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On August 19th i was diagnosed with CML, I started my treatment on August 30th and had a few side effects which they have now got under control. 

 

I know this may only relate to the ladies but on my monthly cycle, i am suffering from dizzy spells and sometimes collapse, my consultant thinks its related to my meds but i had this the month before i went on my treatment.  I am unsure if this is related to the CML but it scares me to the point that once a month i dare not leave the house.  

 

I collapsed yesterday fetching my daughter from school and felt so silly that people were running round after me, as i have only told family of the CML.  Does anyone else suffer like this if so can you give me some advice to what i can do or take to stop them please 

 

Kerrie

Hi Kerrie,

Welcome to our little club. No doubt it wasn't a membership you wanted but we're all here to help each other.

Do you have a copy of your latest blood report? I wonder perhaps if you are a little low in some blood counts, and that's contributing to making you feel a little weak? Low haemoglobin can make you feel a bit fatigued, dizzy, a little short of breath and that kind of thing. 

It's not uncommon to have blood counts that are a bit wacky at the beginning, until the medication settles things down. Speaking of which, what TKI drug are you taking? 

David.

hi 

I am on Imatinib 400mg 

my white blood count was 31.6 and after 1 week and 4 days of treatment is down to 18.4 my platelet count is 1250 now it was 1841 

the nurse said my hemoglobin level was good at 137 

I had the dizzyness and passing out episodes before going on the treatment but not sure if its a side effect of the CML i can deal with everything else but hate the fact that i can be out and about and then the next thing im on the floor. It scares me and just wondered if there was anything i could have or do to stop this happening 

K

Hi Kerrie.

I am male with CML so can't comment direct, however I just wanted to mention someone I know who was diagnosed many years ago (she is doing well now!) to maybe make you feel better. One of the main reasons she was pressed for the blood tests that led to her diagnosis, were these abnormal light headed and fainting episodes around her cycle. Obviously this then led to the introduction of Imatinib on diagnosis.

You may find your hemoglobin was low before diagnosis, as mine was. It possibly will take some time for your blood work to regulate and show clear trends.

My resting HR was very high all the time and I felt dizzy due to low hemoglobin before diagnosis.

You are very early into your diagnosis so give yourself some time.

Obviously I am not a doctor, just a CML'er so it is imperative you keep your medical team in the loop of how you feel and these episodes, as they may want to keep a close eye on things.

Hope this helps.

John

Hi Kerrie

Sorry to hear about your problem. You can certainly do without this. If i were you I would contact my doctor - GP/haemo/specialist nurse asap and ask for advice. 

Hope things improve,

Best

Chrissie