Patient Comments: Neutropenia - Treatments

How did you treat your neutropenia?

Comment from: Colleen, 45-54 Female (Patient) Published: May 09

I was diagnosed with cyclical neutropenia after repeated abscesses under my arm and on my back, then strep throat. By this time the hematologist was having me do CBC blood work twice a week. I have never had chemo or cancer for that matter. So it is unclear as to why I got neutropenia. I am on weekly self-injected neupogen. It has helped with the infections. I stopped taking it for three weeks and manifested abscesses again. SO it looks like it may be a lifetime thing.

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Comment from: 55-64 Male (Caregiver) Published: November 16

My husband's white blood count had been dropping for years. He was diagnosed with MDS, his form is neutropenia. He was treated with neulasta once a month for 16 months until it caused his spleen to enlarge and had a threat of rupturing. They have discontinued the Neulasta and he started this week on a Chemotherapy drug called Vidaza - which is supposed to target the bad white blood cells, hopefully get rid of them and let the good ones to grow.

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Comment from: 35-44 Male (Caregiver) Published: August 09

My brother has recently died after the doctors eventually found out what it was after 6 years on every treatment going from Chemo to shots of B12. The last one before he went into the IVU was 6000 extra calories and also direct injections into his stomach. He was in there for pneumonia and never recovered a few weeks later. He was down to around 5 stone and was a fighter. They told him that they released him from the hospital too soon and if he had been left in there they may have helped him more. It was said he had an angry cell that destroyed any white cells in his body and they couldn't do anything now.

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Comment from: sylvia, 35-44 Female (Patient) Published: June 20

I have neutropenia. I was getting lots of infections. I'm now on Neulasta injections. They make me feel terrible for a week, but I don't get infections, so it's the better of two evils.

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Comment from: imdb, 45-54 Female (Patient) Published: August 05

I have recently been diagnosed with Neutropenia after having low white blood cell count most (if not all) of my life. After a bone marrow biopsy, shots of Neuprogene (sp?), and multiple blood tests, my doctor has determined that this is just the way I am. Other than being fatigued (and this could be from anything), I feel fine. I get occasional mouth sores, but am a pretty healthy person overall. Take heart. If I hadn't been diagnosed for a sinus infection, I would have been none the wiser.

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Comment from: starmidnite, 0-2 Female (Caregiver) Published: April 17

My daughter has always had bad staph infections in the diaper area. Recently, she had strep throat and had a fever for more than a week. She was hospitalized and was diagnosed with neutropenia. Now they have no answers and no plan of care.

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Comment from: Mak, 35-44 Female (Patient) Published: February 07

I have had neutropenia all my life. My neutrophils are very low. I suffer mouth ulsers and strep throat a lot. I am constantly washing my hands to avoid getting germs, this helps. I also take cayenne pepper regularly, it kills bacteria. People with neutropenia cannot fight bacteria so cayenne pepper does this for us.

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Comment from: Theresa Feichtinger, 55-64 Female (Patient) Published: November 26

When I was first diagnosed with neutropenia I would get very bad ulcers in my mouth and be sick all the time. I am not allowed to run a fever. I have had 3 bone marrows done and am working on the fourth. I had to give myself shots to bring up my level. I can not find out why I have this. I am continually seeing oncology doctors. My count has gone very low even with the flu. I get big boils on my head. I almost had to be put on IV infusion. I had to have my tonsils out 2 times because I was so sick.

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Patient Comments

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Neutropenia - Describe Your Experience Question: Please describe your experience with neutropenia
Neutropenia - Symptoms Question: What symptoms did you experience with your neutropenia?
Neutropenia - Diagnosis Question: In addition to blood tests, what other types of tests or exams did you have to determine the cause of your neutropenia?

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