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Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

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  #1  
Old Tue Dec 12, 2017, 02:06 AM
Naive Naive is offline
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Blood film

Hi, I recently received a copy of my blood results with a blood film report.

I understand most of it but although I know what these terms are, I donít know their significance.

Hb 79
Hct 0.27
Rcc 3.6
Mcv 77
Mch 22
Mchc 287
Plats 150 only normal count
Neuts 1.2
Lymphs 0.6

Thatís ok. These are as good or better than normal.

However the report says dimorphic (yep, know what that means) normocytic and normochromic (know what that means) red cell fragments present, nucleated red blood cells present, platelet anisocytosis with large and giant platelets.

I donít know if the last part of the report is significant. Iíve also noted a couple of my biochemistry results are a bit off too. My ca, protein are low and couple of my liver enzymes high. The ALP has always been a little raised but itís steadily climbing each test and now my AST increased on the last couple of tests as well.

Iíd be grateful if anyone has insight as I donít have any appt with the haematologist for months and my Physician doesnít seem to check my blood results (except the hb for transfusion purposes).

Thank you.

Carol.
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  #2  
Old Thu Dec 14, 2017, 05:17 PM
Naive Naive is offline
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Iíve made the mistake of Googling the results.

Iíve been told my BMB (done a year or so ago) showed some dysplasia but not enough for a diagnosis of MDS. I also had a chromosome deletion but it wasnít one usually associated with MDS. But now that Iíve seen the blood film report and I have these new changes Iím wondering if my disease is changing or progressing.

The nrbcs and the large and giant platelets seem to be an indicator of MDS or malignancy. The red cell fragments and raised liver function tests can show haemolysis.

I feel a little disappointed that my Doctor doesnít seem to have even looked at my results in detail for the last few months. The only result he ever mentioned was the Hb and the neuts (when they were a lot lower). I have no follow up appts with the haematologist scheduled and the Physician doesnít seem to want to address any issues other than the anaemia and blood transfusions.

Would it be appropriate for me to try to contact the haemotologist and ask him to review and explain my test results? Or am I being overly concerned about nothing much?

I would appreciate some advice.

Carol
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  #3  
Old Sun Dec 17, 2017, 12:33 AM
Hopeful Hopeful is offline
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Hi Carol,

I think it would definitely be appropriate for you ask your doctor to explain your results and the possible causes. I don't know the significance of the blood dysplasia that you have listed or if it is indicative of MDS or something else.

Sorry I can't be of more help! I don't want you to think that no one is listening out here

You need to understand the cause so that you can hopefully get off the transfusions.
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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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  #4  
Old Mon Dec 18, 2017, 12:08 AM
Naive Naive is offline
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Thank you Hopeful. I still donít know if my results mean anything has changed. I rang the haematologists office and asked if he could look at my recent results and let me know if I needed to do anything. I received a phone call back from the secretary to say the haem had booked an appointment for me to see him on Jan 14.

Iím assuming he wants to discuss the results but it could be just a routine visit...I donít know.

My mother passed away 2 months ago and Iím trying to care for my father and while heís still physically fit for a 90yo, he is grieving terribly and I feel Iím not able to be as supportive as I should be because Iím so incredibly weary. The tiredness seems to be so deep itís inside my bones. Itís hard to describe.

I just need to remain patient and do my best to eat well and stay well until I get some answers.

Carol.
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  #5  
Old Mon Mar 5, 2018, 05:05 AM
Naive Naive is offline
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Iíve got another question. I was told today that Iíve got heart failure. This was because of the result of a blood test. I need further tests to see if the EF is normal or not to see if itís treatable. My blood pressure is very low.

Okay, so is it possible that heart failure can contribute to haemolysis. Iíve got a raised LDH and ALP.

Iím in the middle of my 3rd blood transfusion in 4 weeks. Thatís a massive change in transfusion requirement.

Iíve also had a few falls lately and currently on bed rest (and these nurses are strict!) for torn ligaments in my foot and ankle. The week before I fell and twisted my other ankle and the week before that I fell and injured my wrist. Iím feeling very debilitated. Iíve spent 4 of the last 5 weeks in hospital and feeling very pessimistic about my future.

The heart failure news was a bit of a shock...certainly had never crossed my mind.

