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    Brett Lavoy

    Question to anyone out their my husband 59 went for normal routine physical, all blood counts were low at this point was referred to a Hematologist/Oncologist for a bone marrow biopsy. The doctor
    could not come to a diagnosis was told to quit drinking beer had lab done every two weeks for two months no change. My husband was referred out to another Hematologist/Oncologist with more years on his belt. So his lab work been like this no changes could have been longer had not felt good for a year. He saw the new specialist who had has finger pricked looked under microscope saw abnormality of some sort now going back for
    second bone marrow biopsy by this specialist. Please give some feedback on what to ask or be aware off for results. Any one been in this same situation?

    Pat Lawson

    My husband ended up in the hospital late October. He had trouble breathing,weakness, swollen ankles and feet and pale skin. He is 64 and always very active. By the time I talked him into going to the hospital they discovered his red blood count was only 4.7 and it should have been 13. His white blood count and platelets were low also. They had to give him 4 bags of blood. He had a bone marrow biopsy and was diagnosed with mds with excess blasts. We are currently going through screenings at our local hospital and at John’s Hopkins to see if he is a candidate for a clinical trial. He has only been out of the hospital 2 weeks and he already has to go back tomorrow for another transfusion. In hind sight my husband looks back now saying he has been feeling tired since last spring. See if any of the doctors or centers mentioned on this website are near you and if so go to them. Please don’t let him wait. The sooner you find out what is going on with him the longer you may have him in your life.
    God bless you and your husband, Pat Lawson

    Brett Lavoy

    Question pat Lawson what was your husbands neut number? this was raising the flag with my husbands was 0.5 and platelet count from 113 down to 111. white blood count 3.4 and red blood count 3.55 trying to figure this all out. And on top of that he had low energy for a year now. They are gearing toward MDS but our HMO did not get referral over for his second bone marrow biopsy to be done today by this second doctor that was referred for us to see. We are both getting frustrated over all this not getting the answers. Would like to get some more feed back from anybody else who had this problem and is the numbers above really bad or we’re being told could get worse due to
    the bone marrow not functioning like it should for some reason. I was numb when they sent a manual home with my
    husband and I to read about stem cell and other options for mds.

    Allan Romriell

    I am 65 yr old, male, diagnosed with MDS in june 2017 after routine physical found my platelets were 75000, hemoglobin was 11 and white counts were slightly low. I was sent to Hemo/oncologist who ordered bone marrow biopsy and confirmed MDS-RS a low risk variation. I have been on watch and wait with checkups every 3 months since then. My main issue is low hemoglobin and Red blood counts but my platelets have bounced around as well. My last check up last month my numbers had improved to Hemoglobin 12, red cells 3.91 white cells over 6 (they mostly been good but were even higher this time) and platelets 157000 which is highest they have been since diagnosis. All your husbands numbers are low but with exception of the white counts my numbers have all been as low as his or lower at one time or another the last year and a half. I mainly feel tired and get winded easily with exertion. What I have learned of MDS this last year plus is that it is very much and individual thing and everyone reacts differently to the illness and treatment. I don’t know if this helps you any or not, I hope they get you some answers as that is frustrating. My oncologist is very happy right now with my case and says I may go several years without need of treatment, but I know it is an unknown. I wish you both the best, it was pretty scary when I was diagnosed and started reading up on it, but as I say mine seems to be progressing slowly so my fears are lessened right now. There is also a lot of research going on right now with some progress on other potential treatments so that is encouraging as well. Let me know if you have other questions.

    Brett Lavoy

    NEUT% MD 14.0 % 34.0 – 73.5 % L
    NEUT# MD 0.5 /uL 1.4 – 6.5 /uL LL
    Result was repeated and verified.
    Critical result for NEUT# was called to Dr. Raheem on 10/6/2018 5:57 PM
    by Airhart, Joshua and result was read back and confirmed. (NEUT# MD)
    LYMPH% MD 58.0 % 20.5 – 51.1 % H
    LYMPH# MD 2.1 /uL 1.2 – 3.4 /uL
    MONO% MD 25.0 % 4.3 – 12.9 % H
    MONO# MD 0.8 /uL 0.2 – 0.9 /uL
    ATYPICAL LYMPH 3.00 0.00 – 4.00
    General Information
    10/06/2018 8:03 AM

