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Enlarged Spleen at DX


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#1 Tedsey

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Posted 18 September 2012 - 08:01 PM

Is there anyone out there who had a very enlarged spleen at dx and is now MMR or PCRU?  (I'm talking pretty large, like around 14 cm below costal margin.)

Tedsey



#2 Dana

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Posted 18 September 2012 - 08:49 PM

Yes, I do not know dementions but my spleen was swollen from my pelvic bone all the way up under my breast bone.  My white count was 368,000 at diagnosis.  I had 0% leucemic cells for the past year.  I was diagnosed 8-2003.  Gleevec for 5 years , now Sprycel for the past 4 years.



#3 Marnie

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Posted 18 September 2012 - 09:43 PM

Hey, Tedsey. . .I haven't been on much lately.  Totally consumed and overwhelmed by work.  If the leukemia doesn't kill me, the job just might.

How have you been doing? 

Marnie



#4 ChrisC

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Posted 18 September 2012 - 11:37 PM

Hi Tedsey,

My spleen was painfully large, and crowded out both my lungs and my stomach.

No measurements were made; it was just huge.

And things have worked out very well.

Good luck!

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#5 Tedsey

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Posted 24 September 2012 - 09:29 PM

How awesome Dana!  Thanks for the hopeful post! 

Here is to your continued PCRU!

Teds



#6 Tedsey

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Posted 24 September 2012 - 10:16 PM

Hi Marnie,

So far, all is very well.  Thank you for asking!  I have actually started running (a little).  I usually manage 2-4 miles 3-4 times a week.  Not so impressive, but a ton more than in the past.  Hope you got a good group of students this year and things are working out with the new onc and plan change.  It is a constant battle with our healthcare.  They just don't want to pay for much.  Can you imagine that?  Hope you are back on the bike.  Sorry, I have a bad memory, but I think you hurt your shoulder a while ago.  Hope that injury is all better.  Since my oldest kid started Kindergarten, I have not actively been on the board as much as I would like.  I lurk though.  Believe it or not, just getting my son to school and back takes a good part of the day (esp. if we run---well, they stroll).  My kids love to dawdle and I am not the greatest at timekeeping.  Nevertheless, it feels good to be back in a school environment (and get regular exercise).  I thought I would never miss it.  It was very nostalgic sitting in his classroom.  I even volunteered to help in the school, and to my surprise, I was told I am one of the room moms (do you have these in middle school?)!  Well, sounds boring, but it is exciting for me.  Since I now have been on both sides, I think I am pretty good at not being the pain in the a#* parent.  Met a young grandmother today who told me she had been receiving treatment for multiple myeloma the last two years.  I so badly wanted to share my story with her, but I was a coward.  I am too scared that it will get out, and if I want, I will never be employed in a school again.  When you still have strangers coming up to you 3 years after dx asking you how you are feeeeeling.... it makes me very uncomfortable, esp. when they are shocked that I am still alive and look well.  Letting the cat outta the bag has caused more grief than relief for me.  Speaking again of teaching, I am likely too expensive now anyway, (it's the kind of job where you gotta get tenure and stay if you want to remain employed---need I inform you).  Guess my teaching days are over.  There is always CML research...hee, hee.  I wish.

Hope all is very well with you.  Hope you are in good health and good spirits,

Teds 



#7 Tedsey

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Posted 24 September 2012 - 10:21 PM

ChrisC,

Glad to hear things are working out well!  It is probably for the better that no measurements were taken.  The Sokol score (which I hear correlates with Gleevec success) determines how great a risk you are to progress.  Wish I never knew.  Ignorance in many cases can be bliss.  May the new TKIs render the Sokol score useless.

Here is to your continued good health!

Teds



#8 TeddyB

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Posted 25 September 2012 - 03:40 AM

I will quote something Trey said earlier which i think fits in good with this discussion.

"The better indicators today are CML Phase at diagnosis and initial response to drug therapy.   If diagnosed in the Chronic Phase, that is obviously best.  And if the patient responds  relatively quickly to drug therapy, that is a good indicator of long term success as shown by the history of the early Gleevec clinical trials and the follow-up data.  Although Sokal and later Hasford tried somewhat to capture Phase information, their methodologies were both pre-Gleevec, and are not very practical in choosing treatment options in the TKI drug era.  Spleen size is probably the least useful data point, since the spleen sizes of men and women, tall and short cannot be equalized into a common formula with any precision (see link below).  Essentially, if a person responds well to TKI drug therapy, they are in great shape.

http://www.ajronline...4/1/45.abstract"

My onc didnt seem concerned with my spleen size at all, and mine was around 12cm from the costal margin, he just smiled and said, "No, that was more related to the old and outdated sokal score, we dont pay much attention to that any more" He said my bloodwork was that of a classic example of CML, and that i was in the early phase and he thought i would respond well to therapy, and so far (5 months in) i have, and my spleen returned to normal size within 5 weeks of Gleevec alone






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