How big is too big?

[Chelle_]

Recent ultra sound showed my sleep has grown 1.2cm in 9 months it's now, 19.2. The Hydroxy doesn't seem to be making it smaller.....how big does it have to get before they decide to remove it or taken some kind of action? Hope your all ok!

[Paul42]

Hi Chelle,

I think it depends what sort of issues its causing you. Mine is 23cm and there are no plans to take out.

Everyone is very individual when it comes to determining course of action. Hows the hydroxy doing in managing your blood counts?

Paul

[Chelle_ in reply to Paul42]

My HB has dropped, platelets char finally hit 150 after being so low, severely anaemic red and white doing ok-ish....I feel better on these as apposed to the Interferon. Swings and roundabouts....have a good evening x

[skodaguy in reply to Chelle_]

You didn't say why you have a big spleen. Be careful about making a decision to have it removed especially if you get few symptoms from it as there is evidence people do less well after having it removed. It is major surgery when enlarged greatly and is still a major piece of your immune system. Removal means antibiotics daily for life.

[Paul42]

Thats what i was told too. Because of having varices the liver doctors suggested removal, but my heamatoligist said no because it is doing a job still. If its removed other organs such as liver have to compensate.

Chelle, you mention being severly anaemic, what are your blood counts? I too have suffered from anaemia despite having PV. My hgb at one point was just under 5.

[Chelle_]

I have liver cirrhosis so I don't think there gonna take it out and it is doing an ok job. It just gets a but painful and I feel rather full at times. Some days are better than others. I shan't be opting to have it removed... lol the less tablets I can take in a daily basis the better, Already at 12 tablets a day.....that's enough for anyone esp at 33!!

[MichaelS]

Hello 'Chelle', I think if the spleen is causing you a lot of discomfort and sometimes pain then the haem' can think about changing to Ruxolitinib (aka Jakavi). I have MF now but had PVR for about 25 years and the spleen regularly grew and caused a lot of discomfort and also interferred with my stomach causing constipation. For many years it was regulated by various amounts of Hydroxy'. My PVR changed to MF about 5 years ago and last November the haem' put me on Rux'. The main reason for using Rux' is to reduce the spleen and it has been successful in my case. Occasionally I felt the spleen entangling with my ribs and getting in the way when I was cycling, but all seems good now, and the bloods have settled down, making my haem' quite happy. There is now talk of Rux' being used for PVR so have a serious chat with your haem' about the possibility of starting it.

Best wishes to all, from Michael

[bernie62]

I chelle,

i agree with all our friends, The last thing you need, is to have your spleen taken out, I have trouble with my spleen, I am on ruxolinitib, but it still grows and shrinks. In fact i have a ultra sound scan tomorrow,

because its grown again, but we have to keep going, dont we, I would push to get on ruxolinitib, its working for most people, most people who have there spleen taken out, only have it out because they have damaged it, in a accident. So have a word with your heamo, and dont stop asking till you, get it.

all the very best,

Bernie62,

[bernie62]

I chelle,

I went for my ultra sound scan today, and i was told my spleen has grown to 22cm. the same as yours,

I see my heamo, next Tuesday, So i will have to wait till then to find out, if they are going to sugest anything that could help. The nurse who did the scan, said you can live without your spleen, you know,

So, i said so have heard, But i will be hanging on to mine, as long as posible if thats ok,

But she also said that its working ok, and blood is going to my liver as it should, so thats good news.

I will let you know what happens next week.

All the very best,

bernie62

[Titatagg]

PV diagnosed 3 years. Hi I also have a spleen over 20 cm... Very uncomfortable. I feel like I am 6 months pregnant again. The way it has been explained to me is that if my spleen was removed then the other organs may take the load and it is a lot more damaging for the liver to enlarge. So far hydroxy and interferon ( at different times ) have not reduced spleen size. I am very interests to here that Ruxonitilib mat soon be available for PV. Could you tell me what side effects you feel on this drug and how disease symptoms have changed. Many thanks