Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Dec 1, 2009, 01:51 AM
Deanna16 Deanna16 is offline
Member
 
Join Date: Dec 2009
Location: New York
Posts: 39
Red face Newbie Story / "not typical" AA presentation

Hi All! I have been lurking on this site since I was diagnosed in this past Sep. '09. My routine physical showed I was anemic and have low WBC (2.8)so I was referred to a hematologist/oncologist. (Same visit resulted in my being tested for MS and breast cancer but that is for another forum )

My hematologist was not impressed by the iron dificiancy but was concerend about the low WBC (ANC 2). I had a history of moderate anemia in the past but never anything with the WBC. After several visits she insisted that they were two seperate issues. I have a very strong family history of autoimmune diseases so she felt statiscally speaking that my WBC was a result of something like that going on in my body.

To get to a "diagnosis" I was pumped full of B12 and had all nutrient levels tested...my WBC got lower (ANC 1.5). I was pumped full of iron pills...hemaglobin only went up a bit but my ferrtin went from -1 to 6, WBC went down (ANC 1.3). During this time I was also seeing a rhematologist who tested me for everything under the sun and was baffled that nothing came back pointing in any one specific direction: sometimes I had a high sed rate, sometimes not; sometimes a positive ANA, sometimes not.

The hematologist had started off saying that we would look at the B12 counts, autoimmune diseases, and then discuss the possibliity of a bone marrow draw and it being cancer...but she strongly felt it was something autoimmunilogical going on.

After taking an 8 week break from blood tests I went back to her office and my iron was low again and my ANC was 1.1. She wanted to start Neupogen but said I would have to have a bone marrow draw first just to make sure something serious wasn't going on, but she was sure there wasn't. She really didn't think I had a cancer festering in me, or lupus or anything else for that matter. She believed (and this is also somewhat of an AA theory too from what I've heard) that my body is just killing off my white cells.

So I get the bone marrow draw and to her suprise I have less than 10% cellularity. The bone marrow of a 90 year old (which is how old I feel!)

I took the news of having AA very calmly, so calmly that she told me that "you don't understand the severity of what I'm telling you" But I did know because I had stumbled upon AA while trying to figure out what was wriong with me all summer...I just didn't think it was a possiblility because most of what I found described it as all counts being low, not just one.

I immediatly did ask her just that, didn't all my counts have to be low? And while it is not typical she stated that some patients do present with just one type (RBC, WBC, platelet) being low.

I did see a "specialist" who I was not thrilled with and he and his pathologist did confirm the diagnosis. Unfortunatly the day I actually saw him my WBC was the highest it had been in 8 months (4.4) because I was not feelign well and it led him to initally believe I had a transient case of AA or bone marrow failure and I was on the road to recovery...what would the chances being goign to see a specialist on teh day my body begins to recover. So he didn't really give me a chance to ask my questions because to him I was fine. When I asked about the bone marrow draw results he said "it could have been a dry spot" and that IF my counts went down again he wanted me to get another one down. He really did not listen to my plight that I did not feel well and that this was the highest it had been a in a while...very frustrating. But again, after more bloodwork and my counts dropping back low (ANC1.0), my hematologist explaining all that had been going on and him and his team looking at my records and slides they did confirm AA. A moderate case, but still AA.

I suppose I am just still in disbelief and it would be helpful for me to find someone else out there with a similar presentation: low WBC, anemic, bone marrow failure. My platelets and RBC have been perfectly fine. I just still wonder if it is something else. For now I am "watching and waiting". I suppose I should be grateful but it's nerve wracking! I have had 10 IV iron treatments, but still feel exhausted more than a 29 yr should be. I amd married, have 3 kids, work full time and go to school part time: I know what my usual tired is, and this is not it.

There must be someone out there like me
Reply With Quote
  #2  
Old Mon Feb 8, 2010, 09:36 AM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Smile Hi Deana

I had a story like yours too. When I went in to have my daughter (in Houston) in 2001, they did a CBC that was so low, they had to intubate me and give me an emergency c-section. My hgb was 6, platelets 60 K. I was followed 6 years (with CBC's and some bone marrow biopsies) with no answers. I decided to move to Austin to try to get healthier. I saw several diff doctors & was diagnosed in 2007 with moderate/severe aplastic anemia. My doc (I had to drive to Dallas from Austin to finally get diagnosed) was ready to do a transplant, and I said, "Wait a minute, not so fast!), and got a 2nd opinion at the NIH (where they study AA). Dr. Neal Young told me I only had mild, and that they don't do anything for mild, you just had to take care of yourself. That was 3 years ago, now I have moderate and got my first blood transfusion in December 2009 (right before going to Disneyworld for the first time!). I am about to start taking Danazol next month, maybe it will slow my disease progression. I am also learning all about diet, and how it affects your health. You are younger than me, and shouldn't feel so crappy, but it could have to do with how you eat too. If you don't want to get sicker, you may want to look into a vegetarian diet. Most people that have beat cancer advocate a Raw diet, this is hard to do, but I'm trying the vegetarian route. Good luck & if you'd like to keep in touch, you can send me a message. Hugs and hang in there...Linda
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #3  
Old Wed Feb 10, 2010, 10:21 PM
Deanna16 Deanna16 is offline
Member
 
