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  #1  
Old Mon Nov 27, 2017, 02:52 PM
BrianA BrianA is offline
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FISH Result Help

Hello everyone. I've been lurking for a while since my diagnosis this time last year but thought I should get better at participation in this forum. To start, I'd like to see if anyone has additional information on my FISH results.

Specifically, my BMB shows the following: deletion 5q31, deletion 7q31, deletion 17p53.1 (p53), deletion 20q12, trisomy 8

My hematologist has said all is normal, but the more I research on the web, the more confused I become. For instance, there is mention that isolated del(7q) is associated with better prognosis/survival but add additional abnormalities and the prognosis worsens. del(5q) is also "good" but I'v also seen del (5q) with TP53 as strongly correlated with poor prognosis.

I am considering setting a second opinion but in the meantime, is there a way I should be looking at the above results? Do I read them individually or in concert with one another?

Your thoughts and opinions are welcome!
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Brian
Diagnosed Hypoplastic MDS RAEB-I w/5% Blasts (Nov 2016); treated with Atgam in Dec 2016 and completed cyclosprine course in May 2017; Blast 3-5%; Hypocellar BM; WBC .66k/uL; ANC 0.15k/uL; Platelets 71k/uL; RBC 3.54mil/uL; Hemoglobin 12.7g/dL
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Old Tue Nov 28, 2017, 12:32 AM
DanL DanL is offline
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Brian,

I am not sure what your doctor is referring to as normal with the cytogenetic abnormalities that you have listed.

Generally speaking 3 or more abnormalities is considered a complex karyotype, which means that they get bundled together, rather than being reviewed individually.

The unique part of your case is the hypo-cellular marrow. About 85% MDS patients fall into the normo-cellular or hyper-cellular categories. With hypo-cellular MDS, there seems to be a crossover in treatment for AA and hypo-mds, primarily the use of immune suppression, especially for relatively younger patients.

I am not a doctor, just a long-term mds patient. The relevant part of all of this is 1) are you responding to treatment? or 2) are you experiencing progressively lower blood counts, higher blasts, or lower quality of life.

The only currently known cure for MDS is a stem-cell or bone marrow transplant. That being stated, there are several people on the forums that have lived with MDS and treatments for several years before needing to proceed to transplant.

As for the second opinion, I believe that almost everybody here would agree that a second opinion, especially from an MDS center of excellence, would be a great idea. MDS is a difficult disease and you need to be comfortable and confident in your treatment path.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Tue Nov 28, 2017, 08:20 AM
Data Data is offline
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Normal?

Brian,
First off I agree with Dan. He had some very good comments. I am not a doctor so I am not offering medical advice - just my opinion. If you had abnormalities in all the chromosomes you mentioned, I wouldn't think that would be normal. An abnormality in chromosome 7 is never a good thing. If you have to have an abnormality, 5 is a good one to have if that is the only one you have. When they did my last biopsy before my transplant the FISH results showed 60% of the cells had monosomy 7. Did you biopsy mention what percentage of your cells had each abnormality? Are you sure the abnormalities you mentioned (deletion 5q31, deletion 7q31, deletion 17p53.1 (p53), deletion 20q12, trisomy 8) weren't the ones they were testing for and not the ones they actually found?

Good luck!!

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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Old Tue Nov 28, 2017, 09:14 AM
BrianA BrianA is offline
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Data and DanL,

Thank you both for your replies. After Data's question to me, I began to examine more closely the exact wording of the BMB report. In fact, those are the tests ORDERED, not the findings. In fact, buried in another paragraph was a simple note that FISH was NORMAL. At least I'm a bit closer to being able to understand my results. Thank you both!

DanL - just to answer a few of your questions. I am already at a Center of Excellence - Moffitt in Tampa, FL. My symptoms do mirror AA. If fact, after diagnosis, I was admitted for a round of Atgam treatment followed by 5 months of cyclosporine treatment. Unfortunately, that treatment didn't work and I am now back on Watch and Wait. During treatment, my blood counts for hemoglobin and RBC nosedived with no effect on improving my WBC as originally indented. As a result, we terminated the treatment. Now, my values are "stable but bad." My blast count has remained constant. RBC is mildly anemic, but WBC and ANC are terrible, but remain unchanged. Somehow, I'm not getting infections. Due to the risk, I am not yet ready for a BMT, although I've already met with the transplant team and have identified possible donors. We will just watch and wait until my numbers significantly change and then move forward with Vidaza before the BMT.

Anyway, I now feel much better and less anxious - again, thank you! I'll sit back and keep doing what I'm doing to stay active and healthy.
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Brian
Diagnosed Hypoplastic MDS RAEB-I w/5% Blasts (Nov 2016); treated with Atgam in Dec 2016 and completed cyclosprine course in May 2017; Blast 3-5%; Hypocellar BM; WBC .66k/uL; ANC 0.15k/uL; Platelets 71k/uL; RBC 3.54mil/uL; Hemoglobin 12.7g/dL

Last edited by BrianA : Tue Nov 28, 2017 at 10:03 AM.
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Old Tue Nov 28, 2017, 09:31 AM
Data Data is offline
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Smile

Brian,
Sure glad you didn't have all the chromosome abnormalities!! I had my prostate cancer treated (unsuccessfully) at Moffitt in 2013. I also had a second opinion for my MDS at Moffitt. I wound up getting treated (unsuccessfully) at Shands Cancer Hospital in Gainesville.

Again, best of luck to you!!

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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Old Tue Nov 28, 2017, 10:51 AM
maggiemag maggiemag is offline
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Brian:

So sorry you have to be here, but so glad your cytogenetic results were normal! I, too, was wondering how your doctor could call so many of them normal! And would have also suggested you go to a Center of Excellence. Whew, you must be in good hands at Moffitt. Although your whites and platelets are not stellar, you aren't anemic right now, but do stay away from anyone with an infection. Keep us posted.
Mags
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