mervyn53

  • mervyn53 replied to the topic Remission periods in the forum Treatment 4 years, 10 months ago

    Dear David and Rebecca

    Thank you for these postings. I have read Rebecca’s helpful and perceptive postings over the last few years and found them very helpful.

    I don’t assume anything about remission periods, except that overall there must be the law of diminishing returns. otherwise, doctors would do them again and again.

    In my case I…[Read more]

  • Hi

    I had my first stem cell transplant two years ago. Now my paraproteins have started to go up again and I have signed up for the clinical trial, part of which will be a second stem cell probably in the first quarter of 2018.

    I realise that it cannot be a scientific forecast, but does anyone out there have experience of the relationship between…[Read more]

  • mervyn53 replied to the topic SCT at Southampton. in the forum Newcomers 6 years, 8 months ago

    Hi Jan

    I read this post with interest. I had my first SCT a few months ago and am not feeling too bad apart from the hair loss.

    What makes you say that ‘as I rapidly approach my first relapse’ ?  Your paraproteins have gone up ?

    I ask so that I can watch out for whatever you say the warning sugns are.

    all the best

    Mervyn

  • mervyn53 replied to the topic Initial diagnosis in the forum General 6 years, 8 months ago

    Dear Stanley

    I am in a similar position to you; diagnosed about a year ago and immobile with 3 crushed vertebrae. After 6 cycles of velcade, now two months after SCT and more or less OK.

    For those of us that like(d) going to work, there is a great void, as you say.  This has to be filled and the more time wasted moping about  the house w…[Read more]

  • Hi

    I had a lot of sleepless hours when I was on velcade, dexis etc. The thing that worked for me was a tea called ‘Snore and Peace’ made by the Clipper company.

    Try it. Nothing to lose.

    Good luck

    Mervyn

  • Dear Graeme

    I was taken into Addenbrookes in Cambridge in late Novemeber with 3 crushed vertebrae and paraproteins at 74. After 6 cycles of Velcade and dexis and cyclophosphamide paraproteins were down to 5, but Dr. Crawley advised SCT.

    I had the SCT on 16 July and they let me out 16 days later. Yes, I felt rough while I was there and I had…[Read more]

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Hello Natalie

    I wish your mum well. SCT will not be easy for her. Please read the article I recommended. You will find it helpful.

    best wishes.

    Mervyn

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Dear All

    I am happy to report that I have been allowed out after 14 days after the SCT. Still very tired indeed.

    I should report to anyone interested that I stopped writing my diary because (a) I was very tired and weak (b) I didn’t think a short daily grouse was contributing anything and (c) I stumbled upon an account that seemed to me to…[Read more]

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Dear Jan

    thank you for this. I am not so sure I am doing well. Did not write yesterday because I felt so terrible and had no energy. For now day 7 the stomach cramps have gone and feel better but we will see how long it lasts.

    mervyn

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Day 5 SCT

    started the day with more energy and thought that this is getting better but by lunchtime I was back to feeling weak and rough. Tried to eat some lunch but couldn’t face it.

    maybe tomorrow.

    mervyn

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Day 4 SCT

    thanks for the advice and support. Day 4 nothing much has changed. Feel very rough and weak. Slept most of the day. Still not eating. I survive on banana scandishakes provided by the hospital. My neutrophils are still 1.8 so maybe the worst is still to come.

    mervyn

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Hi helen

    Now on day 3 and feeling rough and very weak. Don’t want to eat anything. The thing to remember is that they give you the melphalan on day 1 then the stem cells on day 2 with 18 hour drip. On day 3 they leave you alone. It is in your body so the fight can commence. The doctor says it will be like this for 4-5 days.

    Couldn’t write…[Read more]

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Day 1 SCT

    A long day if you wake up early as I do. There were the usual bloods and so on, but then you have to wait for results, the doctor to call in and the chemo from the pharmacy. We got started about 1400 hours with about an hours worth of liquid being pumped in so as to pump out quickly.

    Then we had the chemo and an hour of sucking ice…[Read more]

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    OK. Thanks for this. Will write it up daily, if I can.

    M

     

  • mervyn53 replied to the topic Stem Cell treatment in the forum Treatment 6 years, 10 months ago

    Dear All

     

    Many thanks for these words of advice. I will see how I feel when I get in there.

    Hope all goes well for you guys.

    Mervyn

  • I am 65 and due to go in for SCT on Tuesday in Cambridge. I had 3 crushed vertebrae from MM and paraproteins at 74 and was obviously immobile. After 6 months and 6 cycles of velcade I am now ready to have a line put in/on and have the SCT. I suspect it is pretty brutal since I have been told that there are those that just stay in bed and those who…[Read more]

  • mervyn53 replied to the topic After the transplant… in the forum Carers 7 years ago

    Hi

     

    Thanks for this. Very helpful.

    M

  • mervyn53 replied to the topic After the transplant… in the forum Carers 7 years ago

    Hi   Many thanks. Will bear these points in mind.

  • mervyn53 replied to the topic After the transplant… in the forum Carers 7 years ago

    Dear Adelaide

    I am heading for the transplant in July. Any tips ?

    Thanks.

    Mervyn

  • Hi

    Yes is the answer to the question in my case. I was diagnosed with MM in December 14 when before I thought all was well. At that point was immobile with 3 crushed vertebrae. They put me on chemo etc 2 weeks on 1 week off 2 jabs a week and my paraprotein have gone 74 48 18 9.  Now 1 jab a week and next clinic 31 March where they have said we…[Read more]

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