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MDS Myelodysplastic syndromes

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  #1  
Old Thu Feb 4, 2016, 06:35 AM
Cheryl C Cheryl C is offline
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Copper levels

Hi everyone. Now that our dear Chirley seems to have ceased posting I just thought for the sake of those with new MDS diagnoses I should mention the possibility of low copper levels inducing MDS, and in particular anemia and low neutrophils. Here are some links to studies:

http://www.ncbi.nlm.nih.gov/pubmed/17236184
http://www.bloodjournal.org/content/...o-checked=true
http://www.haematologica.org/content/92/10/1429
http://ajcp.oxfordjournals.org/content/132/2/191

I couldn't find any really recent studies. I'm interested to know if anyone else on the forum has discovered that low copper has either resulted in a diagnosis of MDs or influenced their blood levels.
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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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  #2  
Old Thu Feb 4, 2016, 04:06 PM
curlygirl curlygirl is offline
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This is not about MDS but sideroblastic anemia, however the reason for the sideroblastic anemia was that 13 people were taking high levels of zinc for long periods, resulting in copper depletion, which resulted in "anemia, granulocytopenia, and bone marrow findings of vacuolated precursors and ringed sideroblasts". So while the woman in your second article (the original I read) had a copper absorption problem, if you take a lot of zinc it can be causing the same low copper problem.

http://onlinelibrary.wiley.com/doi/1...60217/abstract

Abstract

Zinc ingestion has become increasingly popular in the lay and food faddist population. Herein described by way of a case report and review of the 13 cases in the literature is the syndrome of severe anemia associated with excessive and prolonged intake of oral zinc. The syndrome is characterized by anemia, granulocytopenia, and bone marrow findings of vacuolated precursors and ringed sideroblasts. Serum analysis reveals increased zinc levels, decreased copper levels, and a decrease in ceruloplasmin. The mechanism appears to be zinc-induced copper deficiency, which is instrumental in producing the profound bone marrow abnormalities, as zinc itself is of low toxicity. Importantly, the syndrome is totally reversible with cessation of zinc intake. Hematologists should be aware of this form of reversible sideroblastic anemia.
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  #3  
Old Fri Feb 5, 2016, 12:34 AM
Cheryl C Cheryl C is offline
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I posted these articles so that anyone newly diagnosed with MDS and having in particular, low neutrophils, is aware of the possibility of a copper deficiency - particularly patients with neuropathy and/or gastric complications.

NCBI - "We conclude that copper deficiency should be considered in all patients with unexplained anemia and neutropenia or myelodysplasia"

oxfordjournals - "copper deficiency is likely an underrecognized cause of anemia and neutropenia and may masquerade as a myelodysplastic syndrome (MDS)"

Haematologica - "We recommend copper level assessment in patients suspected of having low-risk MDS, especially those with gastrointestinal disorders and neuropathy."

Blood Journal - "copper deficiency should be an integral part of the differential diagnosis of sideroblastic MDS"

Chirley was diagnosed with MDS and when she received copper supplementation her MDS symptoms went away. Her posts are still available.
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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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  #4  
Old Fri Feb 5, 2016, 09:08 AM
Marlene Marlene is offline
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Good reminder

Hi Cheryl,

I'd like to add to your post by suggesting everyone get the basic nutrients checked at the very beginning in the diagnostic work up. Baselines are good to have and as you go through treatment too. Treatments will impact your nutritional status and they are not usually monitored once you are on a protocol. We've seen in some cases where nutrition was either overlooked or just not checked.

There have been studies showing that correcting low copper, low-normal B12 and h.pylori bacteria infection has reversed some cases of MDS. So it makes sense to get them checked out.

At the minimum, get your B12, folate, copper, zinc, iron and Vitamin D. Checking your MMA and homocysteine will help further identify issues with B12 and folate utilization.