    10/06/2018 5:57 PM

    WHITE BLOOD CELL COU 3.4 10*3/uL 4.0 – 10.0 10*3/uL L
    RED BLOOD CELL COUNT 3.55 10*6/uL 3.90 – 5.70 10*6/uL L
    HEMOGLOBIN 13.6 g/dL 13.7 – 17.5 g/dL L
    HEMATOCRIT 39.5 % 40.0 – 51.0 % L
    MEAN CORPUSCULAR VOL 111.3 fL 79.0 – 95.0 fL H
    MEAN CORPUSCULAR HGB 38.3 pg 27.0 – 34.0 pg H
    PLATELET COUNT 111 10*3/uL 150 – 400 10*3/uL L
    MEAN PLATELET VOLUME 11.5 fL 8.6 – 12.4 fL
    RED CELL DISTRIBUTIO 13.6 % 11.3 – 14.8 %
    General I

    Result Status:
    Final result

    This test result has been released by an automatic process.
    Component Result Flags
    A = Abnormal C = Critical H = High L = Low

    Pat Lawson

    The following are my husband’s numbers before his transfusion today.
    White blood count 1.9
    Red blood count 1.98
    Hemoglobin 6.4 this is what was down to 4.7 when I got home to the hospital
    Hematocrit 19.6
    Platelets 109
    I’m not sure what the next # is you were asking about if it’s the neutrophils relative it’s 36.6

    Hope this helps,

    Brett Lavoy

    Thank you Allan that gives me some relief and hope that this may turn out to be the same for my husband some
    have called it the new norm and if stay the same and not get worse and get better at times be ok with that.
    but were you told to be careful with getting an infection or getting sick that could it be dangerous. But the diagnosis of what stage or ? his bone marrow biopsy second one to be done is on Tuesday since the referral
    got all messed up to have done was to be today.

    Amy Clark

    Hi Brett and Wife,
    I am sorry you are going through all of this. It IS a ton of information to try and assimilate in a short period of time. Be kind to each other while you figure this “new normal” out. And after.

    The main numbers on your regular blood labs to look at are the ANC (Absolute Neutrophil Count or Neut # on your list), the platelet count and the HGB (Hemoglobin on your list). On your bone marrow biopsy they look at the blast count as the key marker for progression of MDS. Different hospitals have different thresholds for transfusions of platelets and red blood cells. Ours is once you drop < or = to 12,500 platelets or a HGB – hemoglobin of < or = to 9.0. The ANC is considered neutropenia under 1.5 at the hospital where we are. That means your husband is at greater risk for infections as you know. His is quite low at .5 and they may put him on prophylactic antibiotics or antifungals or antivirals for his protection. Or they may not. It is up to the doctor and their protocols. The low ANC is why it is so important to watch for a fever; he has a very weak immune system available to fight against germs.

    Hang in there. The most important thing you can do at this point is probably find a doctor you are confident about. The Centers for Excellence have been evaluated by someone with much more experience than I, and even though I liked our hematologist, the ones we are seeing know are much more knowledgeable at the CofE near us. Good luck and God bless you. Amy

    Allan Romriell

    As my main problem is low red blood cells I have not been given any cautions on infections other than the less illness the better just on general terms. My white counts have always been normal or very close so infection is not considered a problem as I have enough white cells to fight it, at least at this time. I have been cautioned to call if I experience bleeding and bruising due to platelets being quite low at times and if I struggle to breathe or have heart pain or related issues due to the low hemoglobin not providing enough oxygen. Other than that I have been told to continue living as close to normal as I can. Good luck with the next biopsy, hope they can give your some definitive news.

    Brett Lavoy

    Hi Allan thank you for the feedback my husband and I appreciate it very much.

    Brett Lavoy

    Thank you everyone for the responses to help out with being new to all this for my husband, question is their a link to using Advair Diskus that may have something in it to cause some abnormalities was reading a little bit
    about it on the web site can cause immunosuppression and change in lab blood values on white blood cells as well bone thinning. I wonder if should bring this question up with the doctor but would have thought his primary would be alert on that but maybe cause my husband been on it for several years but he never had a complete lab work order every year either.

    Allan Romriell

    I would talk about anything you may think important, not all doctors think alike and what seems important to one may not be to another. My son has gone through cancer treatments including surgery and has had many frustrations with some of the doctors he has dealt with, so I would certainly get as many opinions as you can. Can’t hurt. Hope things go well for you both.

