7 replies to this topic

[lseaturtle79]

Anything I can do for a enlarged spleen? The pain is getting worse!

[Susan61]

Hi:  I never had the enlarged Spleen, but what does your doctor say?  Where are you right now with your treatments?

Are you getting a good response on your TKI drug, and are you doing well with your treatment.  If you have had CML for awhile, and on a TKI that is working there should be some decrease in the size of the spleen.

I hope you can get some answers and relief.  Wish I could be of more help.

Susan

[hannibellemo]

Hi, Iseaturtle79,

It has been awhile since you last posted and I couldn't find anything to help me with your CML status. Please give us more information. All your profile says is that you were dxed a year ago (not sure "a year ago" from when).

Generally, when the spleen starts to enlarge again you are losing hematological response. Is your CML controlled by the TKI you are taking? I assume your platelet count is high since platelets are what the spleen sequesters.  To answer your question in some cases as a palliative measure the spleen has been removed, however, I'm hoping that is a last case scenario, although they were discussing that for a man on the www.newcmldrug.com site. He is just not able to control his disease with the available drugs at this point.

Sorry, we need more information to help you with your question.

Pat

[0vercast]

Have you had blood tests recently?  What's your white blood cell count?  Did your spleen shrink from your initial treatments after diagnosis?

I had a massive spleen when diagnosed, and my spleen shrunk down to a normal size as my WBC count decreased during the few weeks I was taking Hydrea to lower my WBC count.  It was dead and immature white blood cells that caused my spleen to swell.  All of my other blood counts were close to normal at the time of diagnosis.

[Trey]

Sometimes it is just from the spleen shrinking back to normal size, or even "phantom pain" after the spleen has returned to normal size.  If it is dull pain, it may be one of those.  If it is regular sharp pains, then that could be an issue for your doc to check out and maybe a CT scan.

[JoshLee]

I still get spleen pain from time to time. Sometimes it's because Tasigna causes excess gas to build up and other times I believe that during anxious periods I am swallowing a lot of air and that's creating unrest on my left side that sometimes feels like spleen pain. If you're new to CML and your spleen is still shrinking it could be the muscles around the spleen readjusting or the spleen just being confused from being filled to the brim with cancerous cells. Trey, does the spleen hide CML cells?

[Trey]

Josh,

The spleen cannot tell the difference.  It just tries to get rid of excess cells, and sequesters platelets until needed. 

[lseaturtle79]

I was diagnosed three years ago but told just over a year ago that I was in remission and relocated and went a long period with out insuranse, healthcare and meds. So Now my CML is back after being off meds for a year and I am starting with a new docter awaithing to start Gleevac again, however I did not have the spleen issuse the first time around

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