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  #1  
Old Sun Oct 11, 2015, 03:07 PM
Shazza Shazza is offline
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Location: United Kingdom
Posts: 22
ICUS Idiopathic Cytopenia of Undetermined Significance

I've recently discovered that I've been neutropenic for 15 years which is longer than I initially thought (& wrote in previous posts).

2 years ago, 2 separate BMB's revealed hypocellular bone marrow.

Last week at my check up I was told that I have been categorised as having ICUS (idiopathic cytopenia of undetermined significance). Most information I've Googled on ICUS has been written fairly recently. It appears this is a new category - A 'not quite MDS' condition.

I don't have genetic abnormalities - well not any that have been identified yet. I'm told that as new tests are developed my samples are analysed for genetic mutations which may identify a MDS.

I've noticed there are a few people on this forum like me with unexplained low blood counts in 1, 2 or all 3 blood lines, hypocellular marrow & no cytogenetic abnormalities. Has anyone else ever been given an ICUS diagnosis?
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Neutrophils fluctuating between 0.8 & 1.7 since 2000.
Hypoplastic bone marrow (10-15% cellularity).
No cytogenetic abnormalities.
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  #2  
Old Sun Oct 11, 2015, 06:39 PM
Cheryl C Cheryl C is offline
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I had ICUS for at least 6 years before being diagnosed with MDS. At that time it was just called "idiopathic neutropenia". At diagnosis my haematologist thought I'd probably had MDS for 2 years. My GP had become complacent. At the time I was having CBC's 3 monthly and he had got used to seeing all the anomalies and treating the recurrent infections. I had also had low globulins for 9 years and that was never picked up on until I was diagnosed with MDS. I was only diagnosed because my GP wasn't available one day and I saw someone different. This GP insisted that I consult with a haematologist (hadn't done that for 3 years).

It's important to monitor your own blood results. You might want to create a spreadsheet. If you need an example I'm happy to private message mine.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #3  
Old Mon Oct 12, 2015, 09:35 AM
Marlene Marlene is offline
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Do you know what your vitamin D level is? I know of a couple of people who have had low WBC that were on "watch and wait". Their vitamin D was low and their B12 was a low normal. By fixing the nutritional issues, their white count returned to normal.

Now this may not be the case for you but it's is worth finding out what your D, B12, folate, zinc, copper and iron levels are. If you are taking any supplements, then you would need to stop 3 or 4 days prior to testing. Unless you are living in a very sunny climate and getting lots of exposure, vitamin D is usually inadequate. Most need to take more than the current USDA requirements. It's worth exploring.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #4  
Old Wed Oct 14, 2015, 01:41 PM
Shazza Shazza is offline
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Join Date: Jul 2013
Location: United Kingdom
Posts: 22
ICUS (Idiopathic Cytopenia of Undetermined Significance)

Hi Cheryl Thank you for your reply. Iíve followed your posts with interest as we do seem to tread a similar path. It was whilst collating the blood results for a spreadsheet, I discovered my neutropenia went back to the year 2000.

Thank you Marlene for your reply. Funnily enough I was diagnosed with B12 deficiency back in 2000 & have received bi monthly jabs ever since. Not sure about vitamin D but I have an excellent diet & (despite living in the UK) get plenty of sunshine!
__________________
Neutrophils fluctuating between 0.8 & 1.7 since 2000.
Hypoplastic bone marrow (10-15% cellularity).
No cytogenetic abnormalities.
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  #5  
Old Thu Jan 12, 2017, 08:22 PM
medicalenigma medicalenigma is offline
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Join Date: Jan 2017
Location: Laguna Woods, CA
Posts: 14
Hi Shazza, i am right there with you. I am given the MDS diagnosis so the doctor can treat me but my Fish and JAK1 and 2 and cytogenetic tests came back negative. So i consider myself ICUS.

For me my Anemia and Low Platelets are the mysterious blood symptoms. But for me a mysterious inflammation is confounding doctors too that could be the root of my ICUS/MDS. For others with anemia and neutropenia, Copper deficiency may be all that is wrong with them.

http://www.bloodjournal.org/content/...o-checked=true

I am getting ready to try marijuana CBDs to see what happens. They are suppose to be anti inflammatory and may help. I will keep people posted. My current HGBs drop down into the 6s and my platelets used to drop into the 6000 range before the miracle drug Promacta. Now they are stable at 50K-100K range.


Quote:
Originally Posted by Shazza View Post
I've recently discovered that I've been neutropenic for 15 years which is longer than I initially thought (& wrote in previous posts).

2 years ago, 2 separate BMB's revealed hypocellular bone marrow.

Last week at my check up I was told that I have been categorised as having ICUS (idiopathic cytopenia of undetermined significance). Most information I've Googled on ICUS has been written fairly recently. It appears this is a new category - A 'not quite MDS' condition.

I don't have genetic abnormalities - well not any that have been identified yet. I'm told that as new tests are developed my samples are analysed for genetic mutations which may identify a MDS.

I've noticed there are a few people on this forum like me with unexplained low blood counts in 1, 2 or all 3 blood lines, hypocellular marrow & no cytogenetic abnormalities. Has anyone else ever been given an ICUS diagnosis?
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