• September 11, 2008 /  3 Comments

    I have decided to keep a blog, because though I didn’t want to make a ‘misery memoir’ of my illness in the first few months, updating people on my progress has become quite time-consuming, even using cut and paste! If I have time I may add in bits and pieces of interest on other issues: books, links, thoughts etc. Currently I have only just started to get to grips with blogging, so it looks a mess and is disorganised. Hopefully as I get to grips with the package the site will improve, but please bear with me!

    My name is Sarah, I’m 54 with a husband Bob and two children, Tom (21) and Rosie (18). I am a teacher, an active trades unionist and involved in left wing politics. I am currently President of the local NUT branch and Secretary of Trades Council. Although I can’t attend meetings any more, I’m trying to work by email as a general information ‘hub’ and I still try to do work associated with my political beliefs.

    This section of my blog is just to inform people about myeloma, and for interest to anyone who wants to compare their experiences with mine. I’m not planning on a regular diary as there’s nothing more boring than lists of symptoms/side effects day by day, so I’ll pop in the odd update as necessary. Please, if you suffer from myeloma – remember you may/will be treated with a different regime because that’s more appropriate to you or because time has gone past and treatments, procedures and drugs change. Also your symptoms may be more or less severe or different from mine! So always consult with your own team about your treatment.

3 Comments to Why a blog?

  • My dearly beloved has just (last Sep) started on Revlimid, having had Velcade 18 months before, so a more usual pathway. It’s good to read of other peoples experiences, and you write well.

  • Hi Caroline! Thanks for your comment! Revlimid seems to be a pretty effective drug. I felt that the steroids were more problematic for me – they always have been. I did take a few cycles to get accustomed to Revlimid, but I found I could tolerate it pretty well, so I hope your husband is managing OK too. I did get shingles – my consultant said at the time that she would consider putting people on it as a preventative in future, so something your husband might ask about as I wouldn’t wish it on anyone. The other good thing about Revlimid is that it’s a pill, so no traipsing to the hospital every week. I am interested in this new subcutaneous delivery of Velcade which seems to help with PN. I am concerned about that, especially as I have PN already and am rather running out of medical options if Velcade proves to be unsuitable. Was your husband doing it as IV and also was he doing once or twice a week? Any tips about what to expect? Anyway, hope all continues OK with his treatment. Take care, Sarah

  • Sara
    I have been treated for myeloma for the last 11 years. I have been through two transplants (at Leicester) and Velcade. The first transplant gave me 6 years remission and the second nearly 3 years. The Velcade did not work and only kept the myeloma under control during the 6 sessions.
    I have now had 3 months of revlimid and my paraprotine level has reduced fron 32 to 2.1 so my consultant is very happy with the response. I am currently having 2 weeks free from treatment because my neutrafils are too low. Having read your blog I notice that you are suffering from the same side effects as I am. Stomach, mouth, tiredness etc. This helps me a lot as at least I know it is the treatment and not the myeloma causing them.
    How long have you been on revlimid in total. This would help me to know what to expect. I know everybody is different but it will give me an idea.
    If you want to contact me I am willing to let you know how my treatment goes. I hope you keep as well as is possible with this treatment.

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