Thanks for the reminder.
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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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  #5  
Old Mon Jan 9, 2017, 02:03 AM
Daisyraybell@yahoo.com Daisyraybell@yahoo.com is offline
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Cheryl

I came across Chirleys forum researching my copper deficiency. I feel my fate is the same. I am so grateful to have read her story and more importantly learn from it. My copper level was at 53 I was then was given intravenously 2mg a day of Copper Chloride for 3 days in a row. My copper level was checked 2 weeks after treatment and it went to 54. My hematologist oncologist basically said it was scientifically impossible but at the same time my bmb and bma came back and no MDS was found in the bone marrow but was found in my genes! Wth!!! Funny thing is I was referred to the hematologist because my family practice doctor thought I was exhibiting signs of MDS. I had 2 seizures in one week and now I'm being sent to a nuerologist. I have the MRI Tuesday. My health is declining significantly and meanwhile I'm waiting around for doctors. My hematologist oncologist has sent me to a assistant professor out of the university of Colorado Aurora. My first appointment is Friday. Can't wait to see what the regime is or prognosis. We're going to start looking for a stem cell transplant. In the meantime I bought some chelated copper to see if my body will absorb it. I have also found there can be a genetic mutation that can cause copper transport issues that relate to the copper deficiency. I literally became a member of this forum to find more about Chirley. I'm saddened she is no longer around!
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  #6  
Old Thu Jan 12, 2017, 08:53 PM
medicalenigma medicalenigma is offline
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Copper?

Have you looked into CBD oil in this forum as a possible alternative treatment. I to am confounding all doctors but my copper levels are normal. For me my chromosomes are normal and do not indicate MDS but i am still diagnosed with it. I am going to try CBDs because i am tired of 3 years of monthly blood transfusions and ironload. The compounds are mysterious and have mysterious implications in the body that the medical community is only starting to understand.


Quote:
Originally Posted by Daisyraybell@yahoo.com View Post
I came across Chirleys forum researching my copper deficiency. I feel my fate is the same. I am so grateful to have read her story and more importantly learn from it. My copper level was at 53 I was then was given intravenously 2mg a day of Copper Chloride for 3 days in a row. My copper level was checked 2 weeks after treatment and it went to 54. My hematologist oncologist basically said it was scientifically impossible but at the same time my bmb and bma came back and no MDS was found in the bone marrow but was found in my genes! Wth!!! Funny thing is I was referred to the hematologist because my family practice doctor thought I was exhibiting signs of MDS. I had 2 seizures in one week and now I'm being sent to a nuerologist. I have the MRI Tuesday. My health is declining significantly and meanwhile I'm waiting around for doctors. My hematologist oncologist has sent me to a assistant professor out of the university of Colorado Aurora. My first appointment is Friday. Can't wait to see what the regime is or prognosis. We're going to start looking for a stem cell transplant. In the meantime I bought some chelated copper to see if my body will absorb it. I have also found there can be a genetic mutation that can cause copper transport issues that relate to the copper deficiency. I literally became a member of this forum to find more about Chirley. I'm saddened she is no longer around!
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  #7  
Old Thu Jan 12, 2017, 09:59 PM
Daisyraybell@yahoo.com Daisyraybell@yahoo.com is offline
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Copper?/MDS/CBD Oil

Thank you for replying. I guess I spoke to soon when I posted that last post. I do in fact have MDS confirmed in my bone marrow. I see the professor at the University of Colorado tomorrow to discuss a stem cell transplant. I have started taking chelated copper to see if that helps. I have been a habitual marijuana user my whole life. I have always had health ailments and the doctors could never figure it out. So I self medicated and believe that's why I'm probably alive today. I am going to uptake my intake of cbd and looking for an alternative to be able to take it while in the hospital. The oil is a brilliant idea! I get sick off edibles and with all my allergies it's difficult to find edibles I can have. I may try Dr Willards water while taking the chelated copper to see if that helps. They will be testing my copper levels and blood again tomorrow. So I'll see where it's at now.
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Time is precious when dealing with a copper deficiency!
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  #8  
Old Thu Jun 28, 2018, 08:25 PM
Diana H Diana H is offline
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Smile Copper deficiency and MDS

My doc checked B12, folate, hepatitis... except Copper/Zinc. It seems most doctors don’t check copper.

