Enlarged liver

[Virghil]

Hello everyone! I'm 28, have been diagnosed with ET 3 years ago and have been under treatment with Thromboreductin (Anagrelide) for a few months. I got an ultrasound the other day and found that I have a slightly enlarged liver, don't know what to make of it, I did not find this in the list of side effects. I texted my doctor to ask what should I do about it, but she's always super busy and just replied "nothing" Anyone experiencing a similar problem? Thank you!

[mhos61]

Hi Virgil,

Welcome to the forum.

Sorry to hear of your diagnosis of ET at such a young age. I’m quite surprised you’re on any treatment, other than aspirin. Are you classed as ‘high risk’ for some reason? If so, it would be ideal if you could begin treatment with Pegasys due to your age.

I think hepatomegaly (enlarged liver) is sometimes associated with MPNs, but to a lesser extent than splenomegaly. I don’t know what it indicates however. I’m not aware if Anagralide may cause hepatomegaly. I don’t think it’s good enough that no explanation has been given.

I can’t emphasise enough that you should see an MPN Specialist. They will know the best way forward for you with regards to treatment, or indeed no treatment.

Mary x

[Virghil in reply to mhos61]

Hello Mary,

Thank you for your answer! I started taking Anagrelide when my platelet count went above 1,1 million and was experiencing fatigue, muscle pain and numbness in my hands. Now it's dropped to a little below 500k, I have been feeling much better. I am seeing a specialist, I would never self-medicate. She said this treatment is best due to the smaller number of long-term side effects. Why do you think Interferon would be better than Anagrelide? Thank you!

[mhos61 in reply to Virghil]

I was thinking, if you were needing treatment long term! Most MPN Specialists now consider Pegasys as the ‘go to’ treatment for younger patients. In trials it has had some excellent results.

I hope you don’t think I was inferring you might be self medicating. I was merely trying to determine were you seeing a general haematologist or an MPN Specialist.

Are you in the UK?

[Virghil in reply to mhos61]

I understand now I live in Romania and we do not have MPN Specialists, I am seeing a general hematologist. She recommended anagrelide over hydroxyurea as prolonged use of the later would increase my chances of developing acute leukemia. Interferon (Pegasys) was not considered.

I'm interested in reading about these trials, maybe you could share some links? I am on a Romanian ET Group on facebook and I see a great number of people complaining about the awful side-effects they are having from interferon, many of them having to change treatment.

[Paul123456 in reply to Virghil]

This is won watching. Dated 2016 so bit historic. Compares results from 3 trials.

oncologytube.com/video/upda...

Also google search ‘Ash 2018 and Pegasys’ for latest updates. Ash is annual MPN Conference.

[Virghil in reply to Paul123456]

Thank you!

[mhos61 in reply to Virghil]

Look up ‘Patient Power’ USA, particularly the section ‘Ask the Experts,’ there will be some video discussion on Pegasys there. Also, ‘MPN Voice’ in the UK. I’m sure you’ll find all the relevant information with regards to Pegasys.

There are some people on this forum who are on Pegasys who have had excellent results. Hopefully, some of them will respond. There will always be some people who can’t tolerate it, but others have said the trick is to start on a low dose (45mcg) and work up slowly if needed.

I have ET and am on hydrea, but I am 63. If I were young and had to start treatment I’d definitely be pushing for Pegasys.

Mary x

[mhos61]

Here’s an interesting discussion on Pegasys from two leading MPN experts.

patientpower.info/video/upd...

[Virghil in reply to mhos61]

This is gold, thank you very much!

[MPort]

Hi,

I am on Pegasys for about 13 years. I believe it for me the best current option available and am grateful to be on it. Yes there are side effects. Flu symptoms after injections, redness on injection site. And some people suffer many other different ones. But as I have PV and can't tolerate hydrea the alternative was regular venesections. They had such negative impact and put up PLTS and white count. So although Pegasys wasn't plain sailing and I still have minor reaction the day after, it has been a fantastic drug for keeping counts in good range. I wonder if it is available in Romania? When you have looked up the links you have been given above you will be in a better position to judge what is right for you. Best of luck. Mairead

[Meatloaf9]

Hi, I was told I had mild hepato-splenomegaly on an ultrasound, but a few months later I had a CT scan with contrast which should have been more accurate than the ultrasound and I had neither.

[wormwood]

I have e.t... I started on hydroxy which stopped working... was put on interferon injections.... the first one was a nightmare. But since that one I have 4 a week into stomach.... things are great blood counts lowered I only sneeze and ache a little bit but I do.them at night.... and take codeine. It's working....

[Xuzy]

I know this is an old post but can you tell me what size was your Liver to make a liver enlargement diagnosis