5 replies to this topic

[acb]

I have been having a pain in my side pretty much identical to the pain I had at diagnosis. The pain started earlier this week but was sporadic. It has been pretty much a constant dull ache since yesterday (worst last night while trying to sleep, just like when I was diagnosed). I went to Urgent Care today for a CBC and everything looked fine from that stand point. My WBC was 6.8, RBC 4.35 and platelets 225.

My history: Diagnosed 7/9/10 (went to dr for pain in side that turned out to be enlarged spleen due to WBC of 149 & platelets were 1300). Started Sprycel 100 mg mid to late July; have been PCRU since September or October (I think October -- don't have my folder with me). I do know I had PCR tests Oct, Nov, and Dec that were all 0,000. I had another March 2011 from a different lab (had to switch onc. due to insurance) that was also 0.000 PCRU. I am still taking 100 mg Sprycel. The doctor at Urgent Care was pretty much useless (did not even listen to my heart or lungs or try to feel or push on my side or anything. He told me he had no way of telling if my spleen was enlarged. ??? I live close to Louisville, KY, and today was Derby Day so I am assuming he was the bottom of the barrel and didn't want to be there. Yeah, and I was there for 4+ hrs for all that useful information.)

Anyway:

1. At what point should I become concerned? Should I call my after-hrs oncologist # or just wait until Monday to call? I was going to call if my CBC was abnormal today.

2. Should I continue to take my Sprycel?

3. Why would I be having this much pain and why now? Oh, and I typically have a high tolerance for pain -- I had both children naturally with no epidural so this is not just me being wussy. I hate needles! But I can handle pain. :-)

I do have sporadic muscle and bone pains that come and go (in my arms mainly and sometimes in my ribcage area if I have had a long day), but this seems like my spleen to me. It is in the exact spot as before and feels the same.

I tried to search for related posts but most discussed pain/enlargement at diagnosis ... not 10 months into treatment.

THANKS for any words of wisdom you can offer!

[acb]

I should add that I wouldn't quit taking Sprycel without my doctor recommending it. I just wondered what is the normal course of action for this (drug break, pain meds, MRI, etc.), so that I am armed with knowledge before checking with my doctor.

Thanks!

[Trey]

This spleen pain can recur at times.  The spleen was stretched and now is trying to find its "normal" again.  The spleen has several functions, one of which is to sequester platelets until they are needed.  The spleen got very confused during the pre-diagnosis period, and can remain confused for a while, and may temporarily sequester too many platelets.  I call it the pissed off spleen syndrome.  Generally, if your blood counts are close enough to normal (as yours are) then it is not a problem except that it is uncomfortable at times.  Give it some time and it should calm down.

[acb]

Thanks, Trey! That is a relief! I have to admit that prior to diagnosis, I didn't think too much about aches and pains. When I went to the doctor at diagnosis, I really thought my side pain was a kidney stone or a pulled muscle. Never dreamed it was something more serious. So now, I tend to overreact more to aches, pains, etc. (instead of under-react like before). I just need to find a happy medium.

I can live with the pissed off spleen syndrome ... I was just letting my imagine go wild, thinking I had a tumor or my spleen was not working right or all kinds of other pleasant things. It hurt all night last night and still hurts today. Hopefully it will stop soon.

THANKS again!

[hannibellemo]

Hi, acb,

My onc rated my spleen size during a casual conversation as a 5 on a 1-10 scale. The pre-dx cat scan showed that I had had two spleenec infarctions, I remember the one very well as I had just been to the doctor that afternoon so when I started having severe pain in my shoulder while at a Council meeting where I had to present something I just gritted my teeth and got through it. What could possibly be seriously wrong, since I'd just seen the doc that afternoon? My stay overnight at a Holiday Inn Epress did not serve me well that night! Infarctions of the spleen are definitely not a good thing.

My spleen went back to normal fairly quickly, though. At my first three month checkup my Mayo doc could not feel it after having me on my back and side (although if he couldn't feel my spine at that point I would have been surprised).

It's still checked at every appointment and it never fails that as soon as I leave the doc's office AFTER he has told me that my spleen is not palpable I have twinges in my left side! I don't know if it is the power of suggestion or what!

Give it time and hopefully, everything will settle down.

Good luck, Pat

[Happycat]

Well, all I can give is my experience, which has pretty much been that whenever those docs and nurses start pressing on my spleen, invariably it starts to hurt and stays that way for a few days.  Were you doing anything that would have aggravated it?  Some sort of bending over constantly that would put pressure on it?

Traci