Dusk

  • Good Andy to hear that the progress to recovery has been so positive. My memory of having pneumonia last year still remains so I know how tough it can be, even without being in ICU.

    Do you know what might have triggered it for you? In my case lung infections are easily triggered by the drug regimes affecting cell counts and being in contact with…[Read more]

  • Dear Laura and Jacquie I too am sorry for your loss.

    Karen, The Myeloma Beacon US site may be worth looking as the US has a very higher numbers with myeloma and there is a lot more debate by patients on it regarding whether to have an SCT.

    When one has co-morbidities (and I am one who has) the risks are higher. Your doctor has advised you of…[Read more]

  • There are private parts to the NHS system. The elite with resources, those who have medical insurance e.g. from the workplace or from their own funding who have myeloma will still have access to the drugs NHS patients will be denied.

    From the drug companies perspective the UK alone does not have enough myeloma patients for them to generate huge…[Read more]

  • Jeffrey and Alex,

    We and all patients denied treatments that are available have every right to be upset, angry, depressed according to their psychological makeup. I too have written to my Labour MP, a young inexperienced thing who took over from a well known high profile self promoting one. The latter wanted my vote but failed to do anything when…[Read more]

  • Hello Helen

    When you are first diagnosed then the BMB serves a number of functions including taking a sample for cytogenetic testing as well as assessing the percentage of abnormal plasma cells in the bone marrow. It is a snapshot of the area where the sample was taken.

    The myeloma is not always evenly distributed throughout the skeletal…[Read more]

  • Hello Helen

    When you are first diagnosed then the BMB serves a number of functions including taking a sample for cytogenetic testing as well as assessing the percentage of abnormal plasma cells in the bone marrow. It is a snapshot of the area where the sample was taken.

    The myeloma is not always evenly distributed throughout the skeletal…[Read more]

  • I agree with Jeffery that political slurs are unhelpful, reminds me of the debates in parliament!

    I think M UK is correct in that the CDF is an anomaly. What is needed is a NHS policy at central level regarding funding for medical treatments which are ongoing and cost a lot of money.

    One of the areas which really has been left unsatisfactory is…[Read more]

  • I agree with Jeffery that political slurs are unhelpful, reminds me of the debates in parliament!

    I think M UK is correct in that the CDF is an anomaly. What is needed is a NHS policy at central level regarding funding for medical treatments which are ongoing and cost a lot of money.

    One of the areas which really has been left unsatisfactory is…[Read more]

  • The UK is getting to be a small market for newer myeloma drugs e.g. compared to USA where myeloma patients are not only in higher numbers, but the insurance, for those who can afford it, gives their treating clinicians more opportunity to make a case for their patients individual treatment more readily.

    The NHS is being told to make savings and…[Read more]

  • Andy, sorry to hear you have what we with MM fear. I had it last year and I had a long hospital stay, thank to medical ‘failures’.

    Did you have the pneumonia vaccine?

    At my treating hospital we are told to report / go to A&E if temperature rises above 38. So it seems one needs to monitor at frequent intervals if suddenly feeling unwell /…[Read more]

  • Dear Charlie, I do not know what you have decided regarding SCT. But the research suggests younger people like you who have suitable induction followed by SCT survive longer. Very few choose not to have an SCT unless their health status suggests a higher risk than normal.

    In general, it is known that remissions are longer after an SCT, but not…[Read more]

  • Hello Andy

    22 cycles of RCD!!! Your bone marrow would have got quite a battering. Interesting they kept the cyclophosphamide in a triplet combination for so long a period, but as they say each of us is individual and the treatments given will be based on our doctor’s experiences of treating our disease. No wonder POM is easy for you after all…[Read more]

  • dusk replied to the topic Colin in the forum General 6 years, 9 months ago

    Wishing you and the family have good support at this sad time.

    Dusk

  • Hello Rebecca

    A good post, showing depth of understanding of life choices so we live life and not look back or forwards with regret. we make a decision to have a treatment and then need to accept the outcome without regret.

    The issue, as someone who was from the start accepting of the diagnosis, but wanting detailed involvement in decisions…[Read more]

  • Fiona:  I noted from your other positing the decisions about ‘life’ your husband has made with your permission.  Although MM might force a role reversal, being a house husband with more time to enjoy the moment I think is great.

    My life / body has been changing since MM and as a result I am now on second line treatment. Neutrophils have got v…[Read more]

  • Some forum members have mentioned having ongoing low neutrophil counts whilst on drug treatment outside of the hospital setting e.g. with revlimid, raising the spectre of infections arising between testing of blood for cell counts.

    Are there ways members are managing this to prevent the possibility of severe neutropenia and the risk of serious…[Read more]

  • Hi Folks

    Just to give you a perspective, things like dried fruits have a lot of concentrated sugar, more than fresh fruits. Any high starch /carbohydrate containing foods (e.g. bread / rice), not just the sweet things we consider with added sugar, are reduced down into sugars in the body. Only if you eat a high protein / fat diet with say steamed…[Read more]

  • dusk replied to the topic Interesting article …. in the forum General 6 years, 11 months ago

    Rebecca,

    Interesting post.

    The personal perspective of each one of us will be based on our mental and emotional ability to cope with change. Corporations etc. find change difficult because the ability to take a whole group of ‘diverse and agenda seeking’ others’ to ‘another place’ to function better is very hard unless leadership is very very…[Read more]

  • dusk replied to the topic Bone pain in the forum Related conditions 6 years, 11 months ago

    Hi Carol,

    Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT  do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable…[Read more]

  • dusk replied to the topic Bone pain in the forum Related conditions 6 years, 11 months ago

    Hi Carol,

    Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT  do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable…[Read more]

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