Paula Costin

  • Tell her not to panic. I have had 2 cycles of VTD, 3 of CTD and  DT PACE. I lost my hair after the DT PACE at the end of January. It’s growing again and is now about 1.5 cm long. I am to have stem cell harvesting (as Mick says above) on Monday followed by a stem cell transplant in May so my hair will come out again after they give me the high…[Read more]

  • paulapurple replied to the topic Bewildered in the forum Newcomers 4 years, 1 month ago

    Glad I could be of help. Good luck my love.

    Paula

  • paulapurple replied to the topic Bewildered in the forum Newcomers 4 years, 1 month ago

    They are right, Myeloma is rarely staged as it manifests differently in all of us. There is an international staging system but doctors don’t often use it. http://www.cancerresearchuk.org/about-cancer/myeloma/stages

    I’m no expert but I don’t think her paraprotein level would be that high, it sounds to me that she may have Light Chain Myeloma.  I…[Read more]

  • paulapurple replied to the topic Hereditary in the forum Newcomers 4 years, 2 months ago

    The hereditary component is very slight I believe. The Myeloma Introductory booklet states:

    ..people who have a close relative (parent, sibling, child) with myeloma are up to twice as likely to get myeloma than the general population

    The Myeloma Info pack states:

    There is a slight tendency for myeloma to occur in families. Although rare, this…[Read more]

  • paulapurple replied to the topic Daratumumab in the forum Newcomers 4 years, 2 months ago

    I’ve signed the petition Gerry and shared it on the UK Myeloma Support group Facebook page.

    Paula

  • paulapurple replied to the topic Daratumumab in the forum Newcomers 4 years, 2 months ago

    Thanks Gerry.

  • paulapurple replied to the topic Daratumumab in the forum Newcomers 4 years, 2 months ago

    It does seem really tough doesn’t it. I have had three chemo treatments, all of which have failed to reduce my light chains significantly. Daratumumab is an option for me, but like you I could so easily have missed it. The only reason I didn’t start on another option is they were not sure what to try and have done some cytogenetics to inform…[Read more]

  • Perhaps ringing the Myeloma UK Information line would help.

    Paula

  • I can’t help you on this one I am afraid but you will reach more people who have loads of information and experience to share if you join the UK Myeloma Support Group Facebook page; it’s where I turn if I need information and support. It’s open to both people with Myeloma and their carers.

    Good luck

    Paula

  • I would ring the Myeloma UK help line. Myeloma is a very individual cancer and we are all affected differently.

    Read the newly diagnosed booklet (link below) as this will help you understand more about the condition. Myeloma isn’t curable but it is…[Read more]

  • I didn’t get on well with my father either so I have some idea what you are going through. I would read your way around the great info on the Myeloma UK web site. The consultant may have started him on Initial treatment (read the info sheet on this). It depends what type of Myeloms he has as it’s so individual. I have light chain Myeloma so how…[Read more]

  • I agree, it is bad not to have someone go through them with you. Do you have a consultant appointment soon? If not I would ring and ask for one.

    Now I’m not exactly sure but I think that the 4% relates to abnormal plasma cells in your bone marrow, if so then this is quite low. I had 11%/12% when I was diagnosed. I think anything over 10% means…[Read more]

  • I had radiotherapy as, along with the Myeloma I also had Non Hodgkin’s Lymphoma which manifested as a tumour behind my right eye. You can’t feel the radiotherapy as it’s being done but you will hear a lot of noise from the machine. I had bursts in three different places so it moved around me and makes a noise when it moves. It’s not like an MRI…[Read more]

  • I had PN too with Velcade. VTD didn’t work for me so I only had three cycles but the PN has stayed with me. Rcently I have had DT PACE with large doses of Thalidomide, which has increased the PN. I mainly get it in my hands and feet. I find that being on my feet helps, rather than sitting. My hands bother me more as even typing can be difficult…[Read more]

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

    I personally don’t take it but I know some people do. It can be difficult to establish whether it’s the drugs that are working or the cannabis oil. Post a question on the Myeloma UK facebook page and there will be people that will give you links. Talk to the team as they may have views on it. I guess it’s a personal decision but whilst on…[Read more]

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

    If he’s having back pain he will probably have an MRI, CT etc to see what’s happening in that area to inform the treatment plan, if he hasn’t had that already. Ask questions as Myeloma can affect the bones, especially the spine.

    If he’s having Thalidomide, a steroid (dexamethesone) and an injection this is most likely Velcade. This treatment is…[Read more]

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

    My heart goes out to both him and you; he’s so young! This is supposed to hit people over retirement age, I was told I was young at 57, but it seems to be getting younger and younger.

    I was diagnosed in January 2017 with Non Hodgkin’s Lymphoma, which was fortunately isolated to one tumor behind my right eye. A month later I was diagnosed with…[Read more]

  • Latest blog post. For previous see mymyeloma.wordpress.com
    Last week I saw my consultant and he confirmed that the current treatment I was on (CTD for those that know what this means) like VTD hadn’t succeeded in reducing my light chains so we are no further forward. The next step is to be DT PACE, a fairly aggressive regime for those of us that a…[Read more]

  • <p class=”MsoNormal”><b>Latest blog post. For previous see mymyeloma.wordpress.com</b></p>
    <p class=”MsoNormal”></p>
    <p class=”MsoNormal”>Last week I saw my consultant and he confirmed that the current treatment I was on (CTD for those that know what this means) like VTD hadn’t succeeded in reducing my light chains so we are no further forward. T…[Read more]

  • paulapurple replied to the topic Hair Thinning in the forum Newcomers 4 years, 5 months ago

    DT-PACE is a treatment combination used to treat myeloma patients who have received several previous treatments or who are refractory to treatment. DT-PACE is a combination of six drugs: Dexamethasone, Thalidomide, and four   Chemo drugs:  Cisplatin, Adriamycin® (doxorubicin), Cyclophosphamide and Etoposide.

    Its given continuously over a 4-d…[Read more]

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