falling labs over the past year with aplastic anemia

[Ellen McDonough]

Hi
I have noticed over the past year falling WBC's and neutrophils counts. My hematologist doesn't seem to be concerned. Recently I was also found to have iron deficiency anemia and received an iron transfusion. I was diagnosed with severe aplastic anemia 13 years ago.Treated at the time with horse ATG and Cyclosporin.Not on any current meds. I do get frequent sinus and urinary infections over the past year since my labs have dropped.
I am wondering if it might be time to check a bone marrow biopsy.My last bm bx was in 2017.
I am vegan but eat plenty of foods with iron and take extra vitamin C for absorption.I take B 12 and a multivitamin with iron.
I am seeing my hematologist tomorrow so any input would be helpful! Thanks
Ellen

[Neil Cuadra]

Ellen,

You're smart to be paying attention to your counts, seeing your hematologist, and managing your diet. You're a long-term survivor, and part of the reason may be because you watch what's going on and ask questions!

You might as well start with the hematologist's opinion about your counts, how serious a concern that is, and what tests might be warranted. Infections could very well be related to your white count, so be sure to ask about that. It sounds like the changes in blood counts have been gradual. You should continue to monitor and track your counts and note any related symptoms you experience, like fatigue.

Many treatment centers have nutritionists on staff, so you might consider consulting one if you want to double-check on your dietary needs beyond iron and vitamin C. The consultation might even be covered by insurance, especially if your hematologist refers you to that department.

Please let us know what you learn.

[Ellen McDonough]

Thank you!
My friend who has severe aplastic anemia for as long as I have recently progressed to MDS.He had been diagnosed around the same time as me.He recently underwent BMT and is doing well.I guess I'm sensitive currently because of the fact my friend was doing very well for 11 years with SAA post IST and then suddenly progressed to MDS. He lives here in the Denver area and I have been trying to help him when I can post transplant.
It kinda makes me a little nervous about myself though seeing my own numbers changing.

[Matthew42]

Dear Ellen,

I wouldn't worry about dropping neutrophils. My mother's hematologist said that aplastic anemics have autoimmune neutropenia that is usually isolated (meaning other aspects of the immune system are usually working well). Neutropenia that is neither autoimmune nor isolated is way more dangerous. That said, it's always best that neutrophils stay at around 500 or more, but being 300-500 is not that big of deal if the neutropenia is autoimmune and isolated. It's when the neutrophils average under 200 that real problems can arise, no matter the cause of the neutropenia. But, again, there are people who will have neutrophils that are under 200 for a long time and won't get serious infections. It's all a mystery. My mother's doctor said that some people have what appears as a perfect immune system and end up deathly ill from infections, viruses, etc.

By the way, what kind of MDS does your friend now have? Is it hypocellular MDS (rare autoimmune form of MDS), which is treated the same as classic aplastic anemia? Proper MDS is not autoimmune, as you probably know, and is treated very differently than aplastic anemia. My mother's doctor said that hypocellular MDS and aplastic anemia are so similar that they are sometimes not distinguishable from each other, except for the higher presence of dysplastic cells in the bone marrow. And, sometimes, the amount of dysplasia changes drastically over time, going back between aplastic anemia and hypocellular MDS.

I am sincerely wishing you the best of health, dear Ellen. May you be happy and healthy.

[Ellen McDonough]

Thank you Matthew. Unfortunately my neutrophil count has dropped and infections have been associated with it. I never used to get infections before the past 1 1/2years. This is a change . This is why I am concerned along with a ferritin level and RBC's that have dropped. These are all changes. This why I am concerned.I spoke to my hematologist and he is recommending colonoscopy to determine if the RBC's and ferritin drop are coming from the colon.My friend has had the MDS associated with cancer. They had found cancer cells in his marrow. Luckily post transplant he is cancer free.

[Hopeful]

Hi Ellen,
I am about your age and also received ATG in 2009. I have been doing well with a partial response but am cyclosporine dependent.

My ANC is also low and has also been slowly falling over the years. My hematologist isn't overly concerned, but like you, I am a little worried with the trajectory.

Just thought I'd let you know that you are not alone. I'll share anything that I learn and am interested in what you learn along the way.

Take care!

[Matthew42]

Originally Posted by Hopeful

Hi Ellen,
I am about your age and also received ATG in 2009. I have been doing well with a partial response but am cyclosporine dependent.

My ANC is also low and has also been slowly falling over the years. My hematologist isn't overly concerned, but like you, I am a little worried with the trajectory.

Just thought I'd let you know that you are not alone. I'll share anything that I learn and am interested in what you learn along the way.

Take care!

Dear Hopeful,

If you don't mind me asking, what is considered a low dose of cyclosporine?

Please take good care of yourself.

Wishing you the best of health.

[Hopeful]

Hi Matthew,

I'm on a "maintenance" dose which is 2.5 mg/kg of body weight.

[Ellen McDonough]

Thank you so much! That makes me feel better : )

[Ellen McDonough]

I had an iron transfusion about 2 weeks ago. Had CBC drawn since then and labs are already down. Hgb-11, WBC's-2.3, and-1.3, RBC-3.68 and 2+ Anisocytosis- which means anemia.
Why are my counts already down ?
My hematologist isn't budging with regards to doing a bone marrow biopsy...He wants to see a trend. I have a colonoscopy scheduled for 9/28 to check if anemia is coming from there.
It is a big change for me.I went hiking last weekend and really had no energy compared to the usual. I walked the Camino de Santiago after I got better from aplastic anemia in 2015.This is a change.... It's scaring me.

[Meri T.]

Hello Ellen,
I just wanted to say that my best friend walked the Camino de Santiago for me when I was in the hospital. I'm glad to say it worked really well for me, spiritually.
I hope you feel better soon.
Meri.

[Hopeful]

Hi Ellen,

Your anemia is concerning for a bleed somewhere. Can you move up your colonoscopy date? Have you been recently tested for PNH?

The Camino de Santiago is on my bucket list!