10 replies to this topic

[MomMom]

Okay this maybe a question that was asked before, but has anyone had pain with enlarged spleen?  I definitely have a lot of swelling in my abdomen and pain in the left quarter but have not been diagnosed as yet as having enlargement of the spleen.  My onc/doc checks regularly for any signs of change.  The pain is new.

One more, has anyone fainted, had shortness of breath as a result of side effects of Gleevec?  Wierd question, I know. I've been on Gleevec since diagnosis in July, 2008 and except for the dastardly "D" which rears its ugly head on occasion, I'm managing quite well and reached PCRU finally.

I've been reading the posts, just not posting for a while.  God Bless you all.

MomMom

[Trey]

It is rare to have lower abdomen spleen pain.  Most often it is a sharp pain on the far left side under the rib cage at approximately sternum height or maybe just a little lower (so fairly high on the left side).  It can also show up as a "fullness" of the stomach since it can squeeze on the stomach.  See location of spleen in the picture below, and you can see it is higher than most would expect.  But it can protrude rarely into the abdomen, but your doc would feel it easily.  Pain in the abdomen on the left side is most often in the bowels.

http://doctorshosp.a...id=1&gid=002340

http://www.mayoclini...ECTION=symptoms

http://www.google.co...ved=0CCgQ9QEwBg

[Tedsey]

As a woman diagnosed with a grossly enlarged spleen (seriously, I can look up the dimentions for you), I experienced it as achy, kind of like a bruise.  I also had fullness when it blew up.  I did not feel any sharp pains.  I didn't even notice it hurt until my kids jumped on me (so, only when it was touched).  Then, about 2 weeks later it swelled and my body looked lopsided (still only hurt when touched--it wasn't the worst pain in the world).  It seemed like it all happened very fast.  That's when I went to see the doc.  Never felt sick.  Had no night sweats, fatigue, etc.  It was my only symptom.  Hope this info helps.  Hope your spleen is fine and you stay PCRU. 

Best wishes,

Tedsey       

[nathaliece]

MomMom,

I had severe pain from an enlarged spleen at the time of my diagnosis but my spleen reduced to near normal size within 2 weeks on Gleevec.  The pain started as a dull toothache-like pain on the left side and then became a stabbing pain that was very sensitive to touch.  I wish you the very best.

Nat

[hannibellemo]

MomMom,

Like Teds I had a "markedly" enlarged spleen, but until I had severe pain radiating to my left shoulder (the CT scan showed I had enfarced my spleen, probably twice, when I experienced that pain) I didn't even notice it. I agree, pain means something somewhere isn't right and it needs looking into.

Good luck!

Pat

[WoofWoof]

Yes I had pain on the left side of my abdomen before my dx. but kept thinking I had pulled a muscle. Little did I know then that my spleen was twice it's normal size.

I've not fainted but have been light headed at time. Congrats on the PCRU.

[MomMom]

Thanks for the all the comments and advice.  I will get checked at the docs next week.  After a while you speak less and less of pain and other oddities that go on with CML.  If I complained about every pain and soreness I have, I would be labeled as a hypochondriac!  Just about everything wrong with me is related to CML and/or Gleevec.   So mostly I'm fine.  No one else except other blood brothers and sisters have any knowledge of what we all go through. I am thankful for all or you.

My concern about the pain in my side is that if I am PCRU why would the spleen be acting up now?

MomMom

[Trey]

IF your spleen is actually enlarged (questionable) and you are PCRU then you have some other problem.  There is such a thing as post enlargement spleen pain, which means the spleen is still p.o.'d about what happened to it, but it is no longer enlarged.  I would expect you have p.o.'d spleen syndrome.  (But don't rule out other unrelated possibilities.)

[Lorilynn]

Absolutely I had terrible pain in the spleen area. It just "hurt" to the point that I couldn't sit comfortable, or lay down comfortably, or even stand upright without pain.  Even breathing hurt, because of the pressure of that big ol' spleen.  There was NO way to get comfortable. Plus, the "fullness" I'd feel after eating just a few bites of food caused me to lose 1-2 pounds per day (which was nice at first, since I could afford to lose weight at that time.)  Ultrasound and CT scan confirmed splenomegaly. In fact, the surgeon said it was one of the largest he had ever seen!   A splenectomy was attempted, but once they cut me open, it was obvious that there were too many other organs to which the lymphoma had attached itself from the spleen, so they merely took biopsies and sewed me right up again.  The oncologist wanted to wait another six weeks before beginning R-CHOP, to give the incision time to heal,but the  pain and weight loss got worse and worse, so I only lasted 2 weeks before I called the doctor and insisted he do something.  It was decided that the risk of the wound not healing wasn't as dangerous as a delay in chemo would be, so I began chemo just two weeks after surgery.  And ended up with an open, infected incision for the next 6 months.   But I felt better immediately after my first round of Rituxan.

The bad news is, even though I'm technically in remission, I still have spleen pain since it's not "dead" yet (although I was told chemo would "kill" it and it would eventually shrivel up and be absorbed back into my body.)  Instead, it remains quite large and inflamed, although not nearly as large as before I began treatment.  Oxycontin allows me to live with the pain fairly well, but I still can't take a deep breath without pain, and even modest, light activity or exercise leaves me doubled over.  I'm told it WILL go away someday...hopefully.  But more than one doctor has admitted it might not go away, ever.  But I'm ALIVE,  and that makes me HAPPY.

Age 48

Diffuse Large B Cell Lymphoma

Diagnosed April 2010

5 courses of R-CHOP

In Remission since Sept 2010

[MomMom]

Thanks, Trey.  It has crossed my mind that something else is going on and will have it check out.  Any pain that doesn't go away is a warning that something is amiss.  I am so tender and full feeling and it isn't fluid or fat.  I will update the forum after my checkup.

LoriLynn, my goodness.  You have been through some stuff.  Glad you are in remission from the lymphoma. I have a hard time getting comfortable and do have pain when I take a deep breath.

My husband (a cancer survivor) and I have a saying 'if I can get up on my on each day, dress myself, feed myself and am ambulatory, I am doing well."  Simple but a joy to realize I am alive!  I still check the obits everyday to make sure! 

By the way, my daughter-in-law is also a Lori Lynn.

God Bless us all.

MomMom

[Susan61]

Hey Mom Mom:  I do not think its your spleen, but any pain you get is not normal.  It does not mean its anything serioius, but get everything checked out.

It is so weird how something so simple can cause so much discomfort.  Do not forget to talk about the fainting issue also.

I just went through all kinds of tests, and they still do not know what was wrong with me a few weeks ago.  You know I am praying for you.

Please let everyone know what you find out.  You have so many people here who care.

Susan