DavidSimister

  • Hi Nippy

    Your best speaking to the nurses on the Myeloma UK helpline, they are the experts in this sort of thing or your local healthcare team.

    They say that myeloma is very individual and I am sure that you can find all sorts of posts on various website with lots of people have different pps at various times. I am not an expert, the numbers can…[Read more]

  • davidainsdale replied to the topic Zometa in the forum General 5 years, 2 months ago

    Hi Lynne

    I had the same side effects usually known as ` zometa flu’ the first time I had the infusion but it quickly went away and not had any real problems with zometa since then for the next two years, having now completed treatment.

    They say that the best advice is to drink plenty before and after the infusion, other than that I always…[Read more]

  • Hi All

    I seem to have stirred up a bit of a hornet’s nest today with my posting on the Facebook page. This simply quoted something I read today in the Times newspaper about GP’s missing myeloma diagnoses.

    Tony F has made a good suggestion that may be more could be done during Myeloma Awareness Week in June. So my question is whether support…[Read more]

  • davidainsdale replied to the topic Daratmumab in the forum Treatment 5 years, 3 months ago

    Hi Ian

    Sorry to hear that you haven’t had any luck yet with treatment options, it does seem to be hit and miss, what works and what doesn’t.  This seems to be the nature of myeloma.

    I don’t have any direct experience myself of the drugs you mention, but wish you luck with your treatment.

    Have you tried the nurses on the Helpline, they are…[Read more]

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 5 years, 3 months ago

    Hi Taff

    Sorry to here that you are suffering, it sounds like a real roller coaster up one day and down the next.

    It is often difficult to know if these periods of aches and pains are due to the myeloma, the side effects of treatment, old age, normal ailments that everyone catches or in my case self inflicted from too  much DIY.

    I hope they can…[Read more]

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 5 years, 4 months ago

    Hi Taff

    Good to hear that you have finished treatment.  I think that all the travelling and hanging around for appointments is pretty tiring without having to cope with myeloma.  Hope that you now have a good long period without further treatment.

    I certainly felt tired for quite a while due to the chemo and radiotherapy but life gradually d…[Read more]

  • Hello Peter

    I am a physicist also ( wonder if there is any connection ) and have been through a similar process of thinking about levels of accuracy, calibration and limits of detection for the measurement of paraprotein levels.  It does make me wonder when results are sometimes quoted to two decimal places and patients get worried if it has…[Read more]

  • Hi Monica

    Like you, we are self funded and have low or no running costs for our monthly meetings of the West Lancs and Sefton myeloma support group. Any money we have raised has gone directly to Myeloma UK.

    If I am honest, the need for accountancy, transparency and auditing to relect good practice in dealing with charity money is a…[Read more]

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 5 years, 4 months ago

    Hi Taff

    Hope the radiotherapy goes OK for you.  I had it on my spine. Apart from all the travelling and hanging around in hospital which you have to accept as part of the job, it went well.  Ended up with a nice square shape sun tan for a few weeks on my back, but this soon faded. I seem to recall that calomine lotion held to ease the i…[Read more]

  • Hi Viv

    Sorry to hear that you may have myeloma.

    There is plenty of useful information on this website, and from the nurses on the helpline.  They say that myeloma is a very individual disease so it can often be difficult to find out how it might affect each of us as individuals.

    There are a number of patient info days around the country which…[Read more]

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 5 years, 5 months ago

    Hi Taff

    Yes it can feel like a rollcoaster at times, up one day and down the next.  Hopefully for you there will be more of the good days.
    Fatigue seems to be a common side effect of the treatment.  There is plenty of advice out there on how best to manage.  Here is a link to one of Myeloma UK’s infoguides or maybe speak to one of the nurses on…[Read more]

  • Hi David

    Sorry to hear that you are not well just now.  I had Melphalan as part of SCT but I suspect that the doses given outside of SCT are very different.

    There is some useful information on this website under the heading of ` drug finder’.  To save you looking here is the l…[Read more]

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 5 years, 5 months ago

    Hi Taff

    Good to hear that you have finished the CTD and have had a great response.  It can be a slog towards the end of cycle 6, but as they say no gain without pain!

    For me, quality of life started to improve a lot once I had finished the CTD and the side effects of the treatment start to wear off.

    Good luck and keep well.
    David

  • Hi All

    Initial feedback from patients and healthcare professionals indicates that the new support group tri-fold leaflets are being well received and are working well.

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 5 years, 6 months ago

    Hi Taff

    Sorry to hear that you are having a rough time at the moment.  This cold winter weather we having is probably not helping, but the snowdrops are coming out so spring and some warm sunshine are not too far away.

    Hope that things start to improve once this round of treatment is finished.

    I was at a talk last week given by one of our…[Read more]

  • Hi,

    Your clinical team are probably the best people to advice but in the meantime why not have a word with one of the nurses on the Myeloma UK Helpline.  They are really friendly and very knowledgeable.  There may also be something in booklet form which may be of interest.
    Hope this helps.

     

    David

  • davidainsdale replied to the topic Results! in the forum Newcomers 5 years, 6 months ago

    Hi, I am now 4 years post diagnosis and doing well after a fairly difficult start.

    There is plenty of advice available from Myeloma UK and I found that the Infoguides were a real help. I would also recommend attending one of the patient infodays or going to a support group meeting if these are going on in your area.

    The nurses on the Infoline…[Read more]

  • davidainsdale replied to the topic Zometa in the forum Treatment 5 years, 6 months ago

    Hi Ian

    Zometa appears to quite common as part of initial myeloma treatment. I had it for two years after which my consultant said that there was no evidence that staying on it for long had any beneficial effects.

    That said, this practice does seem to vary around the country from hospital to hospital from what I have seen and heard.  Maybe it is…[Read more]

  • Hi Sue

    Stem Cell Treatment like you in 2014 and fortunate that my quality of life is much improved.

    I don’t know if I can offer much help or advice except to say that the vast range of medication we have during treatment ( I was on 40 tablets a day at one stage ) is bound to have some side effects.

    I have found that skin irritation and muscle…[Read more]

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 5 years, 7 months ago

    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…[Read more]

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