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  #1  
Old Wed Nov 16, 2016, 07:59 AM
kemp31 kemp31 is offline
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What triggered your investigation\diagnosis to MDS?

I have been asked to see a hematologist because my both my RBC and WBC counts have been going slightly lower each year for the past 4 years…not terribly low but not in the “normal” range. I am now slightly anemic. I would like to ask all of you what ‘started’ your investigation? Was it just routine CBC at your yearly physical? One doctor remarked, “you won’t know until someone looks at your blood under a microscope — I think he’s talking about a bone marrow biopsy. I’m just wondering if this is all necessary for me or if I just have a different ‘normal’ for blood counts. My only symptoms would be that I’m cold ALL the time and I need at the very least 8 hrs of sleep a night. (prefer 9-10) Thank you for your valuable input. I am 60.
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  #2  
Old Wed Nov 16, 2016, 10:48 AM
bailie bailie is offline
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Welcome to the forum. There are many different stories and you have good questions. For me I had a routine CBC when "out of the blue" I had a kidney stone attack. Among my counts on that CBC were Plts @ 48, RBCs @ 3.75, WBCs@ 4.7 and HGB @ 12.6.
Immediately I had two bone marrow biopsies within a week that showed three genetic mutations. I was diagnosed with MDS (RAEB-II) after the second BMB. The strange thing was that I felt totally normal. I have to credit my doctors who acted promptly to start me on Vidaza with the intention of getting a stem cell transplant as soon as counts got back to normal range.

Some people can go for years with MDS. It just depends on which of many types of MDS affect a person. For me, time was of the essence. My situation was very fluid and I didn't have any time to wait around. Realize that the more information you have, the better you can handle the situation. Don't get caught up in ignoring what is taking place. Organize your results so you can make easy comparisons to identify trends. Don't just stack up these results in a pile of papers.

We wish you the very best and feel free to ask questions.
p.s. I have had 18 bone marrow biopsies.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #3  
Old Wed Nov 16, 2016, 03:10 PM
Neil Cuadra Neil Cuadra is offline
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kemp31,

My wife was one of many patients who learned something was wrong (low blood counts) from a routine blood test at a routine physical. Looking back from that day, we realized that symptoms like fatigue had been building up, but we didn't know it was something serious.

It's true that some people live with lower-than-average blood counts, and do just fine. Your anemia seems to be giving you a few symptoms, but nothing critical. A low white count can make you more prone to infection, and some people feel "uggy" when their WBC is low, but that varies from person to person.

It's preliminary, at least based on what you've said, to guess what specifically is wrong. Maybe it's a bone marrow problem like MDS, or maybe it's a vitamin deficiency. If it was me, I'd want to learn more about what's wrong, rather than "watch and wait", because of the long-term downward trend, even though that means undergoing more tests.
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  #4  
Old Wed Nov 16, 2016, 10:33 PM
Cheryl C Cheryl C is offline
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Hi kemp31- I'm one of the MDS people that Bailie has mentioned, who is in "watch and wait" mode and has been for nearly five years now. Prior to diagnosis I had had chronic idiopathic neutropenia for many years and was being monitored 3-monthly by my GP.

I was diagnosed because I had a routine workplace medical and the workplace GP saw my pathology results and impressed upon me the need to follow up with my GP. He wasn't available, so I saw a different GP. That doctor recommended I see a haematologist with a view to having another bone marrow biopsy (it was 3 years since a previous one). MDS RAEB2 showed up in those results. Fortunately my condition improved over the next few months and I was re-diagnosed in a lower risk category.

I recommend if you have the opportunity you should have a bone marrow biopsy. As Bailie said, with MDS you can be feeling OK but actually be seriously ill. (BTW feeling the cold as well as tiredness can be side-effects of MDS.)
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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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  #5  
Old Thu Nov 17, 2016, 08:39 AM
Marlene Marlene is online now
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John had a physical 9 months prior to being diagnosed and at that time, there was no indication of any blood disorder. His counts were normal at that time. His platelets were at the low end of normal though. His counts probably dropped over six months. He was getting headaches, out of breath when climbing the stairs, retaining fluid, and his fingernails were pale. There's a good chance he has been dealing with low-normal to just below normal red cells and platelets for most of his adult life but it never caused any alarm with any of his doctors. They told him that this was just his normal.

I would suggest getting your hormones checked, like thyroid, testosterone, estrogen, etc. and find out your B12, folate, iron, copper, vitamin D and zinc status.

It's important to not take any supplements 3 -4 days prior to any testing.

