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Splenomegaly (Enlarged Spleen) 4 years 7 months ago #58901

  • GhostRider
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So over the last couple of months I have had an enlarged spleen and when I say enlarged it has been measured via a CT Scan as being 24.5cm.
Over the last few months since my spleen has become this size it has had some pretty nasty effects. It is essentially crushing my stomach, small intestine (to the point where I have to take laxatives otherwise nothing can pass though) as well putting pressure on my liver. I have also lost a lot of weight, approx. 4 inches of my waist line.

I know I needed to lose some weight but wow :)

Now this is where things get a little complicated. Other then my ITP I also have CVID (Common variable immunodeficiency) Now for the past 18 months I have been having weekly subcutaneous immunoglobulin infusions which as a by product treats my ITP :) What this also does is throw off some other blood tests that rely on showing antibodies as I am filled with other peoples :)

Now my Hemo seems determined that it is lymphoma even thou my bone marrow biopsy was clear. Her words were "the only thing linking an enlarged spleen and ITP is lymphoma" not only that but she is now in the process of getting me ready for having my spleen removed.

I am due to see my immunologist in a week and I a know she is not in totally agreement with my hemo.

So, just wondering if any of you fine folks have had issues with their spleen trying to remove itself from ones body :)

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Splenomegaly (Enlarged Spleen) 4 years 7 months ago #58910

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well, having an enlarged spleen is not normal for ITP and usually does indicate another problem if it is more than slightly enlarged. An enlarged spleen can also indicate liver problems, not just lymphoma. I hope she has thoroughly looked at that angle too. Since an enlarged spleen is prone to rupture, it is probably a good idea to have it removed regardless of the cause. Hopefully your doctors can pin down what is really causing it and not just guess.

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Splenomegaly (Enlarged Spleen) 4 years 7 months ago #58935

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I'm due to see a liver specialist soon but that is mainly because on of the blood test for Hepitaus B antibodies came back positive.

This is where having CVID and weekly infusion complicates matters.

The standard tests for hepitaus B antibodies will always come back positive for people having infusions like mine. My immunologist has informed my Hemo of this and that they tested me in December and I do not have hepitaus yet my hemo seems to be ingorning this.

I see my Immunologist in a few days so hopefully things might change.

At the moment I have no indications, symptoms of having any liver issues or lymphoma.

In past when ever my platelets have crashed my spleen has always been enlarged and after treatment it returns back to its normal size.

It's difficult to determine what my platelets are doing because of my weekly infusions will always boost them.

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Splenomegaly (Enlarged Spleen) 4 years 7 months ago #58936

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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That is a complicated situation. It can be difficult to juggle multiple disorders and figure out what is causing what. I hope they get you figured out soon.

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Splenomegaly (Enlarged Spleen) 4 years 7 months ago #58957

  • anon
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I've got a primary immunodeficiency along with ITP too. I've also recently been diagnosed with skin lymphoma. Also lots of my lymph nodes are odd, one in my neck has grown huge and others show up on PET scan. Of course the haemato-oncologist assumes more lymphoma but when biopsied they come back as reactive hyperplasia which is non-malignant. The spleen can also do the same, enlarge and react when there's nothing to react to, so it's quite possible that it isn't lymphoma. Having said that, lymphoma is more common in people with immunodeficiencies so does need ruling out.

One other thing, the immunoglobulin we use weekly for immunodeficiency is unlikely to have any effect on the platelets because it's far too small an amount.

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Splenomegaly (Enlarged Spleen) 4 years 6 months ago #59323

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Well I had my spleen removed a couple of weeks ago. Unfortunately there was a complication which meant I had to go back for emergency surgery a couple of days later due to internal bleeding.
I have been since released from hostipal (been home for 3 days now) and well yeah, the pain is just insane.

The good news is they found nothing when doing the pathology on the spleen and all other tests have come back clear. It appears the enlargement was caused by the ITP.

All I can say is that the last 4 months or so have been hell and the next few will be the same whilst I heal but hopefully I am now on the road of recovery

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Splenomegaly (Enlarged Spleen) 4 years 6 months ago #59337

  • poseymint
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Ghost Rider~ Sorry to hear you have to go through all of that. Good they haven't found lymphoma. Hopefully things will calm down and you can heal. Did your platelet counts go up after the splenectomy? Take care- feel better soon! and keep us posted when you can.

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Splenomegaly (Enlarged Spleen) 4 years 6 months ago #59354

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Cheers posey mint.

Yeah my platelets went up and are as the surgeon said, perfect

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Splenomegaly (Enlarged Spleen) 4 years 6 months ago #59356

  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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GhostRider , did you try any of the common ITP meds? Steroids, Promacta, NPlate, ect

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Splenomegaly (Enlarged Spleen) 4 years 6 months ago #59365

  • Dmspence
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I had my scene removed 3weeks ago. This was done with the hope that I would better recover from colon surgery. My platelets and white cells were dangerously low. The spline was said to have been grossly enlarge and looked like a loaf of bread (7 x normal size). The splinevitable was said to have been hard in spots and looked terrible. Good news all pathology reports came back normal and without indication of cancer or other problems. My white cells and platelets have sense returned to healthy levels. I hope this is encouraging and all goes well for you as well. Wishing best luck to you.

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Splenomegaly (Enlarged Spleen) 4 years 6 months ago #59407

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A yeah I have been used all the usual meds over the years.

Steroids are a big no no for me. Been on them twice and I had terrible reactions both times.

I was on Promacta for close to 18 months and it worked well.

This time round my Hemo didn't bother with anything due to my spleen being so big (it was pressing on my pelvis it was so big) and my platelet count was okay.

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Splenomegaly (Enlarged Spleen) 3 months 2 weeks ago #71742

  • Mikeesp
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Hi, was wondering what if anything was done about your spleen ? I was just diagnosed a couple months ago with an enlarged spleen 16cm. Just looking to see what other folks have done. Thanks

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