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AA Aplastic anemia

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  #1  
Old Tue Mar 13, 2012, 04:36 PM
amberb amberb is offline
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bone marrow improved, blood counts not...

I had my second coarse of ATG in Jan, first was in July of 2011. Before repeating the ATG I had a bone marrow biopsy to make sure there were no malignant cells, which there weren't. But what confused me was the dr told me the cellularity of my bone marrow went from less than 20% to 80% with the first ATG. Even though the biopsy shows I'm producing blood, it's not showing in my labs. My platelets still hover in the 20s and my wbc around 1.0. Now I've had the second ATG and they are about the same. They still can't explain why my bone marrow looked relatively healthy but I'm not. They did an ultrasound of my spleen to see if it was the cause, but it was fine. Has anyone else experienced the same with the bone marrow cellularity increasing but blood counts not?
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Amber, age 24, diagnosed w/ SAA and treated w/ horse ATG 7/11, rabbit ATG 1/12, on cyclosporine. Started Desferal infusion for iron overload 7/12.
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  #2  
Old Wed Mar 14, 2012, 11:23 AM
Neil Cuadra Neil Cuadra is offline
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Amber,

The way I see it, your cellularity is essentially normal now and your bone marrow is producing immature blood cells as it should, but those cells aren't yet able to mature into fully functioning cells in your bloodstream. After only 2 months it's too soon to judge how your second ATG will affect your counts, but 80% cellularity is an excellent sign.
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  #3  
Old Wed Mar 14, 2012, 03:34 PM
Marlene Marlene is offline
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Have you recently checked your iron, B12, Folate, B6, Zinc, copper and Vit D levels? Your B12 needs to be in the mid to high normal range so find out what the exact number is.

Also, they can check your EPO levels and if they are below 500, you may benefit from a red cell growth factor.

But like Neil stated, two months is pretty early in the recovery process.
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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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  #4  
Old Wed Mar 21, 2012, 10:29 PM
Susy Susy is offline
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Amberb - YES, I have a similar experience and have been reading this forum for over a year waiting to find someone with the same experience.
My cellularity was below 10% Nov. 2010, I was needing 2 units of blood every 4 weeks and was diagnosed with SAA and went through ATG in Dec 2010. My numbers went up at first, and then they came back down to 'stable' levels.. I am still needing transfusions, but now only 2 units every 12 - 14 weeks. Doctors had me go through another BMB in July 2011 to see if maybe I had MDS...they could not find that, but found that my bone marrow had increased to 40%. I have a very small PNH clone, but there isn't anything else they have been able to come up with.
last week my hgb was 8.8, platletes 52 and wbc 2.7.
I visit the Mayo Clinic every 3 months, with a CBC in between at my local clinic...and everytime I get my CBC's done, I swear that my counts are going to be up, and of course that hasn't happen yet.
Thanks for sharing your concern and story
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Susy, age 48; diagnosed SAA Nov. 2010; treated with ATG Dec. 2010; currently on tacrolimus
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  #5  
Old Thu Mar 22, 2012, 12:12 AM
Hopeful Hopeful is offline
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Hi Susy and amberb,

The bone marrow is partly fluid and can be patchy (mosaic). This means that there will be variations between draws, and for some people, these variations can be quite drastic!

I had both a hypocellular and hypercellular marrow before diagnosis, depending on which BMB you were looking at - and some were taken only a couple weeks apart!

My expert doctor only looks at cell counts post-ATG. He doesn't advise looking at the marrow again unless things are changing for the worse. I know this view differs among doctors and some choose to more proactively look for negative changes before they show up in the blood.
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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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  #6  
Old Sat Mar 24, 2012, 10:36 AM
MelanieW MelanieW is offline
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First time posting

I have been following these forums since November 2011 when it was discovered I had pancytopenia. After four months of waiting, testing and watching my counts drop, I was diagnosed in February 2012 with moderate AA. I completed Horse ATG two weeks ago and am now on tacrolimus and a host of other RX.

In addition, I am still on medical leave from work with an expected return date of April 9th. It is frustrating because I feel fine right now other than some symptoms from tapering prednisone, but my doctor insists.

