the world of good !
    Peter

    #87578

    Perkymite
    Participant

    Hi Jan, I actually use 2 pill boxes. One I keep for pain killers and the other I use for medications.

    Kindest regards – vasbyte

    David

    #87579

    janw
    Participant

    Hi David

    That's a good idea, especially during the times when you have to take quite a few tablets. Jan x

    #87577

    Anonymous

    Hi Peter
    Thanks for the reply…….
    I am going to phone the hospital tomorrow regarding why I am not on the Chemo, but the consultant said that my pp levels had come down from 34.4 which he was pleased about, he said that something must be working to bring it down, that was when he said that he will put my thalidomide up to two tablets a day, as I was only on a small dose, so maybe if the pp levels are coming down without the chemo, he may leave the chemo for now???? who knows . I also have to take aspirin every day for the thalidomide DVT.
    I am going to ask my doctor if I can have a supply of antibiotics on standby.

    Ann
    Xx

    #87580

    dickb
    Participant

    The French (known in Europe for being hypochondriacs) are very much into pill boxes for 7 days dosage and the Germans like them as well, I use a spreadsheet with tick boxes, I only tick when I have actually pulled out the ones to be taken. My wife wants me to have a pill box for holidays and short breaks.

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