Someone please answer this

[Natweb76]

My sister was diagnosed in October with cml after she said she needed some blood work done from feeling unwell. She has developed a mutation that is resistant to most treatments. She is going down hill.

Someone please answer my question. 1 year prior to her Lukiema she randomly had both retinas detached. She also spent the next year getting surgeries for her eyes. Why didn’t the retina specialist refer her to get checked for leukemia that year. Before she was diagnosed AND the hematologist has never thought the eyes retinas and Leukemia have anything to do with each other.

I was just freaking reading that there is a certain treatment of Lukemia for patients with the eye retina symptoms??????

[Jm954]

Hi Natweb76,

Lots of people get detached retinas every year and there would almost certainly have been nothing to make the doctor suspect leukaemia. The eyes are rarely infiltrated and it would be rarer for them to be affected by CML. It would be unusual for a blood test to be part of the tests done for a detached retina unless there was signs of bleeding, nerve problems such as a palsy or other abnormalities when the retina and eye was examined.

I'm sorry to hear that your sister has developed a mutation that means she is resistant to her treatment. There are several treatments for CML, the first ones to be tried are the first and second generation tyrosine Kinase inhibitors but there is a third generation TKI called Ponatinib which can be effective when the others have failed. Alternatively, if your sister if fit enough, she may be considered for a bone marrow transplant or a clinical trial of a new treatment or combination.

CML can develop very quickly and I have seen patients increase their white cell counts very dramatically in a short time so a year ago there would almost certainly have been no sign of it, even in her blood counts.

I hope your sister's doctors find an effective treatment for here and I wish her the very best.

Jackie

[Natweb76 in reply to Jm954]

Thanks for your response. It’s so rare that most people on here would probably say the same thing. A specialist though should have known to have her sent to get checked for cml. Even my sister had them stumped. After a little digging around even I found other patients just like her.

Story

[Natweb76 in reply to Natweb76]

I have read so many stories like this and some of them we just as young as my sisters. There is a.always an underlying condition especially when it’s happening to both eyes at the same time

[Jm954 in reply to Natweb76]

I did do a search of the literature on line and almost every case was acute lymphoblastic (ALL) or chronic lymphocytic leukaemia (CLL) which are very different leukaemias to your sister's. In most cases the eye disease and leukaemia was diagnosed shortly after each other.

I was trying to say in my previous answer that unless there were other features associated with the retinal detachment, such as the exudative element, then there would have been little or nothing to make them think they needed to do a blood test.

Also, CML can develop very quickly (white cell counts can double every week), it's rare for it to be very slow, and so I would be surprised if there was any overt evidence of it at the time of the retinal detachment which was a year from the CML diagnosis.

I'm sorry your sister is facing this but, from what you have said, I don't think her eye specialist is blameworthy.

[DrunkJam_UK Administrator]

Hi, I am so sorry to read of your situation. I know it can be a very, very scary and anxious time. it is really important to note that different types of leukaemia behave very differently, so, be very careful when you are reading research studies. Detached retinas are also, as mentioned extremely common (I myself have to keep a special watch on my eye symptoms as I have markers that suggest the risk of retina detachment) I definitely don't have leukaemia.

All I can say is, I fully understand the anxiety, and the need to find out as much as possible, and to make sure all the right things get done. I *really* do. Just be cautious.

I also wanted to say, the board here is full of people, like Jackie who answered you already, who know SO much about all kinds of leukaemia, and who understand the feelings, so, do keep us posted, and feel free to let us know how you are feeling, and how your sister is doing, and get support etc.

Sorry you are on this journey, but welcome to the board.

[HAIRBEAR_UK Administrator]

Hi Natweb76 welcome and thank you for sharing at such a difficult time. Please can you confirm which country you are in and we can signpost to CML support and information resources that may be of help as your sister navigates next steps. I ask as I note your spelling of Leukaemia and haematology suggests you may be outside of the UK.

BW

Nick

[Natweb76]

I am in magnolia Texas in the United States. I didn’t realize this support group was outside of the United States