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Polycythemia causing enlarged spleen

Posted by beebo @beebo, Mar 6 8:56pm

My doctor (oncologist) had me have an ultrasound to check the size of my spleen and it showed it to be enlarged at 18cm with normal being about 12cm.
I was diagnosed with PV three years ago and have been on hydroxyurea with periodic phlebotomies since then. My red and white blood cells and platelet #’s are consistently above normal. They have remained stable and I have not needed a phlebotomy for a year. Next visit with my doctor is next month. I don’t have any discomfort or pain from this and I’m taking the hydroxy 4x week @ 500mg.
Anyone here dealing with this? Not finding much info as to what my treatment options might be. Thanks!

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snakebite | @snakebite | Mar 7 7:27am

After many years of dealing with MDS and MF my spleen was Huge. I had a good deal of pain and could not eat very much at a time. The doctor started me on VONJO, and my spleen shrank back down very quickly! I've been on VONJO for the past couple years and the Spleen has not enlarged again.

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1 reply
robinll | @robinll | Mar 7 10:20pm

I have PV, now for 4 years, extremely high PLT counts, high WBC and many other anomalies but my spleen is in good shape. No enlargement, no distress at all. My diet is very good, lots of fruits and vegetables, no processed meats and almost no processed foods at all plus a limited amount of sweets. Actually, I feel rather good and not really suffering from this blood disease. Your body is an organic machine, take care of it by supplying it with high quality fuels.

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beebo | @beebo | Mar 7 11:55pm
In reply to @snakebite "After many years of dealing with MDS and MF my spleen was Huge. I had a..." + (show)
@snakebite

After many years of dealing with MDS and MF my spleen was Huge. I had a good deal of pain and could not eat very much at a time. The doctor started me on VONJO, and my spleen shrank back down very quickly! I've been on VONJO for the past couple years and the Spleen has not enlarged again.

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Thanks! I’ll look into that

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beebo | @beebo | Sep 12 11:45pm

I have been being treated for PV going on three years now. At my last appointment, my doctor told me that my spleen was about 50% larger than normal and that this was due to it having to process the excessive number of blood cells produced by this condition. My next visit is closer up and I’d appreciate any suggestions as to what questions I should be asking about this. So far I’m not experiencing any discomfort or pain as a result of this. Thanks

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2 replies
rebaheizer | @rebaheizer | Sep 13 6:48am
In reply to @beebo "I have been being treated for PV going on three years now. At my last appointment,..." + (show)
@beebo

I have been being treated for PV going on three years now. At my last appointment, my doctor told me that my spleen was about 50% larger than normal and that this was due to it having to process the excessive number of blood cells produced by this condition. My next visit is closer up and I’d appreciate any suggestions as to what questions I should be asking about this. So far I’m not experiencing any discomfort or pain as a result of this. Thanks

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I have a friend who donates blood-do you have a specialist?

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1 reply
beebo | @beebo | Sep 13 11:51pm
In reply to @rebaheizer "I have a friend who donates blood-do you have a specialist?" + (show)
@rebaheizer

I have a friend who donates blood-do you have a specialist?

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My specialist is a really great doctor who’s specialty is hematology and oncology. Part of my treatment was getting periodic phlebotomies but I have not had any in one year because my #’s have been stable. I’m told you can’t donate blood if you have Polycythemia. (Hated to watch them toss the pint of blood they drew from me into the trash can)

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beebo | @beebo | Sep 13 11:52pm
In reply to @beebo "I have been being treated for PV going on three years now. At my last appointment,..." + (show)
@beebo

I have been being treated for PV going on three years now. At my last appointment, my doctor told me that my spleen was about 50% larger than normal and that this was due to it having to process the excessive number of blood cells produced by this condition. My next visit is closer up and I’d appreciate any suggestions as to what questions I should be asking about this. So far I’m not experiencing any discomfort or pain as a result of this. Thanks

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Sorry! I meant to post this under Blood Disorders

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