National Neutropenia Network

Awareness, Education, Research

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Medical Specialists

This page contains background and specialty information on a number of individuals working to understand and find ways to alleviate Neutropenia. You are encouraged to reach them if you or someone you love has or may have neutropenia. These videos were recorded at the Neutropenia Family Conference in San Diego in 2010.

PETER NEWBURGER, MD

Vice Chair of Pediatrics, Hematology/Oncology, Professor, University of Massachusetts Medical School; SCNIR Board Member

Peter E. Newburger, MD, is the vice chair of pediatrics and director of the Division of Pediatric Hematology and Oncology at the University of Massachusetts Medical School. He also serves as professor of Pediatrics and Molecular GeneticsMicrobiology and professor of Pediatrics and Cancer Biology at University of Massachusetts Medical School and Graduate School of Biomedical Sciences. Dr. Newburger serves on the scientific advisory board and executive committee of the Severe Chronic Neutropenia International Registry.

He holds numerous editorial positions including associate editor of Pediatric Blood and Cancer and until last year, section editor for the hematology/oncology section of the Current Opinion in Pediatrics. Dr. Newburger currently serves on the following editorial boards:

Hematology/Oncology Today, Journal of Pediatric Hematology/Oncology, Current Pediatric Reviews, Current Opinion in Pediatrics, and the American Journal of Hematology; and has served as manuscript reviewer for the last three years for: Am J Hematol, Blood, Br J Haematol, Cancer Res, Circulation, Eur J Hematol, Exper Hematol, Gene, J Biol Chem, J Cell Physiol, J Immunol, J Leukocyte Biol, J Pediatr Hematol Oncol, Mol Cell Biol, Pediatr Blood Cancer, PNAS.

Dr. Newburger’s research interests include molecular genetics of phagocyte function and development; molecular mechanisms of selenoprotein translation; and the biology and treatment of childhood malignancies. In 2005, Dr. Newburger received the Ali and John Pierce Endowed Chair in Pediatric Hematology/Oncology, and this year was recognized as a Castle Connolly Top Doctor.

University of Massachusetts School of Medicine
55 Lake Avenue North Worcester, MA 01655
Phone 508-334-4225
Fax 508-856-4282

DAVID C. DALE, MD

Professor of Medicine, Department of Medicine, University of Washington; Co-Director, Severe Chronic Neutropenia International Network

Dr Dale has been professor of medicine in the Department of Medicine at the University of Washington in Seattle for more than 25 years. He received a medical degree from Harvard University, residency training at Massachusetts General Hospital and the University of Washington, and served as a senior investigator with the National Institute of Allergy and Infectious Diseases’ Laboratory of Clinical Investigation at the National Institutes of Health in Bethesda, Maryland. Other past positions include serving as dean of the School of Medicine at the University of Washington.

Dr Dale is president-elect of the American College of Physicians (ACP) for 2006-2007, editor-in-chief of ACP Medicine, and an editorial board member of Clinical Advances in Hematology and Oncology and Journal of Experimental Hematology. His research interests center on neutrophil physiology, neutropenia, and hematopoietic growth factors, and he has published widely on these subjects in journals such as Supportive Cancer Therapy, Journal of Supportive Oncology, Drugs, Seminars in Oncology, Journal of Clinical Oncology, Blood and American Journal of Hematology. He has also written chapters and sections for the Merck Manual, Williams Hematology, Blood: Principles and Practice of Hematology, Clinical Hematology and ACP Medicine 2006.

Dr. Dale currently serves on the National Board of Sponsors for Physicians for Social Responsibility and is co-director of the Severe Chronic Neutropenia International Registry.

Phone 206-543-7215
Fax 206-685-4458
University of Washington Dept. of Medicine
Box 356422 Health Sciences Bldg., Room AA522 1959
NE Pacific Street

MARY ANN BONILLA, MD

Assistant Professor of Pediatrics; Pediatric Hematology/Oncology Specialist; St. Joseph’s Children’s Hospital; SCNIR Board Member