Join Date: Dec 2009
Location: New York
Posts: 39
YEAH! Finally a reply to my VERY long first post LOL! Thank you linda! I actually eat pretty well. Between 2005 and 2007 I lost 120lbs. But I am open to anything that will slow down the progression on this disease. And i have to admit since I was diagnosed i've eaten one too many brownies. I just wish my doctor was concerned about the possibility of progression as much as I am. I have three little ones to think of and have a strict type A personality, so this really threw me off my game LOL Thank you for the reply and I look forward to bumping into you on here some more )
__________________
~Dee~ ) 29yr, wife and mom of 3 :: Dx Moderate AA 9/09, treated with IV iron, currently "watch and wait" :: RBC,Platelets "ok" - low WBC and ANC
Reply With Quote
  #4  
Old Thu Feb 11, 2010, 05:16 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Smile Hi Dee

Hi ),

I used to think I ate pretty well too, but am now trying to be a vegan. I was having trouble with shortness of breath, but after being vegan for a week, found out that half in half in my coffee was the culprit! I started off with half of my plate being veggies, but found out that we are supposed to be eating 7-13 servings of veggies and fruit a day, and that doing so can prevent alot of health problems everyone in America is facing. You may want to go to half-price book stores or your library, and get some books on how to beat cancer or other autoimmune diseases. I have several, and the gist of it is that sugar feeds cancer. Not that we have cancer...but something like it. They advocate a raw diet. Now, I haven't been able to do just that, but am trying to eat something raw with every meal, and get my sugar fixes from agave nectar, fruit, and honey. Raw food has enzymes in it that help to break down food, so your body doesn't have to use its own, and can concentrate on other things (like fighting this stupid disease!). Also, I am careful of everything I put in, or on my body. I switched to all natural cleaning products, vinegar can clean alot of things...I also don't put petroleum or mineral oil products on my skin, they are made from crude oil...I don't know where you work, but I found out that I could get exercise equipment covered from my flexible spending account with a doctors note. I got a treadmill & started walking last month. This disease was making me eat lots of brownies too! And then I was too tired to do anything, so now I don't have excuses...If you'd like me to share my recipes with you (that the whole family likes), you can message me your email address & I'll add you to my list. I wish you the best of luck, and hope you are there for your grandkids!! I really mean that, we are fighting for our lives...hugs, Linda
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #5  
Old Fri Feb 12, 2010, 09:18 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,306
Food....

We found, especially after John's treatment, that a vegetarian diet did not support his healing enough. We've always eaten healthy but found that we did not have enough protein in our diets. So we upped the protein. I spent a lot of time looking into this first at the Weston Price Foundation organization. I then read the book, Metabolic Typing by Wilcox which looks at what mix of protein, carbs and fats best suits you. Your either protein, carb or mix. We both ended up being a mix type. We then made sure we had the right balance each meal with protein being dominate. And you never eat a carb without some fat or protein.

We make sure the bulk of our protein comes from meat and is raised without hormones or antibiotics, and organic if possible. Grass fed is the best. Our fats are from olive oil, coconut oil, sesame oil, and butter.

I did invest in juicer and did that for a while. John had a difficult time with nausea from the iron chelation drugs and many times the juices were too strong.

The one thing about Raw Food diets is that raw food takes lots of energy to digest and breakdown the food. In chinese medicine, it is usually contradicted in weakened states because it can deplete your chi.

We both have found that adding in more animal protein and good fats has help with energy, strength and stamina. Of course it helps if you have all your blood.

So if you go the vegetarian route, you need to make sure you get enough good quality protein.
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
New to AA, my story grueter AA 8 Fri Feb 17, 2017 07:29 PM
New member, AA story halles25 Tell Your Story 0 Thu Jul 1, 2010 02:54 PM
Newbie Tells Her Story Debbie S Tell Your Story 3 Sun Feb 18, 2007 05:23 PM


All times are GMT -4. The time now is 04:49 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org