I have noticed Susy and Hopeful as your age and situations seem similar to mine. I would like to keep in touch and welcome questions and personal email from anyone.
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Melanie, age 52. Dx AA 11/11, ATG 3/12, partial response, still on tacrolimus
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  #7  
Old Sun Mar 25, 2012, 07:33 AM
Gosia.P Gosia.P is offline
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AA relapse

This is my first post.
Thank you everyone for sharing Your experiences, reading through your posts helped me understand my frustration.*
This is my 'second time around' .
My story starts in Feb. 2006; initially lots of headaches, fatigue, some bruising. At that time working full time, trying to stay in shape and our Twins being only 4 was quite a bit. Did not think that the reason behind my problems was so BIG. I decided to see my family doc, after bruising my arm. The bruise was strange in color: reddish purple for two weeks- without wisible changes in colors!!!
First CBC showed that all my blood counts way below normal! HB 7.6 W 2.6 and PL 28 and next day I saw my hematologist/ oncologist.*
It took 6 weeks; 3 BMB, countless blood tests, 1 rejected blood transfusion - due to as later was found presence of anti- Jka and anti Fyb antybodies, and my counts to drop to HB 3.5 ; W1.8 ;PL 10 to be hospitalized, and to learn that i have SAA.*
Through the the time of figuring things out I was out and about and working fullI time ! Looking at that time now - how did i do it??? No clue!!
*I was initially given up to 30% chance to make a progress. My bone marrow was at 20%. I was treated with horse *ATG and initial transfusions of platelets and red cells, things were going surprisingly well. Very slowly, yet steadily my counts were climbing!!! I was on Cyclosporine and prednisone initially *and bunch of other preventative drugs. Right after the discharge my PL were 2!!! and WBC >2, *RBC @2.
Had my PICC line for over six months and recived 50> units of red cells. Last transfusion was 11/06!!! I stayed on cyclosporine for about 2 years total, which was tapered down very slowly after over a year course of 150 mg 2x.
Things were going very well. My HB went up to 13.4; W 4.7 and PL up to 181 !!!
My initially weekly docs visits and lab work went down to semiannual.*
First drop in my labs showed in PL in mid 2011, it went down to 135 and then 128 but my HB *in 12 -13 and WBC 4>were still good.*
Until Jan 20, 2012 when my HB went down to 10.4 and PL83, and 3 weeks later another drop *HB to 9.6. , PL 66. It didn't look good *I knew that ' it's back' 😖
BMB confirmed - I relapsed. It had also been found that PNH showed up - @ 2% right now - and screening to be repeated in 6 months ; also most likely due to horse ATG, partial deliton of chromosom 13 was found.*
This time we decided not to wait and go ahead with second ATG.*
*Had my second horse ATG course 2/27/12. I'm on cyclosporin 2x 150 and still on prednisone - yuck!
*This time around about 2 weeks after the treatment I started having a lot of pain in my joints (knees, ankles, wrists, occasionally - elbows), my energy level is very low, walking limited, running out of breath after 100 yards sloooooww walk. Looks like this time I will have no choice, but really take it easy and stay home longer.
*After the first round of ATG, despite low blood count my mobility and energy level was great! I went back to work part time after 5 weeks! Now its an opposite situation, and it frustrates me.
I know pacience is the clue...
Any wisdom or words of advise???
Good luck to all of us 🎈
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Gosia/ 47; SAA 04/2006; 1 round of ATG 2006;in remission until 01/2012. ...PNH @2%, chrom 13 partial del; Second course of ATG 2/27/2012 on cyclosporine, tapering down Prednisone/ neuropathic pain syndrome??? ... Hoping for the best!!!!
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  #8  
Old Mon Mar 26, 2012, 12:03 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by MelanieW View Post
I have been following these forums since November 2011 when it was discovered I had pancytopenia. After four months of waiting, testing and watching my counts drop, I was diagnosed in February 2012 with moderate AA. I completed Horse ATG two weeks ago and am now on tacrolimus and a host of other RX.

In addition, I am still on medical leave from work with an expected return date of April 9th. It is frustrating because I feel fine right now other than some symptoms from tapering prednisone, but my doctor insists.

I have noticed Susy and Hopeful as your age and situations seem similar to mine. I would like to keep in touch and welcome questions and personal email from anyone.
Welcome MelanieW!

It's great that you are feeling better after the ATG. Your bone marrow is still very fragile and your WBC/ANC are probably low. So, I would heed your doctor's advice and avoid work for now to lessen your exposure to viruses. When you do return, remember to maintain caution around sick people, even when your WBC/ANC return to normal.

