I'm new to the site! My story!

In 2005, I was very active running a dance club with my husband and friends, and also very worried about my Mum's health, when I discovered a pea-sized lump on my shoulder. I had been feeling tired but thought nothing of it. I would even slide down the stairs on my bottom rather than walk. After a week when it did not disappear I went to the doctors who after examination, told me it looked like cancer. So after a bone marrow biopsy, I was told I had CLL and would have to watch and wait. ( I was 47 years old). My lymph glands swelled considerably and in 2006, I had chlorambucil which was effective.

In 2009, my lymph glands swelled again and I was told I would need to have FCR treatment (Fludaribine, cyclophosamide and Rituximab). On being sent home, the hospital omitted the anti sickness drudges, and because I was feeling quite woozy I did not notice and quite happily swallowed the medication with the result I was sick as a dog, with the result that I cannot tolerate strong drugs. I ended up having to have the medicine intravenously given.

Then in 2011, I was given Fludaribine which is a maintenance drug which finished Dec 2011. Fortunately, I have been lump free since. However, in April 2012, I noticed a small lump near my throat, had a thyroidectomy and am now on thyroid tablets (I have thyroid cancer as well!).

My haematologist is a lovely lady who keeps a very close eye on me and she understands me very well. I have had no side effects from any of the drugs I've taken and I believe the FCR side effects were due to me not being given the anti sickness drugs. Yes, I do get tired and will often fall asleep in front of the TV. However, I still lead a very active and normal life and my church has been a wonderful support to me. My husband is very understanding and supportive. My general health is very good and I haven't even had a sore throat or cold for a couple of years.

I do not know what the future holds but will cross that bridge when I come to it. I do wonder however, if I have had CLL for much longer than when it was diagnosed. I can remember in 2002 on my wedding day when a ginormous bruise appeared on my arm and I had to put make up on it to camouflage it. I noticed also that cuts would become easily infected. Has anyone else thought the same?

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  • Hi Marisa, thanks for sharing your story with us and you've certainly had a rough time particularly with having thyroid cancer too. It does sound as if you're very resilient and have great support which is such a bonus.

    I was only diagnosed with CLL 6 months ago and am presently on W & W Stage A. I have no idea how long I had this before diagnosis but like many people, it's possible I'd had it a while. The huge unexplained bruising you experienced before diagnosis suggests you may have been having platelet problems but it's obviously impossible to say at this stage.

    Very remiss of the medics to omit anti-emetics from your FCR regime, that must have been awful for you!

    It's good to hear that you have a haemotologist you trust now and I wish you well with your future progress. You seem to have adopted a healthy philosophy to your condition and that positivity is great to see. Most of us empathise with the 'falling asleep in front of the tv' syndrome! Lol

    Best wishes,

    Newdawn

  • Hi Marisa,

    I too want to thank you for telling us your story. it is encouraging to hear how the treatment has worked for you (in spite of some blips along the way). It's great to know that you still live a very active life.

    About the bruising, I also bruise very easily. I even had a colleague at work question me as to whether my husband was hitting me! (I had a nasty bruise on my arm). She said it partly as a joke, but it made me wonder if other people had been thinking the same!! It may not have been the CLL though, as my platelets were (and still are) at reasonable levels.

    blessings on you,

    Paula

  • Thanks Paula. I still bruise very easily. Sometimes I can't remember bumping into something. However, I do know that if you have lots of bruises suddenly appearing, then you need to see a doctor pronto.

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