Mary Ann Bonilla, MD, graduated from Loyola University Stritch School of Medicine, Chicago, Illinois, in 1981. She completed a pediatric residency at Brookdale Medical Center, in N.Y. In 1984, she began her training in pediatric hematology/oncology at Memorial Sloan Kettering Cancer Center/Cornell New York Hospital. It was during her research years, that she joined Dr. Karl Welte’s laboratory. The preclinical studies of G-CSF (Neupogen) in chemotherapy-induced neutropenia were performed there in association with Dr. Richard O’Reilly. The G-CSF’s ability to induce increased neutrophils then led to clinical trials in patients with congenital neutropenia. She has participated with the Severe Chronic Neutropenia International Registry since it’s inception. Presently, she holds a faculty position at Columbia University and St. Joseph’s Children’s Hospital in Paterson, NJ. Primarily a clinician, she continues to follow many of the original group of SCN patients as well as practices general hematology/oncology. She lives with her family and pets in New Jersey.

Phone 973-754-3230
Fax 973-754-3331
St. Joseph s Children’s Hospital
Pediatric Hematology Oncology
703 Main Street
Paterson, NJ 07503

DAN LINK, MD

Professor of Medicine, Division of Oncology; Section, Bone Marrow Transplant; Assistant Professor of Pathology; Washington University School of Medicine

Phone 314-362-8771
Fax 314-362-9333
Washington University School of Medicine
Division of Bone Marrow Transplantation
660 South Euclid, Campus Box 8007
St. Louis, MO 63110

AKIKO SHIMAMURA, MD

Director, Bone Marrow Failure and Myelodysplastic Syndrome Programs, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, Associate Professor of Pediatrics at Harvard Medical School, SCNIR Advisory Board member 

Akiko Shimamura MD graduated from the University of Rochester Medical School in 1991. She earned a Ph.D. from the same institution in 1990. Her area of clinical interest includes: Inherited bone marrow failure and aplastic anemia, Swachman-Diamond syndrome, Fanconi anemia and Diamond Blackfan anemia.

Dr. Shimamura directs the Bone Marrow Failure and Myelodysplastic Syndrome Program of  the Dana Farber/Boston Children’s Cancer and Blood Disorders Center. Her research focuses on translational studies spanning clinical through basic science investigations to understand the genetic and molecular basis of bone marrow failure, MDS, and leukemia predisposition with the goal of developing more effective and less toxic treatments. Dr. Shimamura had previously directed the Bone Marrow Failure Clinic at Boston Children’s Hospital and then at Seattle Children’s Hospital before returning to Boston Children’s Hospital in the fall of 2015.

Phone 617-919-6109
Fax 617-730-0934
The Shimamura Lab
Boston Children’s Hospital
1 Blackfan Circle, Karp 8210
Boston, MA 02115

LAURENCE A. BOXER, MD – IN MEMORIAM

5/17/1940 – 1/7/2017

Dr. Boxer was an active member of the Society for Pediatric Research (SPR), for which he served on its Council from 1982-1985, and then become the President of SPR in 1986. In 2001, Dr. Boxer was elected to the Council of the American Pediatric Society. He had an active leadership role in other academic societies such as the American Society of Hematology. He served on several editorial boards including a role as associate editor for the Journal of Clinical Investigation and the American Journal of Hematology. He was a member of a number of other societies including the American Society of Clinical Investigation and the American Association of Physicians.

In 1997, Dr. Boxer was elected as a Fellow of the American Association for the Advancement of Science. In May 1998, he received the Founders Award from the Midwest Society for Pediatric Research. He was honored by being selected to give the Distinguished Faculty Lectureship Award at the University of Michigan Medical School.

Dr. Boxer was a member of the executive board of the American Society of Pediatric Hematology/Oncology. Since the inception of the Severe Chronic Neutropenia International Registry, Dr. Boxer served on the Executive Board of Directors. He was the head of the publications committee for the Journal of Pediatric Blood and Cancer, and was on the publications committee of the journal Blood of the American Society of Hematology.

Most recently, Dr. Boxer was honored with the 2016 ASH Mentor Award for his sustained, outstanding commitment to the training and career development of early-career hematologists.