Best of luck with your recovery! Feel free to private email me if you have any questions.
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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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  #9  
Old Mon Mar 26, 2012, 12:22 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by Gosia.P View Post
This is my first post.

BMB confirmed - I relapsed. It had also been found that PNH showed up - @ 2% right now - and screening to be repeated in 6 months ; also most likely due to horse ATG, partial deliton of chromosom 13 was found.*
This time we decided not to wait and go ahead with second ATG.*
*Had my second horse ATG course 2/27/12. I'm on cyclosporin 2x 150 and still on prednisone - yuck!
*This time around about 2 weeks after the treatment I started having a lot of pain in my joints (knees, ankles, wrists, occasionally - elbows), my energy level is very low, walking limited, running out of breath after 100 yards sloooooww walk. Looks like this time I will have no choice, but really take it easy and stay home longer.
*After the first round of ATG, despite low blood count my mobility and energy level was great! I went back to work part time after 5 weeks! Now its an opposite situation, and it frustrates me.
I know pacience is the clue...
Any wisdom or words of advise???
Good luck to all of us 🎈
Hi Gosia.P,

I've heard some doctors say that are more likely to give R-ATG after failed H-ATG because it is theorized that serum sickness will be amplified with another round of H-ATG. So, perhaps you are experiencing the amplified serum sickness??? Have you been tapering the prednisone or are they keeping you on a higher dose while you have the symptoms?

Here is an article that talks about a patient similar to you that responded well to another round of ATG. (The mention of CD55/CD59 expression in the article indicates PNH.)

http://www.ncbi.nlm.nih.gov/pubmed/15609687

I hope time heals you and that you also have a good response.
__________________
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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  #10  
Old Mon Mar 26, 2012, 12:44 AM
Gosia.P Gosia.P is offline
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Hi Hopeful

Thanks for the link to the article.
My Prednisone is still at the same level, my doc is keeping it high to avoid any further problems. And yes, it is most likely highly ampified serum sickness - unfortunately... I know I should not complain too much - my ## are still pretty good, and so far I have only had one transfusion!!!! I'm having a bone scan done this week to make sure that nothing else is going on.

Please feell free to contact me @ my private e-mail.

Thanks,
Gosia
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Gosia/ 47; SAA 04/2006; 1 round of ATG 2006;in remission until 01/2012. ...PNH @2%, chrom 13 partial del; Second course of ATG 2/27/2012 on cyclosporine, tapering down Prednisone/ neuropathic pain syndrome??? ... Hoping for the best!!!!
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  #11  
Old Tue Mar 27, 2012, 03:22 PM
MelanieW MelanieW is offline
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Thank you

Thank you Hopeful for your kind wishes.

Gosia - stay positive. Remember that your wonderful response to ATG the first time is an indicator of another favorable response. It sounds like serum sickness which I think is more likely on subsequent rounds. You will get through this!

Labs again tomorrow - this is the fourth since leaving the hospital but it is the first one where I am tapering off prednisone and will find out if my last red and platelet TX have worn off.

Did anyone else get treated at Dana Farber / Brigham and Women's in Boston?
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Melanie, age 52. Dx AA 11/11, ATG 3/12, partial response, still on tacrolimus
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  #12  
Old Wed Mar 28, 2012, 02:11 AM
Gosia.P Gosia.P is offline
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Good Luck tomorrow Melanie!
Hope you will hear some good news. Can't wait to start tappering down
Prednisone - doesn't look too good for me since my pain level remains high, and Vicoden is my best friend :-)

Bone scan done, don't have the results yet. My next labs and office vist 4/2.

I finally got my copy of the BMP results as of 2/14/12:
my cellularity was described as between 10-15%. At the same time my WBC was 3.9; HBG 9.5; PL 66; RBC 2.56 HTC 27.5
To comapre the results here is 2006 - BM cellularity was around 20% (WBC 1.8 PL 10 HB 3.5 HCT 9.4)
Unfortunately I didn't have the BM test done at the time my labs were at the pick to compare.

No treating on my end.

until next time...
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Gosia/ 47; SAA 04/2006; 1 round of ATG 2006;in remission until 01/2012. ...PNH @2%, chrom 13 partial del; Second course of ATG 2/27/2012 on cyclosporine, tapering down Prednisone/ neuropathic pain syndrome??? ... Hoping for the best!!!!
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