I was diagnosed 2 weeks ago

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Hi, I was diagnosed 2weeks ago with CML after going to A&E with back pain .. I’m feeling very lonely even though I’ve got everyone with me . I’ve had my bone marrow taken and a weeks worth of Chemo.. now on imatnib and it’s doing a great job but my platelets are really high .. did anyone else have this when they started treatment ? Really glad I’ve found this group so I can read about others journeys .. thanks so much x 

  • Hi  and welcome to this corner of the Community. I am Mike  and I help out around our blood cancer groups. I was diagnosed way back in 1999 with a rare type of NHL, so rather different from CML but still a blood cancers with lots of twists and turns.

    What Chemo are you having?

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike , thank you for your reply .. I was on hydrooxycarbamide for a week , they’ve now changed me to Imatinib because my white blood cells reduced dramatically. 
    Really appreciate your reply .. Beth

  • Hi Beth, the differences across blood cancer treatments is rather starting especially when all these cancers fall in the say area-ish. There are actually over 60 types and subtypes of Lymphoma alone.

    You could put Imatinib into the search tool near the top and look at old post then hit reply and see if the member picks up on your post.

    It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

    Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

    To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for sending me the link. 

    My husband was diagnosed with CMML the beginning of June and its been a rough journey so far for us....especially for him. He's started on Chemo in July. He's being treated with Azacitidine and injection given in his tummy for 5 days then 2 days off then another 2 days then 19 days break before the next course starts. . Up to now there is no change ..but they said that's not unusual at this stage.  He has to complete 4 courses before they can see results. ..he's not been well through the last 3 courses. He has now been in hospital for over 2 weeks with a fungal infection on his lungs...which they're struggling to find medication to treat it. His 4 th lot of treatment should have started today but delayed due to infection . He is having blood and platelet transfusions every couple of days. 

  • It seems a relentless journey for him with no respite. We hoped we could enjoy the good days in between but this last couple of months he's been poorly most of the time. Its all very stressful. 

  • Hi flowers.. I was just wondering how you are now and are you feeling now? My husband was diagnosed with CMML beginning of June and its been a very stressful journey for him. 

  • Hi @Bee62 and good to see you found your way across.

    I help out around our various blood cancer groups. don’t have CMML but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

    I do hope you find the group helpful and as always I tend to be around to help out as best as I can ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you Mike. What a long journey you've had, but thank goodness they can manage it for you . 

  • We all do what we need to do to get through Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Flower48, I have just been diagnosed with high platelet CML. Hope you are doing well and be interested to hear about your story.