KevinLavender

  • KevinL started the topic Getting on with it in the forum General 7 years, 9 months ago

    Hi all

    I was diagnosed with MM in July 2012 and have since had one relapse in 2015. It was then I realised I wasn’t making the most of the times I was well so I’ve undertaken to do things I want to do – within the boundaries of my illness.

    I have bought an electric mountain bike and started a tour of our country, hoping to visit places I’ve…[Read more]

  • Hi Jean

    For reasons I never understood they weren't able to use my Paraprotein levels to measure the MM and always worked on the light chains. I know this was unusual. Sorry can't be more help.

    Don't be afraid to ask them the direct question about whether the levels need to be zero before SCT – sometimes they won't say unless you ask…[Read more]

  • Having been diagnosed in July I have just completed three shortened cycles of CTD. My light chains and bone marrow biopsy show a return to normal and I'm booked in for stem cell harvesting on 29th October.

    I wanted to share this good news with anyone who is going through the CTD and suffering from the rather random side effects – it is worth…[Read more]

  • Nicola

    I found the DEX (steriods) to be the worst of the CTD treatment. Like your Dad it seemed to be when I stopped taking them I had the most trouble. I have just finished the CTD cycles and it took a week to to start to feel normal again. Depression and anxiety were horrid side effects but they did pass after a short while.

    Hope your…[Read more]

  • KevinL replied to the topic Where, what etc'. in the forum General 11 years, 8 months ago

    Yes I lost my post yesterday – see if this gets through!

  • Scott

    Yes the treatment started within two weeks of the diagnosis.

    Kevin

  • I was having an MRI scan for a digestive problem when a very alert analyist spotted some vertebrae appeared damaged.

    This lead to an immediate referral to a consultant who having seen the blood tests warned me it appeared to be MM. There then followed a fully body scan, MRI scan of spine, and bone biopsy. These combined with the blood tests…[Read more]

  • Thanks Michele

    You're right there are other good news posts I just thought the link here gave a bit more detail and was very uplifting.

    Looking forward to feeling so good again though!

    Thanks for the reply –

    Kevin
    Sussex

  • Wendy

    I found your post and link very uplifting and encouraging. I've found it hard to find anything about how I can expect to feel when I get through the CTD and Stem Cell Transplant.

    Thanks

    Kevin

  • KevinL replied to the topic Very Stressful in the forum General 11 years, 8 months ago

    The waiting for the results was an awful time as we obviously didn't want to tell the rest of the family until we knew what the news was.

    Try not to get too far ahead of yourself thinking about what maybe, concentrate on today and get on with that. The sleeping is a problem as I found my mind tended to race away in the early hours.

    Keep as…[Read more]

  • KevinL replied to the topic Employer support? in the forum General 11 years, 8 months ago

    My employer has been very supportive. I have been on CTD treatment for a few months and reacted badly to the Dex (steriods) preventing me attending work for over a month. My employer has said if I feel I'd be better at work come in, otherwise stay at home.

    I guess it depends very much on the individual employer and perhaps the size of the…[Read more]

  • KevinL replied to the topic Diagnosed this week in the forum Newcomers 11 years, 8 months ago

    Hi Andrea

    Sorry to hear your news. I too was diagnosed about the same time as you and have started the cycles of initial treatment. I am 48. As you say the whole thing is such a shock and does make you very anxious about the treatment and the future.

    You will read on this forum lots of stories about people who have been through the…[Read more]