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  #51  
Old Sun Jul 3, 2016, 01:22 AM
KatailS KatailS is offline
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Quote:
Originally Posted by bailie View Post
You can include me into the "brain fog" group. I just mailed large envelope to my daughter (w/ extra stamps) and forgot to put the contents into the envelope.
Been there, done that!
Welcome to the Brain Fog Club, bailie!
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Kathie - 52 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone, monitor bloodwork every three months
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  #52  
Old Sun Jul 3, 2016, 06:33 PM
David M David M is offline
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Answers to your Questions...

Kathie,

I am currently taking some iron (65 mg daily)... not much, I guess. Also I am taking a Super-B Complex supplement -- it has 250 mg of B12 in it, among other things -- but this is something I just started doing on my own.

I haven't really experienced the "unable to take a deep breath" phenomenon you described. However, in the past (back in 1996) I had some lung issues... I had about a 6 month bout of an "autoimmune" type disease called sarcoidosis, and during this time, I would have coughing fits that seemed to go on forever -- also fevers, aches, swellings in ankles, etc. But this was an "acute" attack apparently, and in a few months it went away never to return. Unless, of course, it is now the cause of my pancytopenia somehow? Unlikely, but... who knows?

I wonder if having low hemoglobin -- or perhaps just knowing that you have low hemoglobin -- can cause that sensation of not being able to get enough oxygen? I just don't know. Maybe someone else on the Forum knows.

Keep in touch!

David M
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #53  
Old Tue Jul 5, 2016, 10:19 PM
Cheryl C Cheryl C is offline
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I had brain fog when my blast count was higher. I found that making myself do brain games like Sudoku helped even if it didn't completely solve the problem. We need physical exercise so brain exercise makes sense too.
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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 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #54  
Old Wed Jul 6, 2016, 11:03 AM
David M David M is offline
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Exercise for those with MAA?

Another thing I have noticed...

For those who have "Mild" AA symptoms, what has been your experience with exercising? Personally, I have been able to exercise -- and still do quite a bit... BUT there are limits -- when I push myself a little too far, I hit a "wall" where I must stop.

When I hit this "wall," I feel like I am sinking into a hole -- like I am going to faint. I get weak and wobbly -- and a little nauseated. And it takes me quite a while to recover from this. I have to stop and sit down at this point. I have found that the "trick" is recognizing when I am getting close to this "wall" and stopping before I go too far. But I am not always able to do this.

I have also noticed that by regularly exercising and pushing myself to get in better shape, I have been able to push this "wall" a little further out so that I don't hit it nearly as soon as my endurance has improved.

I have played sports most of my life, and I have run wind sprints, worked out intensely, etc. through the years, and I do not remember this "wall" phenomenon until I started having blood problems.

Have any of you with MAA had similar experiences with exercise?
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #55  
Old Wed Jul 6, 2016, 04:22 PM
KatailS KatailS is offline
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Quote:
Originally Posted by David M View Post
Another thing I have noticed...

For those who have "Mild" AA symptoms, what has been your experience with exercising? Personally, I have been able to exercise -- and still do quite a bit... BUT there are limits -- when I push myself a little too far, I hit a "wall" where I must stop.

When I hit this "wall," I feel like I am sinking into a hole -- like I am going to faint. I get weak and wobbly -- and a little nauseated. And it takes me quite a while to recover from this. I have to stop and sit down at this point. I have found that the "trick" is recognizing when I am getting close to this "wall" and stopping before I go too far. But I am not always able to do this.

I have also noticed that by regularly exercising and pushing myself to get in better shape, I have been able to push this "wall" a little further out so that I don't hit it nearly as soon as my endurance has improved.

I have played sports most of my life, and I have run wind sprints, worked out intensely, etc. through the years, and I do not remember this "wall" phenomenon until I started having blood problems.

Have any of you with MAA had similar experiences with exercise?
Hi David
I can't tell you what my diagnosis is yet but.....
Yes.... I feel exactly the same way and it has been so discouraging. Weak, wobbly, nauseated, winded and very shaky. I was very fit when this all began and my workouts were quite vigorous.... but it has become very difficult to push thru even a simple workout now. I do keep trying tho!
Will be interested to hear other people's experiences too.

Keep pushing that "wall", David
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Kathie - 52 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone, monitor bloodwork every three months
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  #56  
Old Thu Aug 18, 2016, 05:55 AM
Meri T. Meri T. is offline
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David,
I read your whole over 10 year "saga", so impressed and so glad that you still keep on posting. It gives us newcomers (so new: pantycopenia as of a few days ago, still yet to learn how to spell the word) some perspective and a lot of hope. Please do keep on posting !!
Sorry to post this in the same breath, :
Kathie, or anyone, have you experienced excessive menstrual bleeding? It's freaking me out since now I know the reason is because my platelet levels are low 70; NOT as I had thought, due to menopause. Can I do anything to cope with this?
Any advice is welcome, thanks.
David, hang in there. I'm rooting for you.
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  #57  
Old Thu Aug 18, 2016, 12:35 PM
David M David M is offline
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Saga...

Thanks for reading about my "saga." Actually, at this point, it is more like a 16-year saga! That's a lot of watching and waiting!

