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  #1  
Old Sun Oct 18, 2015, 03:11 AM
Pennydog Pennydog is offline
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Posts: 6
Question Just being tested.

Hi everyone, I have just had my first bone marrow biopsy. It was not as bad as I thought.
I feel fit and healthy, apart from a little tired and dizzy if I stand up fast.
My doctor says I have platelets levels which are dropping, now at 80, and I am not making enough rbc even though iron levels ok.
Wbc fine, and all the other blood work is normal, apart from they said I have really tiny amounts of a protein, which in large amounts indicates cancer.
The haematologist won't tell me much more and I have 5 weeks until the results are in.
The waiting is not fun is it.
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  #2  
Old Sun Oct 18, 2015, 11:21 AM
bailie bailie is offline
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Pennydog, we hope you have a good diagnosis when you get it back. I am surprised that they said five weeks for results. I have had 14 BMBs and have always got most results back within a week. Other results back within 2-3 weeks.

Look for the "blast percentage" in your results. That is very important.
__________________
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 Sun Oct 18, 2015, 12:15 PM
Pennydog Pennydog is offline
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yes I am not convinced that I quite trust the doctor. The nurse told me the slides were ready very quickly and it was just the genetics which was sent off which would take longer. I don't think they had an appointment any sooner. I asked if I could be given the results sooner after the biopsy by phoning , and the doctor said no. He seemed quite irritated even having the conversation with me.
Is it possible to have a platelet level of 80, slightly low RBC level (haemoglobin fine), WBC borderline upper limit of normal and there to be nothing serious wrong? All my cells look normal apparently. Don't feel ill, maybe a little tired.
Just grasping at straws.
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  #4  
Old Sun Oct 18, 2015, 12:57 PM
bailie bailie is offline
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It is difficult to answer your questions. You will soon find out that there are many different paths in MDS and often the problem is not MDS. I had low platelets (48) when I was first diagnosed and all other counts were fine. I was feeling great at the time. It will be the blast count that is significant. Your doctor sounds like a problem. There is no reason to be that "short" with answers. Naturally, he/she cannot guess at the results, but the doctor should be more forthcoming.
__________________
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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  #5  
Old Sun Oct 18, 2015, 02:01 PM
Pennydog Pennydog is offline
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Thanks for your response. It is great having someone to talk to about this. I wish I knew enough to be of help to someone else on this forum.
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  #6  
Old Mon Oct 19, 2015, 02:45 AM
Amz904 Amz904 is offline
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Hi pennydog, hopefully everything turns out fine for you! But I'm surprised they're making you wait 5 weeks for your results. Since the most basic results usually come back within a few days at most and those can really help in determining if there is a greater issue at hand.

In my case I was diagnosed with Aplastic Anemia in December 2013 and the first things to fall for me were my platelets.

Luckily for me I was already getting frequent blood tests (I was recovering from a random case of viral hepatitis.)

My platelet counts were as follows:
Nov 7: 125
Not 8: 123
Nov 10: 101
Nov 12: 96
Nov 18: 46
Nov 22: 24 (at this time I noticed petechiae on my arms and went to the ER where I got my first platelet transfusion.)

During this time my WBC, RBC, and hemoglobin were all normal. Soon after my first platelet transfusion the rest of my blood counts started to decline.

I had my bone marrow biopsy the first week of December and was immediately diagnosed with Aplastic Anemia either the same day or the next day.

I suggest getting another CBC blood test as soon as possible to make sure your platelets don't continue to fall. If you're unable to go in for blood work soon I definitely recommend to keep a look out for petechiae on your body, easily bruising, and nose bleeds which are signs of low platelets.

Good luck with everything, hopefully you're just worrying for no reason but it's always better to be on the safe side!
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  #7  
Old Mon Oct 19, 2015, 04:06 AM
Shazza Shazza is offline
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Hi Pennydog,
It doesn't sound like you're being treated very well by your doctor.
Where are you based?
In the UK there's a strategy in place to ensure suspected cancer patients are seen & treated within certain time limits.
I don't think it would be unreasonable of you to phone the doctors office & chase them up for some answers.
__________________
Neutrophils fluctuating between 0.8 & 1.7 since 2000.
Hypoplastic bone marrow (10-15% cellularity).
No cytogenetic abnormalities.
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  #8  
Old Mon Oct 19, 2015, 12:33 PM
Hopeful Hopeful is offline
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Hi Pennydog,

Waiting is the hardest part! I also had to wait a month for my cytogenetics the first time. Some doctors don't like to speculate about what it could be, especially since a patient's tendency is to immediately google the worst thing that they hear!