Also, look at any medicines that you are on. Prescription and OTC. Statins can impact the bone marrow. Medicines for acid reflux can cause nutritional deficiencies.
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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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  #6  
Old Thu Nov 17, 2016, 09:41 AM
rich rich is offline
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I went to the doctor with balance and dizziness issues. I thought it was inner ear issues or blood pressure medicine. The doctor did a routine blood test and it was abnormal. He sent me to an oncologist which did a BMB test that showed MDS with 11% blasts. My dad died from this 17 years ago. I'm 63.
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  #7  
Old Thu Nov 17, 2016, 10:15 AM
bailie bailie is offline
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Hello Rich and welcome. What has the doctor suggested for your treatment?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #8  
Old Thu Nov 17, 2016, 11:01 AM
rich rich is offline
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Short term Dacogen. I have had 2 rounds. Long term Stem cell transplant.Just took blood test for HLA typing. Fortunately I have 4 brothers that may match.
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  #9  
Old Thu Nov 17, 2016, 11:58 AM
bailie bailie is offline
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Rich, keep in touch. This forum has been very helpful for me. Lots of good advice and answers to difficult questions. We wish you the best of outcomes.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #10  
Old Fri Nov 18, 2016, 07:19 AM
kemp31 kemp31 is offline
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counts are close to yours

Thank you so much for your reply...as mentioned by counts have been going lower each year for 4 years: WBC 3.4, RBC 3.82 HGB 11.5, and HCT 35.5 Abs Neu 1.7 PLT 228 From what I've read in these replies -- a bmb will be the only way to truly get a good picture of what might be the cause.
first hurdle, a colonoscopy next week, then the hemotologist after the 1st of year. Until that time I will continue to read on this site. such very helpful and knowledge people. Thank you again.
Quote:
Originally Posted by bailie View Post
Welcome to the forum. There are many different stories and you have good questions. For me I had a routine CBC when "out of the blue" I had a kidney stone attack. Among my counts on that CBC were Plts @ 48, RBCs @ 3.75, WBCs@ 4.7 and HGB @ 12.6.
Immediately I had two bone marrow biopsies within a week that showed three genetic mutations. I was diagnosed with MDS (RAEB-II) after the second BMB. The strange thing was that I felt totally normal. I have to credit my doctors who acted promptly to start me on Vidaza with the intention of getting a stem cell transplant as soon as counts got back to normal range.

Some people can go for years with MDS. It just depends on which of many types of MDS affect a person. For me, time was of the essence. My situation was very fluid and I didn't have any time to wait around. Realize that the more information you have, the better you can handle the situation. Don't get caught up in ignoring what is taking place. Organize your results so you can make easy comparisons to identify trends. Don't just stack up these results in a pile of papers.

We wish you the very best and feel free to ask questions.
p.s. I have had 18 bone marrow biopsies.
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  #11  
Old Fri Nov 18, 2016, 07:21 AM
kemp31 kemp31 is offline
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will explore

Thank you for the confidence to say "let's find out" instead of just saying - "it's my normal". God bless all --- healing to your wife.
Quote:
Originally Posted by Neil Cuadra View Post
kemp31,

My wife was one of many patients who learned something was wrong (low blood counts) from a routine blood test at a routine physical. Looking back from that day, we realized that symptoms like fatigue had been building up, but we didn't know it was something serious.

It's true that some people live with lower-than-average blood counts, and do just fine. Your anemia seems to be giving you a few symptoms, but nothing critical. A low white count can make you more prone to infection, and some people feel "uggy" when their WBC is low, but that varies from person to person.

It's preliminary, at least based on what you've said, to guess what specifically is wrong. Maybe it's a bone marrow problem like MDS, or maybe it's a vitamin deficiency. If it was me, I'd want to learn more about what's wrong, rather than "watch and wait", because of the long-term downward trend, even though that means undergoing more tests.
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  #12  
Old Fri Nov 18, 2016, 07:25 AM
kemp31 kemp31 is offline
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Great tips

Thank you so much for this information --- particularly the tip on discontinuing supplements prior to a blood test. Why don't the docs tell us this? I have started a list of questions gleaned from these great posts for when I do see the hematologist.

Quote:
Originally Posted by Marlene View Post
John had a physical 9 months prior to being diagnosed and at that time, there was no indication of any blood disorder. His counts were normal at that time. His platelets were at the low end of normal though. His counts probably dropped over six months. He was getting headaches, out of breath when climbing the stairs, retaining fluid, and his fingernails were pale. There's a good chance he has been dealing with low-normal to just below normal red cells and platelets for most of his adult life but it never caused any alarm with any of his doctors. They told him that this was just his normal.

I would suggest getting your hormones checked, like thyroid, testosterone, estrogen, etc. and find out your B12, folate, iron, copper, vitamin D and zinc status.

It's important to not take any supplements 3 -4 days prior to any testing.

Also, look at any medicines that you are on. Prescription and OTC. Statins can impact the bone marrow. Medicines for acid reflux can cause nutritional deficiencies.
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  #13  
Old Fri Nov 18, 2016, 05:09 PM
Hopeful Hopeful is offline
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Hi kemp31,

I wouldn't panic at this point or worry too much about things like MDS until you meet with the hematologist. If they are concerned, they will order another blood test first, before doing anything else.

Many things can cause a person to be slightly anemic. Maybe you had a virus, which can decrease counts for a few months even after you feel better.

As Neil suggested, it would be good to get things like Vitamin D, iron, and B-12 checked.

If you are getting 8-10 hours of sleep a night and still wake up feeling exhausted, that is a sign that something is wrong!
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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