Are there many of you that have an enlarged sple... - MPN Voice
Are there many of you that have an enlarged spleen that have either PV or ET ? I am worried that I do but many others don't appear to
Hi
I do, it doesnt cause me to many issues, no pain or feeling full, it has however contributed to portal hypertension in the past so i have gastric varices. The last time mine was measured it was 23cm
Paul
Karen,
Mine is currently 19cm, I can feel it and does make me feel full. I feel sick too at times after I have eaten. I have Liver Cirrhosis, PV, Portal vein Thrombosis and had varicies, so far I have had 21 banded.
My Heam has told me that it is no option for removal so worries me what will happen if it keeps getting bigger.....I am currently on Hydroxy 500 mg daily. I don't drink/smoke and I try to keep all toxins to a minimum.
Drink lots of water.
Take care.
Chelle
Hi Chelle,
Thanks for the reply. I drink 3 litres a day as advised and find that hard. I don't smoke or drink and on a healthy diet as have to shift timber myself to help myself. I get the sickness as well. Glad it's not just me then although it's not nice for us. I am currently on 1000mg hydroxy for 5 days then 500mg for 2 days.
Take care
Karen
Hi Karen
I'm just in the midst of diagnosis for PV. I am due an UltraSound this Friday to check abdomen, liver, kidney's, and spleen etc. I'm hoping it is okay as the Haematologist could not feel through to the spleen because he says I have thick and deep abdominal muscles. ;D Shame I can't see them though!
One thing I have noticed of late is a feeling of hunger pangs, but when it comes to eating I struggle as my appetite wanes after a few mouthfuls. I know that is a sign that maybe the spleen is enlarged but I aren't worrying yet.
Another symptom I've been getting in the last month is a feeling of acute nausea as I stir from sleep in the morning. It lasts until I get out of bed, five or ten minutes later. It feels like I'm about to vomit but don't. Is this a sign of spleen enlargement also? Do you get any feelings of strong nausea Karen?
Not everybody with MPD suffers with spleen enlargement so I wouldn't worry too much just yet. I'm not sure there is a whole lot they can do for it anyone besides removal or drugs to control its growth. If your doctor was concerned I'm sure he will order an ultrasound at some point to clarify the situation.
All the best.
Craig
Hi Ashto70.
I don't get the sickness feeling but I don't eat half as much as I did, so losing the extra weight I carry. I do get a dull ache behind my shoulder and some armpit pain, not sure if this is connected though.
I hope your ultrasound goes ok x
Thanks Karen.
Dull ache. Do you mean like a "growing pains" type sensation? I get it in my left arm and shoulder, and my legs too. I describe mine as bone pain rather than joint pain, but it may be bits of both.
Armpit pain sounds very unusual. Is the pain there different to the joint pain? I know there are many glands and lymph nodes in the armpit area, and they often become inflamed and painful to the touch when they are fighting bugs, infections, and viruses.
I'll report back on US when i get results or news.
Cheers Karen.
Craig
Hi
The nausea sounds like it might make sense as the issues with a large spleen are it resting on the stomach, hence the reason of feeling full early.
I think they must all enlarge in different ways, as i dont have issues with feeling full, so im guessing mine has just enlarged in a different shape so its not resting on my stomach.
Ive been told a few times mine is the biggest seen by that individual, but i dont worry about that too much as these conditions are rare and im sure im not too unusual for people with a MPN.
My haem isnt too worried about it as it doesnt seem to be causing me too many problems. It was suggested they remove it when it was discovered i had varices but my haem put his foot down and said that wasnt going to happen as the risk of doing so outweighed the issues it is causing.
Paul
Hi all, interesting to read about hunger pangs with the enlarged spleen!! I often have them and couldn't understand why I am ET, Jak2 positive with an enlarged spleen but haven't a clue as to how large it is. One learns so much from all the various comments raised. What a great bunch of folks you all are!!! E xxx
I have PV and have an enlarged spleen too and on hydroxy (10 tabs a week). Recently it has been giving me right gip: the pain is nearly constant and the discomfort when I'm trying to sleep is causing me to lose sleep. I had a ultrasound about 6 months ago and although it isnt very large (about 15cm) it does feel like it is growing again.
Hi. I had a large spleen when I was diagnosed. I believe it is still large but my haem doesn't seem to be too concerned.
Thank you for all your responses.
Hello Karen1970, I was diagnosed in 1983 with PVR ( I was 37 years old). One of the symptoms, although I didn't know it, was that I felt 'a lump in the mattress' when I tried sleeping on my left side. When I was eventually investigated for a blood problem the swollen spleen was found. The worst it has been is within about 2cm of my navel, but when the blood was controlled with Hydroxy' then the spleen was reduced. I have been used numerous times by doctors showing student doctors what a swollen spleen feels like and also in Surgeons exams. I now have MF and have recently started Ruxolitinib. This reduced the spleen more or less completely, but I wanted food all the time and have increased my weight, which is a real upset to me. In the past the spleen was very uncomfortable at times and spoilt my sleep occasionally. A few times I felt it entangle with the ribs which was painful, but only fleeting moments. I think I am beginning to feel it more again, so the haem' and I will keep investigating it. Hope this helps. Best wishes, MIchael
