I was diagnosed with jak2 + and ET in March... my platelets were 621 but I have had a constant headache for 6 months... my haematologist started me on hydroxycarbamide 500mg once daily and 5 weeks into treatment my headaches had started to go. I was admitted to a&e over the weekend with what I thought were my gallstones flaring up! I was told to go to the surgical ambulatory unit today for a ultrasound scan and possibly surgery... my ultrasound showed something on my liver ? Lesion/abscess.. I then had to have a ct to show more detail.... the ct shows that I have a lesion on my liver... I have now been referred to a consultant and am awaiting an MRI scan to again show more detail of the lesion. I am of course very worried as they have said there is a primary which they need to find. I am only 39 and this a really come as such a shock to me as I was only just coming to terms with the ET. 😌
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Dazakella2010
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Not such wonderful news for you to deal w/ at this stage, and I can only empathise how difficult this must be for you to now have a second problem to face with your health. Nevertheless, please always endeavour to stay proactive and positive, because I truly believe doing so helps us all in a myriad of ways...
Please keep us all informed as to the MRI results, when you have them, and your medical team are able to shed more light on what might be the next steps etc...
My CT scan prior to starting FCR chemo for CLL showed up a lesion on my liver. It was decided to proceed with treatment but repeat the CT scan earlier than normal after my second cycle of chemo to monitor the lesion. The second CT scan showed the lesion had not altered in the intervening time and so was not of concern. Hoping for a similar result for you.
Hi love, many years ago this happened to me, I was scared to death... it turned out to be an Adenoma, I now have 7 of them.... sometimes my liver aches, but they said is it bad enough for a resection, I said hell no!!! They're just there... hoping for a good outcome for you... keep us all updated, try not to worry...... xxxx
What another almighty blow on top of everything else. As all the others have said, please keep us up to date about your MRI scan. Just remember, we may not be able to help with the physical aspects of any condition but I believe that the emotional support given on here is second to none. Good luck my lovely xx
It is really scary to hear "lesion" - but really it means "something is there and we don't know what it is." Lesions can range from something entirely benign/harmless to something that is a real health concern. The follow up testing will get to the bottom of this. I m JAK2+-PV and have "lesions" on my spleen, liver, and lung. All were determined to be benign - likely hemangiomas. I have hemangiomas all over my skin, so it makes sense I could get some internally as well.
Meanwhile - try not to worry too much and know we will have your back on this one. Hope you get good news ASAP.
Very sorry that you are going through all this, just wanted to send hugs your way and hope that you do get better news when further investigations are done.
Sorry to hear all you are dealing and I appreciate it is a difficult time for you waiting to get news - many thoughts and empathy goes out to you and keep us posted with your news
Yes this is not funny. Please try to help your liver stay clean our meds are a huge burden on this fabulous organ. I use an old recipe. I soak a small towel in strong sage tea. Put it over my liver area once a week. This can be done more often. I cover it with a piece of plastic wrap or a bag and then add a hot water bottle over it, like under a blanket for half an hour. This really detoxes the liver helping it to stay in a more optimal condition. These simple remedies work better than milk thistle, artichoke and whatever else. It’s worth a try. But please ask your doc about the lesion and the heat before you try this.
I’m so glad your headache is better! You were truly suffering from that. Hang in there. I just went through a very difficult month with my own massive shock situation. I up and running again. You will be too. Lots of love, Anag
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