Iíve read that valve disease and regurgitation can cause haemolysis but as far as I know I donít have valve disease.

I donít know if I even expect an answer. Kind of writing out my thoughts as a therapy.
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  #6  
Old Mon Mar 5, 2018, 10:02 PM
Cheryl C Cheryl C is offline
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Hi Carol. I'm so sorry to hear your latest news. You have obviously been going through a very tough time, and still are.

I'm sorry I can't offer any answers to your medical worries, except to say that sometimes haemolysis occurs simply because your blood hasn't been dealt with quickly after it's been taken by pathology.

I just want to send you my thoughts and prayers.

Keep posting!
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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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  #7  
Old Tue Mar 6, 2018, 09:02 AM
JoMac53 JoMac53 is offline
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Carol, my condolences on the death of your mother and I hope your father is doing better. I'm sorry I have nothing I can say that would be helpful regarding your blood work.

I've recently (a few weeks) developed low blood pressure myself and wonder about heart failure but I don't find much online connecting the two. How low has yours gone?

Mine is fairly consistent now in the high-80 over high-40 range (example 87/48) but my oncologist doesn't seem concerned other than to ask what my medical doctor is doing about it. I see medical doc next month but whenever I'm at the infusion clinic it reads higher so I don't think my medical doc will even believe me. (Home monitor is working correctly, my husband gets normal-to-slightly high readings.) I also only occasionally have other symptoms like fast heart rate or weakness or dizziness. I've not fallen but having been a caregiver to several people with brain injuries from falls I'm extremely careful about that.
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  #8  
Old Tue Mar 6, 2018, 10:29 PM
Naive Naive is offline
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Hello Jo. I didnít even realise low BP could be associated with heart failure. Everyone always talks about high blood pressure.

My BP is in the low 90s at the most, usually sits in the mid/low 80s and sometimes drops to the mid 70s. The bottom reading can be anywhere between 55 down to 38. This is documented on my obs chart and has been low for at least a year. I have fainted at home when Iím sure itís dropped even lower.

My pulse is between 55 and down to 45.

The test my doc did was a BNP I think. Apparently it not only diagnoses heart failure but is used for monitoring the progression. He said it could be caused by chronic anaemia and muscle weakness. Now Iím just waiting to see if the echo shows if the ejection fraction is normal or low. Apparently normal EF is bad because thereís no treatment available.

I get to go home tomorrow and Iíll get a call to let me know if I need any further tests or treatment so it canít be too bad.

Just another medical problem to add to the list.

It seems to be easy to find out if you have heart failure. Iíd ask your Doctor for the BNP blood test.

Good luck.

Carol.
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  #9  
Old Wed Mar 7, 2018, 05:08 AM
lisa3112 lisa3112 is offline
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Hi carol,
You should ask about heart failure nurses. I am a cardiac nurse. Its a good idea to weigh yourself every day to see if you are fluid overloaded. If you put on weight it is an indication you may need diuretics. Yes, cardiac failure is scary, but you can manage it. I hope your echo is OK. Heart failure can cause elevated liver enzymes (ALT) because of congestion.
Please post if you have any questions about heart failure, I can try and answer.
Lisa
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #10  
Old Wed Mar 7, 2018, 05:12 AM
lisa3112 lisa3112 is offline
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Also I just read you mum passed away, I'm so sorry. There is a condition called takusubo syndrome, which essentially causes heart failure after extreme stress. Did you ever have chest pain? Ask your Dr about this too. I have seen a number of women suffer from this.

Good luck.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #11  
Old Thu May 3, 2018, 12:37 AM
Naive Naive is offline
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Hello, I thought Iíd post an update.

For the first time in over two years my hemoglobin has risen by itself without a blood transfusion. It went from 88 to 99 in two weeks. Also my neutrophils are above 1.5 for the first time since I can remember. Sitting at 2.4...were 1.1 two weeks ago.

My doctor doesnít really believe the results and thinks there was a mistake but Iím over the moon.

The only downer is that my liver isnít very happy with abnormal enzymes..not too bad though.

I have a cancer centre appointment tomorrow and for the first time in a long time Iím looking forward to it.

The ONLY thing Iíve been doing differently is changing my diet to include a lot of fruit and vegetables. I normally eat well anyway but Iím going out of my way to snack on raw fruits and vegies even when Iím not hungry. Maybe itís a co incidence and maybe the blood test result is an anomaly but Iím taking it and runnng with it. Nice to have some good news for a change.