    Bob Cook

    Brett – I’m similar, and also in the group “young” for this disease (56). First time I’ve been told I’m “too young” for something in a while. Routine blood-work caught the low WBC count a year ago. Initially they ran every blood test, every autoimmune test etc and a bone marrow biopsy. Never had any symptoms. Still don’t although I’m tired more easily now. But I’m very active with a large family with kids from 11-24y.o., so I’ve been tired for a long time. But seriously, the last few months by 900pm I’m done. but otherwise all is good. Doc runs blood-work every month, sees me quarterly and until something changes that’s the routine. Not sure what abnormality your husband’s bone marrow biopsy showed… other than the MDS related abnormalities…. my biopsy was done to determine if I was producing healthy WBCs and they were dying too soon or if I wasn’t producing them at all (which is the case…well they are not maturing to the point of being useful in the immune system. I’m new to all this so my lingo may not be exact , so anyone reading this please feel free to correct the terminology. Fortunately I’m otherwise healthy, the “never get sick” type, so that’s a plus. I’m interested in your husbands case as my doc tells me it’s a lot harder to provide me a prognosis because of my young age as there’s not that much case history so not as predictable as a diagnosis at 65+. So – I think I’m in a “similar situation” ?? Glad to share whatever I can with you. Bob

    • This reply was modified 1 year, 4 months ago by Bob Cook.
    Brett Lavoy

    Hi Bob: Thank you for sharing with my husband and I what you have been going thru, I think it would be good news if they call back this week after my husband had this second biopsy done saying they can’t find anything wrong that would be great I think. I was wondering did you have bruising of the skin easy, and easy bleeding from a cut.
    what was your neut numbers and platelet numbers as well low white blood count numbers. The neut number is what was
    raising a flag. I was relieved when the first oncologist/hematologist said he could rule out leukemia and other cancers from the first bone marrow and then still he was not sure if he could rule out the myelodysplasia syndrome which confuses me that when gets worse can turn in to leukemia and maybe we are reading to much into this not sure. And then our primary doctor after seeing for follow up stated if he never had routine blood work up with everything included he would have not known and pretty much would go about his daily routing but for a year had been run down no energy with the 2017 flu around Christmas took him down and then never the same since then. What did your doctor diagnose you with?

    Bob Cook

    Brett Over the year, it hasn’t changed much WBC 1.5-1.9, platelet 115-150, Abs Nuets 420-450. Same here, ruled out Leukemia, leaving a dozen other blood cancers as most likely diagnosis. I’m still lacking some definitive “flags” to confirm MDS but they’re sure that’s what it is. No hard and fast diagnosis in this arena apparently and we don’t have a telethon yet…..

    My regular Doc does annual blood-work to confirm I’m ok with my thyroid Rx and Staten Rx, etc. Called me in becasue WBC was 1.7. He actually didn’t believe the labs and retested , thought no way numbers could be that bad and I look and feel so good. So he didn’t diagnose anything, I felt (feel) great. Soon as retest confirmed he sent me to MD Anderson to Oncology Hematologist. They are also surprised my health hasn’t deteriorated, but I don’t get sick, don’t get infections, so I could have gone a long time without detection if not for routine blood work. Told me to avoid buffets and fast food (food poisoning is a major issue apparently) and avoid kids. Well I travel a lot, have 4 kids, a scout leader in 2 different troops and a leader in my daughters’ Indian Princess Group….so I’m living against doctors orders becasue I’m surrounded by kids and live on fast food….. Like I said, lately I feel great most of the day, but run out of steam about 900pm and it’s a sudden drop off. Find myself napping more on weekends when I can. Is it MDS or age ??? My Dad is 84 and has napped every day since I was born …..

    Some ethnic groups are predisposed to MDS (African and Hispanic I believe he told me – something to do with antibodies inherited from ancestors exposed to malaria – iirc) and can explain it and my oncologist seemed like that made it less of an issue if it applied to me as it would be “normal”. But I told him I’ve done genealogy research for over 25 years, traced my relatives to England & Ireland in the 1500’s…I’m without a doubt the whitest patient he ever had. So if your husband has any significant african/hispanic heritage let your doctor know. They tested genetics as part of my bone marrow biopsy, I guess he didn’t trust my account.

    For now I wait till my numbers show the other “flags” to confirm MDS as each blood cancer would have a slightly different treatment, and wait on numbers to get bad enough to require treatment…could be several years…kind of like having an anvil held over your head, but so be it. I can hear the anxiousness in your words… I spent several months in panic mode but the more I learn the more at peace I get. I just found this website Tuesday, so I’m happy to share and learn what others are experiencing too. Feel free to contact me anytime and please keep us updated on your side too.

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