I recently got diagnosed with chronic myeloid leukemia and started treatment a week ago and I’m getting weekly blood work done. My 1st blood work came back with my platelets even higher (1712) than they were to begin with went up 366 points more. I’d like to hear others experiences.
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Hi @jen1204 I am so glad that you have found us so soon after diagnosis.
I was also diagnosed at this time of year and felt in a weird bubble with the world celebrating around me.
I have Chronic lymphocytic leukaemia (CLL)
i hope others with Chronic myeloid leukaemia will share their experiences for you.
What helps me is to write down all my symptoms, fears, questions and practicalities so I keep my specialist nurse, if you have one, or medical team aware.
I attach the Blood Cancer UK on Chronic myeloid leukaemia
Chronic myeloid leukaemia (CML) | Blood Cancer UK
Please do keep posting, the Blood Cancer UK support line is also there for you on 0808 2080 888.
Be ever so kind to yourself and we are about over the holiday period so please do keep posting
wow yes that’s exactly how I feel I thought I was just being selfish. But yes I feel in a weird bubble as well that’s a great way of describing it.
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Hi jen1204 i was diagnosed in August with Chronic myeloid leukaemia was on and off meds for a few weeks because my counts got to low. Have been on imatimib now for 3 months things have slowly settled down for me and consultant happy with my progress. Few aches and pains on the way as in side effects but nothing else. Quite tough at first coming to terms with everything but that has improved with time. I know i still have a way to go but my energy levels are now much better than they were a couple of months ago. Unfortunately it takes time just have to be patient which isn’t always easy. Good luck with everything hope it goes well for you
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Hi yes it has been a hard pill to swollow for sure. At 1st it was like not real til I spoke with my hematologist and went through several tests including the bone marrow biopsy. I did go through the grieving stage after that and that was horrible. All my numbers changed up and down the 1st week of taking that medication. And I’m kind of freaking out about my platelets going up so much with one week of treatment. (IMATIMIB) I also have the aches and pains tiredness and some nausea. I am experiencing some rectal bleeding idk if thats normal sorry TMI. Glad to hear you are regaining some strength gives me some hope. Because I’m mental not here. I had just started real estate snd im not motivated at all to continue plus its vary stressful.
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You can be in my bubble with me @jen1204 !!
Hi @jen1204 perhaps personally I would tell your medical team as soon as possible about all the symptoms you are having, they might be able to help
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Be kind to yourself
Sending you hugs 
yes I have told them some of the symptoms and I go in to soeak to the doctor on the 2nd of January 
so by then itll b 2 more weeks of medications so well see what happens then. Thank you for being here.
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Hi @jen1204 I was concerned especially about your rectal bleeding, better safe than sorry. xx
Hi @jen1204 Just to let you know that it does take a few weeks for the bone marrow to react to the medication so you are very early in the process.
Aches and pains are normal and do settle down after a few weeks.
Good luck with your next appointment.
x
Oh ok makes sense…when i see the actual dr itll be 3 weeks so hopefully things start looking up. Thank you
@jen1204 Everyone reacts differently and the levels drop at different rates but as long as the main results do go down then i would think you can feel positive. Most people do respond well to immatinib and i would suggest you ask your doctor any questions that come into your head. Don’t leave with questions you didn’t ask as that will niggle.
All the best
x
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Yes thank you I have 2 different appointments on monday.
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