In 2009, when I wrote my original "My Story" post, I had been watching and waiting for about 9 years. However, it appeared to me things were trending downward at a slightly accelerated rate, and I was convinced that I was headed very soon toward some type of "treatment" -- whether it was transfusions, meds, or even ultimately a BMT. These things could still happen, of course, but since 2009, my counts have been amazingly stable. Still low, but stable.

Since then, I've kept an eye on it. I am very thankful for each new day.

Again, Meri T, thanks for reading my saga, and I hope it was helpful to you. I suggest for you to get better response to your question from the Forum, you may also want to post it in one of the other forums as well on this site, such as "Questions and Answers"... (probably more people would read it there).
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #58  
Old Thu Aug 18, 2016, 06:50 PM
KatailS KatailS is offline
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Quote:
Originally Posted by Meri T. View Post
Sorry to post this in the same breath, :
Kathie, or anyone, have you experienced excessive menstrual bleeding? It's freaking me out since now I know the reason is because my platelet levels are low 70; NOT as I had thought, due to menopause. Can I do anything to cope with this?

David, hang in there. I'm rooting for you.
Hi Meri and welcome.... so sorry to hear you are dealing with this....
Yes.... I will send you a message to share more details so we don't high jack David's thread with female issues (you are welcome David )

I am rooting for you too, David
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Kathie - 52 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone, monitor bloodwork every three months
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  #59  
Old Tue Jul 18, 2017, 12:46 AM
David M David M is offline
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Yearly Update -- 2017

Hello All,

Well, it is time once again for a yearly update. I am very thankful to report that once again, in the past year or so, very little has changed with my condition. Pancytopenia is still a reality for me, but as far as I can tell, it has gotten no better -- and no worse -- during this time.

Below are counts from my last 4 CBCs... (10/17/16, 4/17/17, 7/3/17, 7/17/17):
RBC: 2.83...2.61...2.67.... 2.71
WBC: 3.9...3.4...3.1... 3.4
Lymph #: 1.6...1.5...1.17.... 1.2
Lymph %: 42...45.3...37.6.... 36.7
Neut #: 1.48...1.18...1.27.... 1.40
Neut %: 38.1...34.9...40.9... 41.8
Hgb: 10.5...9.5...9.9.... 9.9
HCT: 30.5...29.1...Not avail... 29.8
Platelet: 56...42...42.... 41

I have had pretty good energy in the last year, and did some pretty regular exercise during much of this time. However, I have been feeling quicker to become out of breath and tire out -- and slower to recover from activities requiring strenuous effort. Overall, I'd say my fatigue factor has increased slightly during this time.

I have not been sick (any more than usual) during this time, and no abnormal bleeding or bruising. Still not on any medications for this condition -- thankfully! No transfusions or treatment needed to this point.

My hematologist at Vanderbilt (who is retiring in the next year) said on my 7/3/17 visit -- "Your counts are amazingly stable!" I guess I am something of an anomaly, but I know there are others out there with similar symptoms as I have. And we all know how these things can change -- and change quickly. So, we will continue to "watch and wait."

As I said above, I have felt a bit more fatigued in this past year, and I have also felt (or at least I think I have felt) a higher level of "brain fog" setting in -- although both these things are hard to pinpoint exactly. How do you quantify "fatigue" or "brain fog"? How do I know if I have more of this than "normal" for someone my age? Anyway, I THINK I am experiencing these things.

To sum up, I am very thankful for the very slow changes -- the apparent plateau -- that my counts seem to be on right now. Everyone is different, and we all have different battles related to our bone marrow. I am very thankful for this forum, although I don't comment that often. I am amazed at some of the stories on this forum -- the battles that many are going through. You all help me to be strong!

David M

P.S. -- One more thing... my hematologist at Vanderbilt (who is a bone marrow transplant specialist) commented that in the time I have been going to him (since June, 2009), transplant technology has improved significantly. He said age is not nearly as great of a factor as it was just a few years ago (now more about the current physical strength of the patient going into transplant), and they are now doing more and more transplants with un-matched related donors! Well, I don't know much about transplants, but his point was, transplant technology is marching on at a rapid pace!
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #60  
Old Tue Jul 18, 2017, 12:14 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by David M View Post
As I said above, I have felt a bit more fatigued in this past year, and I have also felt (or at least I think I have felt) a higher level of "brain fog" setting in -- although both these things are hard to pinpoint exactly. How do you quantify "fatigue" or "brain fog"? How do I know if I have more of this than "normal" for someone my age? Anyway, I THINK I am experiencing these things.
While stubbornly low hemoglobin can cause both of these symptoms, so can normal aging. Perhaps it's the effect of being 17 years older than when your pancytopenia was first detected.
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  #61  
Old Tue Jul 18, 2017, 02:44 PM
David M David M is offline
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Gettin' Old...

Neil, I had thought of that too. As weird as this sounds... at this very moment in time, I am the oldest I have ever been, so before now, I really didn't know how it feels to be THIS old!

I think many of us are tempted to blame every slightly odd thing that we feel or encounter health-wise on our blood problems.
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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