Oh, and the heart failure...itís only mild, so that too, is not so bad. I recently researched my chromosome abnormality and saw it has been linked to poor prognosis myeloid malignancies..so given that criteria I think Iím doing better than expected. Long may it continue.

Even my dog can tell Iím relieved.
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  #12  
Old Thu May 3, 2018, 10:42 AM
Neil Cuadra Neil Cuadra is offline
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Carol,

Congratulations on your rising counts! I've got my fingers crossed that they continue in that direction.

I see that your dog got dressed up for the photo. A happy master makes for a happy pet.
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  #13  
Old Thu May 3, 2018, 10:31 PM
Naive Naive is offline
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Thank you Neil. Iíve just returned from seeing the hematologist. He was very happy with my results. He did say that he has never seen anyone go into remission with MDS...it just doesnít happen. So, the underlying MDS is still there but just accept any improvements and hope it lasts.

He also confirmed that my chromosome deletion has recently been linked with myeloid malignancies. He said new karyotype/chromosome analysis is evolving and becoming more targeted and they can detect smaller gene deletions now. He didnít think a new BMB was warranted to check the cytogenetics at this stage.

My dogs name is Lily and it was her first time wearing PJs because she had just been to the groomers and been clipped. It was a bit cooler last night and I thought sheíd be cold. The PJs only lasted about half an hour before she managed to escape them.
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  #14  
Old Fri May 4, 2018, 08:30 AM
Sally C Sally C is offline
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Hi Carol,
I have to happily disagree with your doctor. My husband's MDS started showing up in late 2008. They tried Campath and Cyclosporin to no avail and he needed over 125 blood/platelet transfusions. There was a time when his platelets were 4,000 and his neutrophils hit 0.0. He was the first MDS patient in a Promacta (Eltrombopag) clinical trial at The National Institutes of Health in Bethesda, Md. He started Promacta in March of 2011 and stopped taking the drug in the summer of 2012. He has been in remission ever since - now going on his 7th year with no MDS meds since Promacta. His whites are normal, reds hover around normal, and platelets stay around 100,000.
I wish you the best - and hope to see you prove your doctor wrong.
Take good care,
Sally
P.S. Adorable dog!

Last edited by Sally C : Fri May 4, 2018 at 11:42 AM.
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  #15  
Old Fri May 4, 2018, 08:35 PM
Naive Naive is offline
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Thank you Sally. I couldnít believe the word ďremissionĒ came out of his mouth anyway even though it was to deny itís possible. It means he was thinking it!

I know one lot of improved results is far too early to assume thereís been a change for the better but it sure beats bad news. My improved diet is easy to do and I really enjoy the food Iím eating now so Iíll keep going with it in case it has had some impact. (Iíll still have pizza etc if I feel like it though, canít see the point of denying myself). The bonus is that Iíve also gained a couple of kilograms and my GP isnít nagging me about being too thin any more.

Your husbands story is inspirational and it gives hope to a lot of us. I truly believe that we donít have to be one of the statistics with ďaverage life expectanciesĒ depending on the scoring system. If I listened to the stats, I should be dead by now.

I agree Lily is adorable but Iím biased. She is also, funny, mad, energetic, weird and sometimes...incredibly naughty. When I decided to get a dog I didnít realise she was going to cost me three times as much for her haircut every month than mine costs..puppies should come with a warning label. Beware...will melt your heart and your wallet. She has invaded my heart.
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  #16  
Old Fri May 4, 2018, 09:18 PM
Sally C Sally C is offline
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Hi Carol,
Trends have to start somewhere - just keep the Faith - and eat the pizza - with lots of cheese! Frame of mind is really important. And I agree about statistics. That is all they are. Don wouldn't be here either.
We have a Jack Russell "terrorist" - Daisy Mae (we're southerners). What would we do without them?
Please keep us posted and take good care,
Sally
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  #17  
Old Mon May 14, 2018, 11:39 PM
Naive Naive is offline
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Well...the last test was an anomaly. They are back to low hemoglobin and low neutrophils..Iím feeling a bit deflated..Iíd had such hopes. Back to blood transfusions next week. Still, itís been nice to have a couple of weeks break from them.
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