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Pleural effusion - dasatinib

Just to update everyone following my pleural efffusion in December 2011
It has now been established that I have a chyle leak which is causing the pleural effsusion in my lung linning.
They are doing further tests and \i am under Thoraic Medicine team also.
I have had lots of tests to check that nothing else is causing the chyle leak and to establish that dasatinib is the cause.
But today on seeing my Consultant after have a ca2 something blood test - they have discovered that there is a marker which could be ovarian cancer - or it could be the leukaemia - so they are going to do an ultra sound on my pelvis to further investigate.
I am so worried - I dont seem to have any of the symtoms of ovarian cancer although I do know it is called the silent killer.
Its been 9 months of constant worry but I look a picture of health.

Any advice please

Dear Jacqui,
on the one hand you seem to be nearing an answer regarding the cause of your problem with pleural effusion, whilst on the other you now have an extra worry that you 'might' have a marker for ovarian cancer.
I am at a loss here as I am not sure what such a marker is, but I do understand that these days- if ovarian cancer is detected early then there are very effective treatments available.
The fact that it is known as a 'silent killer' is not very helpful as this can be misleading- in fact you could say the most disease is silent in its first stages of development?

From what I have read, ovarian cancer does have symptoms early on- but like CML they are pretty general and can be put down to other less serious health issues... for instance, abdominal bloating.

The thing is to remember that to be forewarned is to be forearmed and if the test you mention is further cause for more investigation you should also remember that not all ovarian cysts/tumours are malignant. A friend of mine recently went through some months of worry for the same reason- she did have a rather large ovarian tumour which when removed was found not to be malignant. But she had endured a lengthy period of intense worry and fear.

I suggest you do some internet research to at least understand the 'markers' and tests your doctors are referring to. If you do not understand the words then it is always more frightening.

Sandy

Hi Jacqui
Sorry to hear you have this latest worry, it must be awful for you. I have looked on the MacMillan website, and it says there is a CA125 test which is a marker for ovarian cancer, but can also be an indicator of other cancers (including i guess CML) so fingers crossed this is what it will be, hope this helps
Take care, Julie

Hi Jacqui
Sorry to hear about this, it's bad enough to have the effusion but you don't need the extra worry. Keep us updated and let us know what the results are
K

Hi thank you all for your comments. I am having a internal ultra sound on Wednesay and I am keeping my fingers crossed. Will keep you all posted

Jacqui

Hi Everyone

I have had all my tests back and they have all proved negative. It appears that everything that has happened since last Deecember has been caused by dasatinib.

They have been extremely cautious and have checked most parts of my body (excluding my brain hee! hee!) and the chyle leak causing the effusion has at last gone and I dont have ovarian cancer and they think the pockets in my lungs have been caused by the pleural effusion perhaps being there for so long and hope this will be better on my next scan

I have seen my consultant today and he has now put me on Nilotinib - so fingers crossed that I wont get any side effects that will stop me taking this drug.

Best wishes to you all

Jacqui

Hi Jacqui,

All good news for you re ovarian cancer. Wishing you good luck with the new TKI. I know Naomii recently changed to nilotinib and is doing very well.

Best wishes,
Sandy

Yes I have heard good things about Nilotinib - the good thing my PCR hasnt risen much whilst off the drugs for 9 months Im still at 0.028 - I was 0.003 so hopefully I can get back down a log now

Jacqui