10 replies to this topic

[Tedsey]

I read an article linked in Trey's blog.  Dr. Drucker mentioned that, "The researchers also found that patients did respond less to Gleevec therapy if they were in a high-risk category due to such factors as an enlarged spleen or a high percentage of immature white cells in their blood."*

I am confused.  It appears most of us had an enlarged spleen upon dx.  I did.  Does this mean I have a poor prognosis on Gleevec, or am I in the 70% for success instead of the avg. 95% (which I understand after 2 months being dx it is probably impossible to tell exactly what my chances are)?  I read conflicting information that less than 10% of people dx with CML did not have an enlarged spleen (can dig up that article, but right now I am not sure which one). 

Very scared.  Not sure I understand exactly what he meant.  Is it that the spleen remains large even though taking Gleevec?  Luckily, it appears that I did not have many immature white cells in my blood at time of dx. 

Could anyone clarify?

*http://www.scienceda...61207160526.htm

[SunNsand]

   I don't have an answer to your question, but I had an enlarged spleen at diagnosis (caused weight loss) then it came back down to a normal size after being on Gleevec a few mths.

SunNsand

[PhilB]

Hi Tedsey,

The important question here is how much your spleen was enlarged by.  Almost all of us have some enlargement at dx, but some people look like they're pregnant with a basketball.

Spleen size is one of the principal factors in the Sokal or Hasford score which is used as an indicator of prognosis.  Note these scores are seen as less important than in pre-Gleevec days.  They are still a reasonable indicator, but nowhere near as important an indicator as phase at dx and initial response to Gleevec.  There are various places on the net where you can plug your numbers at dx into a calculator and it will give you your Sokal score.  In line with various other people I did this and then panicked when it came out as high risk.  The mistake we made was that you don't use your actual spleen size, just the amount by which your spleen was projecting below the level of your ribs (the left intercostal margin in doctor speak).

Basically:

• If your spleen wasn't spreading beyond the ribs or only by a bit then relax (if you couldn't feel it by prodding then it didn't extend beyond the ribs)
• If your spleen was truly enormous (believe me you would know if it was!) then you will probably be in a higher risk category, but as long as your were in chronic phase the odds are still on your side - and if you've had a good initial response that largely trumps the Sokal

Your spleen will quickly shrink back to its normal size with Glivec.

Take the little orange pill and chill.

Phil

[Trey]

The article you refer to is good in one way because it summarizes nicely the issue of how Gleevec has made CML a very survivable disease for most people.  But as with any summary, it does not cover the issues in detail.  The "high risk factors" is one example.  Also, since the risk assessment criteria were developed before Gleevec, many find them to be less useful today.

Overall, if you were diagnosed in Chronic Phase, the risk will be on the lower side, and 90% are diagnosed in Chronic Phase.  If diagnosed in Accelerated or Blast Phase, then the risk is increased.  A generally accepted definition of Accelerated Phase is 15%-29% blasts (immature WBCs), >20% basophils in blood, and possibly additional high-risk chromosome mutations.  Blast Phase is characterized by 30% blasts plus the high basophils and added mutations.  Note that there are various definitions, and that the CML Phases are a continuum.

It would be hard to be diagnosed with CML without a somewhat enlarged spleen, since the spleen is the first response to increased cells in the body, as it tries to sequester excess cells and eliminate them.  But it never stops trying, so it gets bigger and bigger.  But "enlarged spleen" generally means one that can be felt by hand.  I had extreme spleen pain at diagnosis, but the doc could not feel it.  There are two risk assessment tools, but they generally are just a Phase assessment.  I tried the Sokal one and it said I would die off within a couple years of diagnosis.  I was diagnosed in 2005 and have been PCRU for over 3 years.

http://oncopda.com/sokal.htm

http://www.leukemia-net.org/content/leukemias/cml/cml_score/

Spleen size discussion:

http://www.ctisus.org/rsna_2004/spleen/splenomegaly.html

[Tedsey]

Does not appear that the Sokol scale is accurate or up-to-date enough.  Why scare myself or give myself false hope?  I need to stay clear of that right now.  Having major issues with anxiety.  I'll check out the other articles.  Thanks everyone. 

My speen only started "popping" (Not sure how far beyond ribcage.  I just remember I couldn't suck in one side of my stomach without it looking slightly lopsided).  This happened about 3 weeks before diagnosis (it swelled pretty fast and belly button popped out; that's when I went to see my Dr. because I feared I had an umbilical hernia from just being pregnant.  My friend had just gotten one repaired--sure wish it was a hernia...).  My spleen had also been sore when the kids jumped on it a couple of weeks before it started to swell.

I had normal blood counts throughout my pregnancy, (now a year ago), and at 8 months before dx I had another blood draw, but that was normal too.  It appears the CML was caught on the early side, but my white count was still pretty high weighing in at 180,000.  Not sure if that has any significance either.  I am a newbie and will be reading more.   

[mountaindreamer1]

Hi Trey,

         Charlie's spleen was so enlarged they said it was down to his waist. He did also have alot of pain and like you said that is how we found the CML. He does not have the pain anymore and the spleen has reduced in size but still is very enlarged and can be felt during an exam.

         dawn

[gark]

I was diagnosed in Oct. 2005.  my spleen was painful, and I could feel it under my ribs, like a tennis ball.  I thought it was a tumor...I am now PCR weak positive, which is fine with me!  Dare I say...size isn't everything! LOL!   Hang in there, friends.

[Chris23]

I have this friend that works with me and he is having some issues lately. He is feeling extremely fatigue and he is having fever from time to time. He went for a check up and it seams that he might have liver problem. His doctor told him that he might also have enlarged spleen. He told him that he needs to watch not to get hit in the stomach because it will make things worse. Sometimes he has heavy breathing also. I was wondering can all these symptoms be related to enlarged spleen? Also what else he need to look after? Has anybody had similar experience?

[Trey]

Hard to say if it is from the liver problem or spleen.  If either are enlarged it can crowd the lungs and other organs.  If the doc was guessing about the enlarged spleen, the friend should have a CAT scan.

[Chris23]

Thank you for your help and advices. I really appreciate this. However it seams that his liver is fine. He now has pressure on his right side. He is becoming very worried because he has new symptoms and things are happening fast. His doctor scheduled him for an ultra sound and he took some blood, he said he wants to test his spleen. I will give you an update as soon as he gets the results.

[Chris23]

Well I have to say that he is getting better today. His breathing is back to normal, and the pressure is getting lower. He now has diarrhea but I think that this is much better then breathing issue. I have found that he has similar symptoms as some of guys that are discussing the spleen problems on another forum. So I just wonder could all this be caused with enlarged spleen?