PV and Enlarged Spleen

[Csp928]

Hello All,

Looking for some feedback on what symptoms did you experience with an enlarged spleen and was medication prescribed to help. 

Many Thanks, Jay.

[tracey13]

My husbands spleen is slightly enlarged the consultant just keeps an eye on it he needs another scan next month.

My husband is pv jak 2 positive he's on hydroxocarbamide not sure if this helps with the size of the spleen. 

Tracey

[jane13]

Hi Jay, am not a clinician so this is just what I have gathered with respect to my condition. I had PV - now myelofibrosis - and enlarging spleen. Only real "problem" towards the end of the PV stage was that spleen started pressing on my stomach so I couldn't eat as much without feeling full up. 

However, guess I would ask your question the other way round e.g. "why is my spleen enlarging and by how much, and does this say anything about my disease progress and therefore the drugs I am on"?

 If not much enlarged then think that goes with the territory and gives no symptoms or problems. As I understand it mildly/moderately enlarged spleens are mainly due to stuff like processing more past-their-sell-by-date blood cells as we produce so many more than normal and it's the spleen's job to get rid of them. But great enlarged may indicate that functions that should be taking place in your bone marrow are moving to your spleen and that's more cause for concern. If greatly enlarged and/or uncomfortable I'd looking at the amount of hydroxy I was on and/or how often I had venesections and/or whether the disease was progressing and talking to my Haematologist. I took more hydroxy at one stage when my blood counts went up and my spleen went down in size: presumably it needed to process fewer spent blood cells as I wasn't producing so many.

I obviously don't know anything abut your situation so hope this is relevant!

[cheridiane]

Hi Jay

My husband has MF and takes ruxolitinib.  That has not stopped his spleen from enlarging, and last year he had a round of radiation treatment which shrunk the spleen by 50%, from 27cm.

Prior to that he was unable to eat and extreme fatigue, and continual coughing.  He felt hugely better after that, but this year the spleen began enlarging again, so more radiation treatment, which worked very well.  He is able to eat reasonable sized meals again.

Hope they can work something out for you ..

[Ticchic66]

Hi. I also have PV with enlarged spleen and liver. It feels a bit tender there and because I am now quite slim, that part of my abdomen protrudes a bit. My veins are blocked as a result of the excess blood (I have secondary budd chiari syndrome)   To be honest., for me, the enlarged organs (I think my spleen is 12cm and it should be 8) don't give me symptoms.. This may change but, as the others are saying, it's not something they worry too much about as far as I'm aware.. Think keeping the blood levels down will keep this constant. It's only my experience but I hope it helps x

[Paul42]

Hi

I have PV and have whats called a 'Massive' Spleen, its 22.5 cm, i think anything over 19.5 cm is classed as massive and under that enlarged.

It is really strange as i get no symptoms externally or pain or anything...but have issues inside as a result of the extra pressure caused (varices in my stomach).

I am on Rux but it has hardly shrunk it, about 1cm thats all.

My spleen has been enlarged for years, i would estimate since about 2003, although only diagnosed 3 years ago. I could always feel it, when i went to the GP's years ago about it i was told it was likely to be muscle definition as i worked out a lot and was probably just favouring my left handside....i didnt always really believe it but i guess you want to beleive you are well.

Regards

Paul

[Twinkly]

I have m.f. Now    I started with PV .but progressed ,,after bone marrow testing ..I was on the magic trial for ruxulitnib ..it was excellent for me ,,I lead a very active life running my dog show kennels ,so I need to be well ..my spleen is very stable on this drug ..maybe a word to your doctor will help to encourage a change for you ,,twinkly x

[Kisses]

Hi my husband is on ruxolitanib  for MF last year he had radiation for an enlarged spleen it worked wonders and shrunk it by half  the radiation cased his platelets to drop and his iron level  right down but a course of 5pints of blood has brought all the platelets and iron back up weight up appetite up so finger crossed he's happy at the moment  his experience with an enlarged spleen was first he had a splenic infarction very painful bur little niggles now and then every one is different with this awfull illness  hope you get on well in the future  X kisses