DaiCrowther

  • I always have a short or disturbed night's sleep before a consult and felt very tired when I attended this morning. I had my bloods taken and then waited to be seen and when we were ushered in my consultant was looking at my bloods results sheet with a frown. My bloods were okay apart from my neutrofils which were lagging on 0.88… meaning I…[Read more]

  • Many of the regulars who have been on this board for over 6 months or so will have heard me banging on about the efficacy of Kyprolis (which started life off as Carfilzomib). I missed out on the original trial in January of last year by one week… I passed every qualification except for the presence of myeloma in my urine… they closed the…[Read more]

  • Hi Eve,

    I am so sorry that Slim has relapsed so soon, I was hoping and wishing for at least a couple of years for the both of you… but there you go and Velcade will most probably be next. It is an effective treatment and much easier now that it is delivered subcut… no more cannulas.

    Did Slim get enough cells for a 2nd SCT? I know that…[Read more]

  • Hi Jackie,

    There are quite a few people who still visit this board regularly who I am sure will be able to offer advice based on their experience of grief and loss… but it is the weekend and they may not be around for a day or two.

    In the meantime all I can offer is sympathy (rather than the empathy that you need).

    I can understand…[Read more]

  • DaiCro replied to the topic Everybody has a story… in the forum General 11 years, 1 month ago

    Thanks to all for reading and commenting… your comments are much appreciated. Looking back I can see that I did indeed have a rough ride during that first year but while the lack of treatment and care was terrible it was the amount of bone damage that occurred during the last 6 months of that period that has caused so many problems for future…[Read more]

  • Forgive me Peter, I am not trying to be glib or make light of your points which I fully take on board but if I have to take paracetamol for ten years I will be the happiest man alive. 😎

    As a matter of fact, right now, I'd settle for 2 years.;-)

    Dai.

  • DaiCro replied to the topic We have dates in the forum Treatment 11 years, 2 months ago

    Hi Jacquie,

    That's dates and a plan… and a comprehensive plan at that. 😀

    I can only wish Geoff the best of good fortune at every stage of the plan and hope that your nerves hold out, especially as the SCT grows nearer.:-/ 😀

    Remember that we are here to help explain and share experiences of each of the processes and…[Read more]

  • and this is mine – told here before many moons ago but updated for the new generation.

    I moved from Pembrokeshire, South West Wales, to Nottingham in May 2009 after some poor medical care and a year of non-treatment for Secondary Bone Cancer, Primary unknown, culminating in my consultant writing up in my notes (in front of me and Janet and a…[Read more]

  • Hi Gill,

    I remember we carried out this exercise just after we moved to this new board from the old one and it was very useful and broke the ice for a lot of people. So:

    My name is Thomas David Crowther but I am known as Dai (Welsh diminutive of David, equivalent of Davy – not Dave). 🙂

    I am 59 years old (Xmas Eve baby) and look…[Read more]

  • Hi Peter,

    Thanks for that, I would have found it interesting as an article anyway but more so now that I started on Zometa last month after four years of Bonefos (apparently I slipped through the net). I will have my Zometa with my 2nd infusion of Bendamustine for as long as the treatment lasts and then as a stand alone after that.…[Read more]

  • Hi Ali,

    I agree with Eve, ring MUK and speak to Ellen or one of her colleagues regarding the complete rundown of the test. I have done about 10 of these tests, including one early on where, like you, I flooded my body with liquids and filled the bottle before midnight… actually it was before 7:30pm (I was listening to 'The Archers' 7pm to…[Read more]

  • DaiCro replied to the topic Struggling to cope in the forum General 11 years, 2 months ago

    Hi Tanya,

    I appreciate your stand in not taking your children to see your Dad… and I also feel sorry for Ron for having to deal with the demons brought on by alcohol on top of the problems presented by MM. But I am also quite sure that he knows what effect his behaviour has towards those that are only looking to help him. It becomes a…[Read more]

  • Hi Sandie,

    I have followed your thread throughout but these good people seem to have everything well covered… excepting one thing which I think has slipped through the net (forgive me if it has not and I am repeating advice already given). :-/

    Liquids intake – 3 litres a day minimum… your Mum definitely needs this. MM sufferers are…[Read more]

  • DaiCro replied to the topic MM and immune system in the forum General 11 years, 2 months ago

    Hi David,

    The radiotherapy in 18 months or so is not such a long shot as it first seems.

    Say you get 12 to 18 months from the Velcade (it's usually a pre-cursor to a 2nd SCT but gives you a fair remission on its own merits) by that time, as you get ready for the next step to Revlimid (and Dex of course) the newly licensed drug therapies from…[Read more]

  • DaiCro replied to the topic Tenterhooks in the forum General 11 years, 2 months ago

    Hi Maureen,

    The trouble is I have no idea when my neutropenia has lifted. I finished my 2nd infusion of Bendamustine a week last Tuesday and then I was sent home for the best part of 3 weeks to allow the chemo to do its job and then for my bloods to recover. 😎

    So Janet will have the Grandchildren at their home tomorrow which we know will…[Read more]

  • Take it was… but take it all the same, at a much reduced rate and avoiding all but the closest of family for the first 6 to 8 weeks or so until your bloods get to normal or better.:-)

    Take this time just to look at each other, chill out and get addicted to daytime TV… so when fitness allows you can rummage around the car-boot sales as…[Read more]

  • I am sure that there are still a few of us who moved onto this MUK site from the old one. One of the first series of posts that got my interest was the running 'Blog' of Stephen's SCT by his wife Gill Seaward. It was informative, easy to understand and was also a very human approach to a serious situation… I saved all the posts and printed…[Read more]

  • DaiCro replied to the topic Franks SCT take 2 in the forum Treatment 11 years, 2 months ago

    Agreeing to undertake a Stem Cell Transplant is a one-way ticket to the future. After the Melphan and the return of the Stem Cells you really have entered a nonnegotiable contract with your body. With any other course of treatment you can say 'Enough, I want out of this'… but with a transplant you have no other option but to see it through to…[Read more]

  • DaiCro started the topic Tenterhooks. in the forum General 11 years, 2 months ago

    Janet had our Grandchildren all day on Tuesday due to a broken boiler at their school. Edith (nearly 5) had the sniffles and a cough and now so does Janet… and here I am neutropenic but finding it hard to avoid Janet. 🙁

    She had them again this afternoon (both times at their house) and Alfie (nearly 7) got quite upset that he couldn't see…[Read more]

  • DaiCro replied to the topic Franks SCT take 2 in the forum Treatment 11 years, 2 months ago

    Like Helen I did not want to see anyone (except Janet) during my SCT enforced stay… well I got my wish and it included Janet, who was there for the SC return (all 14 bags) but then came down with a nasty cold and recovered just in time to take me home. I was alone but not lonely as I invented my SCT Olympic games and kept in touch with all my…[Read more]

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