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

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  #1  
Old Fri Sep 26, 2008, 03:51 AM
Chirley Chirley is offline
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Location: Logan City Australia
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Low lymphocytes

Hello,

I haven't been here for quite a while because nothing much had changed. I'm still having 5 unit blood transfusions every 5 weeks etc.

One odd thing has happened. My neutrophil count has returned to the normal range without any treatment. This is after years of being consistently (sometimes critically, low). But, at the same time my lymphocyte count (which has always been a little low) has taken a nose dive and is now consistently below 0.5 . This has been the same for the last 3 months now. I don't understand what's happening.

I asked my doctor why this would be happening and did it indicate any change in my bone marrow failure (better or worse) but he skirted the question and just mumbled something about "wait and see".

I just had a blood test yesterday and my total WCC is 2.5, neuts 1.6 (great), and lymphs 0.37. Hb is 78. (Hb falls about 10 a week so will be about 68 by transfusion time.)

Has any one on this forum had this happen to them ? I would appreciate some ideas.


I'm going for my routine transfusion at the end of next week and was hoping to be able to ask my doctor some more specific questions so he isn't as tempted to fob me off.

When I first got sick I had severe atypical pneumonia and it just got worse and worse despite treatment. Back then the doctors told me that they thought I was HIV positive because of my lack of immune response but the test came back negative. I have had another test since then and it is still negative. It was discovered after this that I had bone marrow failure. I was wondering if something similar to HIV can cause these problems. Has any one heard of anything like this ? I work in the health care industry and have had a lot of contact with HIV clients including working with their blood samples etc. I'm suspicious that there are a lot of unknown viruses out there causing all sorts of things.

Best of luck to all of you,


Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #2  
Old Fri Sep 26, 2008, 01:30 PM
Birgitta-A Birgitta-A is offline
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Low lymphocytes

Hi Chirley,
Your low lymphocytes can be due to a virus infection as you suspect . They have perhaps already looked for Cytomegalovirus, Epstein-Barr Virus, other herpesvirus, Adenovirus, JC and BK-virus ? All these are common and can give lymphopenia.
Kind regards
Birgitta-A
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  #3  
Old Fri Sep 26, 2008, 01:42 PM
Marlene Marlene is offline
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Hi Chirley,

I really don't have any ideas for you but John's lymph % usually run between 14 - 22% of is total white count. You need to look at all the various white blood cells percentages and counts. The "story" is more in the total picture versus one component.

He visited a GP once who insisted he had HIV because his Lymphs were low. This is because he did not understand SAA and his treatment. When the test came back negative, he was sure there was some other infection going on. He was conviced he had lymes. Again....negative. We ended up not going back to this guy because he just would not expand his knowleged to understand John's circumstances better. Both his Hemo's are happy with John's white count differential and prefer to see the lymph cells at lower precentage.

Marlene
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #4  
Old Tue Dec 9, 2008, 03:14 AM
Chirley Chirley is offline
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Hello,

The oddest thing has just happened with my blood tests. On Saturday I had a blood test done at work (I knew the scientist and it was a very unofficial test). The Hb was 75 (not unusual) WCC was 4.4 (incredible) neuts 2.2 (also incredible) and lymphs .6 (normal for me). I was in the process of getting a respiratory infection and had a low grade fever and sore throat. I was very happy to see that my WCC could respond to the infection.

I had a repeat blood test today through my specialist and they have just phoned with the results. Hb 85 (how does this happen without a transfusion), WCC 2.0 (what happened to 4.4) and neuts 0.8. My infection has spread to my chest but isn't very bad. I'm having low grade fevers of about 38 to 38.3

I have been booked in to have my transfusion on Thursday but I was told that the Hb was so good that I could have put it off until next week if I wanted. I decided to go ahead with my routine transfusion because I had already booked my working days with my hospital visit in mind.

I am still being amazed at how the body works. Sometimes you just can't explain the things that happen.

Time for a cool shower (it's 32 degrees here today). Between the fever, the weather and hot flushes..... I go through a lot of showers a day.

I hear that they are predicting around 34 or 35 degrees for Christmas day, and we always have the tradional Christmas lunch of baked ham, turkey, roast lamb, roast vegetables,(I love the parsnips and sweet potato) steamed pudding and custard. Thank goodness for air conditioning.

And if you read this Birgitta, my Dad was born in Nora and spent most of his childhood in Nora and Stockholm. I would love to be able to help my father relive some of his childhood memories of Christmas. He talks about dressing in some form of white dress(pyjamas?) and walking through the snow singing Santa Lucia. He said he can still remember the sound of bells on the sleighs being pulled by horses.

No such traditions in this country, it's too young and too culturally and ethnically diverse. Part of what I love about Australia.

Off to the shower.
Bye
Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #5  
Old Tue Dec 9, 2008, 06:26 AM
Birgitta-A Birgitta-A is offline
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Santa Lucia

Hi Chirley,
Yes, on Dec 13 we have the Lucia-day. Lucia was an Italian saint and they think her day has replaced the Swedish Lighth-day when the dark months end and the light months start. We (specially children) dress in long white dresses (not pyamas). Lucia is wearing a crown with candles, her ladies have glitter in their hair and the boys (men) long hats looking like Klu-klux-klan hats but with silver stars glued at the hats. There are many Lucia songs and the Lucia people go to people early in the morning, sing and give them coffee and special buns called "lussebullar" formed like a cross. Horses are not so common today so we don't hear many bells.

Every year the poor Nobel prize winners - all staying in the same big hotel - get the Lucia very early in the morning in their rooms and often think that they are dead because the room is filled with singing angels.

You know Chirley your Hb will go up if you have fever because your blood gets more concentrated when you loose fluid with body perspiration. It is not a real increase. Take care of your WBC:s! If they get real low you will need Neupogen or a similar drug.
Kind regards
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  #6  
Old Tue Dec 9, 2008, 12:10 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Birgitta-A View Post
You know Chirley your Hb will go up if you have fever because your blood gets more concentrated when you loose fluid with body perspiration. It is not a real increase.
For the same reason, your hemoglobin can go up if you had been drinking a lot of liquid before your first blood test and not before your second blood test. Extra fluid dilutes your blood, lowering your hemoglobin count in an artificial way.

I have to watch out for this effect when I donate blood. They suggest drinking lots of fluids before donating, but I have to be careful not to drink so much that my hemoglobin will measure too low. If it does, the routine HGB test mistakenly indicates that I'm anemic and therefore unqualified to donate!

So hemoglobin tests, like non-fasting cholesterol tests, can fluctuate from test to test. They may help you watch for problems but they aren't very accurate for precise diagnostics.
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Old Tue Dec 9, 2008, 07:52 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
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Thanks,

I hadn't thought about dehydration affecting the test result. It makes a lot of sense. I got into trouble from my mother for not "keeping my fluids up".

I'm almost 53, but your parents are always you're parents. I just answer "yes, Mum" "no, Mum". In reality, I love that they still care so much.

Thanks again,

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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