My guess is that there are no smoking guns at this point. Your platelets are dropping, but they aren't that bad. Your WBCs are normal, which is great. Sometimes you will see low platelets/RBCs for months after a bad virus. So they really need the cytogenetics to make a diagnosis.

Try not to panic, and try not to google/speculate at this point - easier said than done
__________________
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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  #9  
Old Mon Oct 19, 2015, 12:48 PM
Pennydog Pennydog is offline
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What you are saying fits with what the nurse told me about the slides being looked at almost straight away. I am in England by the way.
I tried to look at it as a good sign, they wouldn't be leaving me that long if they thought it was awful, and I don't feel ill.
I couldn't understand the lymphoma bit, as I have no swollen glands.
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  #10  
Old Mon Nov 2, 2015, 05:11 PM
Pennydog Pennydog is offline
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It has been nearly 3 weeks since my bmb and I have not heard anything.my appointment is not for another 3 weeks for the results but I was told they would call if it was needing urgent treatement. what info do you think they will have from the test by now?
I can't sleep for the worry.
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  #11  
Old Mon Nov 2, 2015, 07:05 PM
bailie bailie is offline
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The tests come back at different times. By now they should have the important "blast count", "Hematopathology report" and "Genetrails AML/MDS Gene Mutation Panel". There are many different tests that they can make from a BMB. I would not hesitate to call to see if any of the tests have been made. They should be completed by now.
__________________
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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  #12  
Old Sun Nov 15, 2015, 01:23 PM
Pennydog Pennydog is offline
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Join Date: Oct 2015
Posts: 6
Results thursday

Getting my results of bmb after 6 long weeks of waiting. Feel quite tired and bruising easily, some red dots on legs linked to low platelet count.
Generally not feeling ill. Have been told it could be low grade lymphoma or MDS. Hope there is a third possibility!
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  #13  
Old Mon Nov 16, 2015, 03:06 AM
Shazza Shazza is offline
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Join Date: Jul 2013
Location: United Kingdom
Posts: 22
Thursday

Hope it goes well for you on Thursday. Let us all know how it goes.
__________________
Neutrophils fluctuating between 0.8 & 1.7 since 2000.
Hypoplastic bone marrow (10-15% cellularity).
No cytogenetic abnormalities.
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  #14  
Old Mon Nov 16, 2015, 11:41 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 800
Yes - all the very best for Thursday Pennydog. I'll be looking for a post from you afterwards!
__________________
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 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #15  
Old Thu Jan 12, 2017, 08:49 PM
medicalenigma medicalenigma is offline
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Join Date: Jan 2017
Location: Laguna Woods, CA
Posts: 14
Promacta

AMZ904 have you checked into the medication Promacta? My platelets dropped to 6000 in ICU and i am alive today only because of it. A miracle for some of us.


Quote:
Originally Posted by Amz904 View Post
Hi pennydog, hopefully everything turns out fine for you! But I'm surprised they're making you wait 5 weeks for your results. Since the most basic results usually come back within a few days at most and those can really help in determining if there is a greater issue at hand.

In my case I was diagnosed with Aplastic Anemia in December 2013 and the first things to fall for me were my platelets.

Luckily for me I was already getting frequent blood tests (I was recovering from a random case of viral hepatitis.)

My platelet counts were as follows:
Nov 7: 125
Not 8: 123
Nov 10: 101
Nov 12: 96
Nov 18: 46
Nov 22: 24 (at this time I noticed petechiae on my arms and went to the ER where I got my first platelet transfusion.)

During this time my WBC, RBC, and hemoglobin were all normal. Soon after my first platelet transfusion the rest of my blood counts started to decline.

I had my bone marrow biopsy the first week of December and was immediately diagnosed with Aplastic Anemia either the same day or the next day.

I suggest getting another CBC blood test as soon as possible to make sure your platelets don't continue to fall. If you're unable to go in for blood work soon I definitely recommend to keep a look out for petechiae on your body, easily bruising, and nose bleeds which are signs of low platelets.

Good luck with everything, hopefully you're just worrying for no reason but it's always better to be on the safe side!
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