MDS 5Q- Enlarged Spleen

[5Q-spray]

Hi Everyone! I was diagnosed in June 2009 with MDS 5 Q-. I am 37 yr old female. Doctor told me I was at the Interm. 1 stage. I had an ultrasound end of April and spleen was only slightly enlarged, today I had a repeat ultrasound and my numbers are larger. Does anyone else have enlarged spleen and if so are you experiencing any pain. I have been having pain on my left upper abdomen side for a week now. I'm new to all this and just researching as much as possible. I haven't heard from my doctor yet, the hospital just faxed me a copy of results @ my request. Just scared as to what can be lying ahead for me!

[Neil Cuadra]

There are a few discussion threads here at Marrowforums about spleen issues for MDS patients, including some that mention pain, discomfort, or a feeling of having a full stomach. You are welcome to search for "spleen" or "splenectomy" and read what others have said.

Upper-left-side abdominal pain can be a sign of a number of conditions, including an enlarged spleen. Since your test results indicate an increased spleen size, that's clearly something for you and your doctor to discuss. The AA&MDSIF mentions spleen removal here and says it is sometimes necessary when the spleen is larger than 20 to 25 cm, so you could check if your lab results include a comparable measurement. If you end up needing a splenectomy, ask about having it done laproscopically, since that is less invasive than traditional surgery and can require a recovery period of only a couple of days.

The underlying problem, of course, is your MDS. Since you have an IPSS classification of MDS Intermediate 1 and the 5q- abnormality, has your doctor recommended treatment with Revlimid (lenalidomide)?

[Bill F]

Hi 5Q Spray,

I too have an enlarged spleen; in fact it's large enough to be identified as severe splenomegaly. This designation is applicable when the greatest dimension of the spleen exceeds 20 cm. So far my size is estimated to be greater than 9 x 22 cm. See the following reference regarding the sever splenomegaly phrase:

http://emedicine.medscape.com/article/206208-overview

I believe it was just this last June that I became aware of some kind of enlargement. Then a week ago it started feeling like there was a softball in my left upper quadrant. A bit alarmed, I went to an urgent care clinic (having checked that they could have an ultrasound done if necessary). I had an upcoming appointment with my hemo and thought I'd give her a heads up with some ultrasound data. Alas, it was all for naught as the urgent care doctor said he knew the abdominal mass (readily palpable) in my upper quadrant was my spleen, even though I knew there were other possiblities. He did however call my doctor and then my doctor scheduled an ultrasound for the next day. All well and good except for the fact that when I had the ultrasound, the tech never ran the probe over the palpable mass area, in spite of my pleading. She said she can only do the spleen as that was what the order was for. The radiologist who reviewed the ultrasound data, wrote that my spleen is at least 9.2 x 22 cm.

My hemo has been tracking growth of the spleen by palpitating the tip just below the rib cage on the far left side of the upper quadrant. I have never discerned where that tip is. The doc on the other had been tracking it's extension downward. Now the abdominable mass that I could feel was to the left, toward the center of my body. I measured that area as being 5 x 18 cm. So to conclude this long story, I know I have a really big spleen and possibly an enlarged liver as well. I guess it's the extramedullary hematopoiesis that is at least one of the causes of organ enlargement. That phrase simply refers to the manufacture of blood cells outside the marrow where they normally are made.

I have a lot of discomfort and have been put on Hydrea, a chemo drug. This however, is dicey as it will make one's counts drop and mine are already low, Hgb 9.3 and platelets 48000. So I take one 500 mg capsule every other day with weekly CBC monitoring. I asked if I might have to have the spleen removed - she said that she didn't think it was an option (at least at this time).

Wishing you the best,