I strongly suspect that I suffered from copper deficiency at the time of my diagnosis. I had taken Zinc supplement for more than ten years. It was OK for me to take Zinc when I ate very little animal protein. I started eating more animal protein over the years, and it finally took a toll and affect my copper absorption and my copper level. I found some very cheap cheese and ate quite a bit everyday about six months before I got sick.
My severe diarrhea (affecting nutrition absorption especially copper) in July 2017 made my MDS took a turn for the worse very quickly.
It’s only after 6 rounds of Vidaza and I was in remission that I had the energy to learn more about MDS and ran across copper deficiency. I did eat less cheese around 2nd round Vidaza when I heard Dr Dawn(from askdrdawn.com) that cancer survivors should limit dairy due to dairy is for fast growing baby cows, and fast growing favors cancer...
I stopped Zinc supplement. Eat less zinc rich food like cheese, and eat more copper rich food and hope for the best. still in remission 4 months after no MDS treatment.
I agree with Marlene and Cheryl that copper should be checked periodically. Even if Copper deficiency does not cause MDS, it could certainly make MDS worse.
When I relay my thinking to my son, he looked at me like I had two heads.
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Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.

Last edited by Diana H : Mon Jul 2, 2018 at 01:28 PM.
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  #9  
Old Sat Jun 30, 2018, 10:40 AM
Daisyraybell@yahoo.com Daisyraybell@yahoo.com is offline
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Diana,
My hematologist tested for the copper and cerluplasm once they realized I had MDS. They said it was routine. Copper deficiency can mimick MDS! The studies and journals have already proven that. I also found out I have a mutation in the Atp7b gene and the Cerluplasm gene. Which is responsible for the transportation and metabolism of copper and iron.
I urge you to urge the doctors to test your copper serum. If it comes back low have them check your Cerluplasm serum. Just a simple blood test. If they both come back low they need to do genetic copper panel test that includes Atp7a, Atp7b, Ap1S1, CP, and SLC33A1.
My transplant doctor informed me I have beaten all the odds and should have progressed into AML already. So Iím doing great! Right now anyways... I have started a Facebook group for the atp7a and atp7b genes. You can look it up if you use Facebook.
I will pray for you! I hope you have a wonderful day. Please let me know if you have any questions. Iím willing to help.
Here is an example:
https://onlinelibrary.wiley.com/doi/....1002/ccr3.207
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Time is precious when dealing with a copper deficiency!
Desiree'
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  #10  
Old Tue Jul 31, 2018, 09:45 PM
Diana H Diana H is offline
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Smile Copper

Desiree,
Thanks for your encouragement.
Hope everyone is healthy and well.
What is your copper now?
My copper is 81 (range 72-166) in July 2018. I donít know my number when I was sick in 2017. Never took copper supplement!
I try to eat high copper food. And eat very little high zinc food like Cheese nowadays.
http://nutritiondata.self.com. This is the site I gather nutrition information. Please let me know if anyone interests in the sheet I created(about copper/zinc) in food.
I will have my copper tested again if I have severe stomach upset or if my MDS symptoms return.
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Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.
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  #11  
Old Wed Aug 1, 2018, 10:09 AM
Marlene Marlene is offline
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potential treatment on the horizon

This is good news for those with copper metabolism issues. They've identified an anti-cancer drug that may help with this.

https://www.sciencedaily.com/release...0731092100.htm
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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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  #12  
Old Fri Aug 17, 2018, 01:34 PM
BrianA BrianA is offline
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This was an interesting thread for me. Prior to my diagnosis, my hematologist considered my condition was caused by a copper deficiency. I was mildly anemic (HgB 12.7) , moderately thrombocytopenic (75) and severely neutropenic (600).

My copper serum tests always came in low, but not significantly so. My values always ranged in the low 70's. I was not taking zinc suppliments.

I took copper supplements for 1 1/2 years only to notice my labs continue to worsen. I went to Moffitt Cancer Center in Tampa and one BMB later I was diagnosed. The copper was dismissed as a causal agent for my labs, although my doctor could understand why they first looked to copper as the source of my low CBC values.
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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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