DavidSimister

  • Hi Jan

    My suggestion is to speak to your consultant and the nurses on the Myeloma UK helpline to explain the figures. There are probably other factors to take into account such as overall fitness and other blood counts when trying to interpret the pp levels.

    Hope this helps and that your husband is keeping well.

    David

  • Hi All,

    Perhaps we should ask Myeloma UK to do some badges for us to wear at 5, 10 15, 20 years post diagnosis – bronze, silver, gold, platinum !

    David

  • davidainsdale replied to the topic London Marathon in the forum General 3 years, 7 months ago

    Hi Maggie

    Thanks for this helpful feedback. Why just the London marathon? I am sure that this would also apply to other events and would provide useful publicity for fundraisers during the year.

    Hope this helps.

    David

  • davidainsdale replied to the topic London Marathon in the forum General 3 years, 7 months ago

    Hi All

    I have to say that I share some of hartsdown views at the top of this post.

    I wanted to toss in a tenner to help runners on the London Marathon and spent ages searching for a runner who was raising funds for Myeloma UK. It doesn’t help that there are lots of different online charity donation platforms. I did eventually find the team of 27…[Read more]

  • Hi Jenny/Linda

    My journey began in 2013 when I was 59. I was in a pretty bad state with spinal compression and could hardly move for 6 months due to back problems. 18 months of treatment followed with radiotherapy, CTD and stem cell transplant. My quality of life is much improved and pps have only just started to rise slowly again, so that’s six…[Read more]

  • Hi Linda

    That’s great news and inspiration to us all. Thanks for posting this. Looking forward to seeing something similar in 10 years time !

    Good Luck

    David

  • Hi Robert

    Good luck with your recovery, expect to feel tired for a months.

    Fantastic to see that your youngest is running the marathon today, is there a weblink for donations?
    David

  • Hi

    I had my stem cell transplant over 4 years ago, and yes , all my hair fell out but it did grow back quite quickly and for me was not a problem. I think it is probably different for women rather than men about how they feel.

    I suggest that your sister has a chat with your local Macmillan centre. They deal with all types of cancer and regularly…[Read more]

  • davidainsdale replied to the topic Daratumumab in the forum Newcomers 3 years, 8 months ago

    Hi Ian and All

    Just a comment along the lines that the Policy and Public Affairs work which Myeloma UK do to influence the organisations such as NICE and NHS is really important.

    It’s great that new drugs are coming along but no good if patients can’t access them – remember the original campaign by Eric Lowe ago to get patient access to…[Read more]

  • Hi Alex

    I am also a patient. Diagnosed 5 years ago and had my SCT 4 years ago.

    Sounds like you need to speak to a haematology specialist, have you thought of asking for a second opinion? This should not cause offence. You may also like to enquire about the extent of any genetic profiling that has been done. This may help to add to the available…[Read more]

  • davidainsdale replied to the topic Skin problems post SCT in the forum Side-effects 4 years ago

    Hi Sue

    Just seen your post about itchy skin problems.

    I think my skin is certainly more sensitive and/or itchy since having myeloma treatment. It always seemed to be linked to Zometa infusion but might have been the SCT or other chemo. It seems to come and go every few weeks and is more of a nuisance than anything so it is hard to complain – I…[Read more]

  • davidainsdale replied to the topic Confidence in the forum General 4 years ago

    Hi Paula

    I was great seeing your blog, very interesting and thoughtful. Another way to reach out to all of those affected by myeloma.

    Good to see that you enjoyed the Birmingham Infoday -MUK held their North West Infoday in Liverpool this year and it was a great success.

    Wishing you well.

    David S

  • davidainsdale replied to the topic Just Diagnosed in the forum Newcomers 4 years, 1 month ago

    Hi Taff

    Sorry to hear that you are having problems at the moment. Sounds like you are having a bit of a rough time of it.

    Hope they can sort you out soon and quickly get you back on the road to recovery.

    All the best

    David S

  • davidainsdale replied to the topic HELP! in the forum Newcomers 4 years, 1 month ago

    Hi Bob

    Sorry to hear that you have been diagnosed with myeloma and are having bone problems which seems to be quite a common complication with myeloma.

    I would certainly recommend speaking to one of the nurses on the Helpline. They are very knowledgeable and friendly and it is their job to help patients and carers affected by myeloma.  I would…[Read more]

  • I thought it might be a nice idea to record here our thanks to Sara for all her hard work in organising the support group leader weekend in Manchester last weekend. It was really worthwhile with plenty to talk about.

    We didn’t have the opportunity to review and discuss this Forum which Myeloma UK have set up for the benefit of support group…[Read more]

  • Hi

    Glad to hear that things are starting to improve.

    There may be other people you can ask for help beyond the medical team at the hospital. Your local Macmillan Centre may be able to offer assistance and there are plenty of Myeloma patient support groups around the country , so hopefully one will be nearby, or there are the Patient Infoday…[Read more]

  • Hi

    Sorry to hear that your husband has myeloma and is finding the treatment difficult to cope with. It must be very hard on you both.

    They say that myeloma is very individual and everyone is different. I didn’t have too many problems myself with the various types of treatment ( CTD) but there is no harm in asking for a second opinion – I don’t…[Read more]

  • Hi Brian

    Presume that you have investigated the costs of going privately. I may be wrong, but I seem to recall seeing somewhere that the cost of Revlimid was £64 per tablet.

    Hope this helps.

    David

  • Hi Taff

    Sorry to hear that you have had a rough time of it recently.

    I had radiotherapy on my back 4 years ago, no real problems with it I have to say except for the short term suntan and the ever present fatigue. It seemed to do the job of dealing with the plasmacytoma in my spine and the accompanying back pain.

    Hope you have a speedy…[Read more]

  • Hi Beth

    Sorry to hear about your father’s diagnosis of myeloma. Hope you are coping.

    There’s lots of information availbable from Myeloma UK.  I would also suggest speaking to one of the nurses on the helpline if you have any questions, or attend one of the Infodays or make contact with a local myeloma support group.

    I agree with everything…[Read more]

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