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Optical Orbit and CML

I have had CML for nearly 3 years and it has been successfully treated with Imatinib. My dose was originally 400mg. Because it induced anaemia it was dropped too 300mg and then to 200mg. The cancer continued to be reduced very successfully.
I have had a problem with an eyelid dropping and then some swelling under the eye. The eye department of our hospital, having examined the eye, have decided to take various biopsies in a 2 to 3 hour operation.
I have now read an American article about orbital problems with CML.
I would like more information from you. My consultant is not a CML specialist, would it be better to come up to Hammersmith at some stage, for a consultation. Your department was recommended to me at the onset of the CML.

Patricia Hann

Hi Patricia,

We are an independent small charity and though many of us know the clinicians at Hammersmith well, we have no formal links to the hospital and we are not part of it.

We do have details on how to easily contact the clinical team at Hammersmith at this page: https://cmlsupport.org.uk/asktheexpert

David.

Hi David,
Thank you for your reply and I understand about Hammersmith.
However 1. In your opinion is it best to consult a CML specialist when a problem such as above occurs?
2. Could you explain the connection between CML and the Optical cavity?
Regards,
Patricia

Hi Patricia,

Obviously I have no clinical background, but over the years I have seen many people with CML complain about puffy eyes. If you use the search feature on this site you’ll find many people complaining about it, so it would seem for sure there is a link between eye inflammation and imatinib. I don’t think I’ve found any patients who have found a straightforward solution to this problem though.

Perhaps you could ask your doctor to contact Hammersmith using the same “ask the expert” service with details of your biopsy result and other details? The service is not just for patients, in fact an very important aspect of it is for non-CML specialist doctors to contact an expert to help treat their patients better.

David.

Hi David,

That is very useful information.
I have already told my GP about this service and she was extremely interested.

Thank you for guiding me to information on puffy eyes.

Happy Easter

Patricia

Changing to Dasatinib cleared up my puffy swollen eyes within days .Having a biopsy sounds a bit drastic .

Thread continued from: 
Hammersmith Hospital: Ask the CML Expert