Additional Specialists

Professor Karl Welte, Co-Director
Phone 49-511-532-6710
Fax 49-511-532-9120
Kinderklinik, Medizinische Hochschule
Carl-Neuberg-Str. 1
30625 Hannover, Germany

Blanche Alter, MD, MPH, FAAP
Phone 240-276-7239
Fax 240-276-7836
NIH, National Cancer Institute
Clinical Genetics Branch
9609 Medical Center Drive
Room 6E452, MSC 9772
Rockville, MD 20850

Audrey Anna Bolyard, RN, BS
Phone 206-543-9749
Fax 206-543-3668
Clinical Manager
Severe Chronic Neutropenia International Registry (SCNIR)
University District Building
1107 NE 45th Street, Suite 345
Seattle, WA 98105 USA

Jean Donadieu, MD

Phone 33-1-44-73-60-62
Fax 33 1 44 73 65 73
Service d’Hematologie et
Oncologie Pediatrique
Hopital Trousseau
26 Avenue du Dr. Netter
75012 Paris, Cedex 12, France

Sally Kinsey, MD
Phone 44-113-206-4985
Fax 44-113-247-0248
Paediatric Haematologist
St. James’s University Hospital
Leeds LS9 7TF,UK

Philip S. Rosenberg, PhD
Phone 301-435-3996
Fax 301-402-0081
Division of Cancer Epidemiology and Genetics
NIH, National Cancer Institute
6120 Executive Blvd., EPS 7006
Rockville, MD 20852-7244, USA

Connie Zeidler, MD
Phone 49-511-546-0918
Fax 49-511-557-106
Kinderklinik Medizinische Hochschule
Carl-Neuberg-Str. 1
30625 Hannover, Germany

Tate

Age 13 – Medina, Ohio

Tate is an 8th grader in Medina, Ohio. Tate’s family “has always celebrated Neutropenia as a part of Tate that makes him stronger”, in turn, making their family stronger. Tate and his family have been big supporters of a few of the other Junior Ambassador’s events over the years. They have also attended many of the Neutropenia Network’s family conferences.  Tate’s mom, Gretchen, has shared a bit about Tate’s journey as well as how he has earned the title of one of our Junior Ambassadors for 2023-2024….

Tate was diagnosed with Neutropenia at 16 months. After all the illnesses and unexplained fevers, we were relieved to have an answer. Starting G-CSF was not only life-saving, it provided a “normal life.” Tate has always proudly shown other kids how brave he is for taking a shot. He does well, though he has had several stays at the hospital over the years. Although he doesn’t like those episodes at the time, now he says when he thinks about them, they actually make him feel special and strong because he can get through them and get back to normal. Although Tate would probably like a cure, he is much more focused on having a pill someday because a pill would make him feel even more normal. Tate thinks of his Neutropenia as being allergic to germs. His cousins are allergic to food dye, and he prefers his allergy to theirs because he can eat Superman ice cream.

Tate has been advocating and raising money for Neutropenia since before he could talk. Due to the coronavirus, his normal opportunities to advocate and raise money for Neutropenia were curbed. Normally every summer his old daycare has a fundraising event called “Tate’s Race” where they have an obstacle course. Tate talks to the kids about what it’s like to have Neutropenia and getting a shot every day. Tate wants to connect with other kids and help them “be okay” with having Neutropenia. He hopes to be able to work with the NNN to create videos for kids that can be posted on the NNN website.

Tate attended the Family Retreat this summer (2023) and played an integral role in the Kids Camp as well as breakout sessions that included talking with parents about what it’s like to be a teenager with Neutropenia. Tate will continue in his role as Junior Ambassador for 2023-2024. We can’t wait to see what you do next Tate!

Jaiya

Jaiya is an 11th grader in North Carolina.  She was diagnosed at the age of 2 with Chronic Severe Neutropenia-Autoimmune.  Jaiya’s body responds poorly to Neupogen and as a result has not been able to remain on it as a form of treatment.  Her Neutropenia has caused her and her family to spend countless nights in the emergency department resulting in extended stays at the hospital.  She is blessed with an extremely supportive family and community who are  giving Jaiya a strong foundation to  define Neutropenia on her own terms.  She has found her voice in raising awareness and being an advocate for the Neutropenia community through raising awareness about Rare Disease Day, multiple social media campaigns, painting events, and the formation of her own Foundation. This past year Jaiya became involved in a local nonprofit that serves single mothers.  Read below to see how Jaiya has made an impact on single mothers whose children have chronic illnesses.

“ I have partnered with Level Up Parenting to serve single mothers.  Level Up Parenting is a local nonprofit that serves single mothers in a lot of different ways.  I got with the president and her board to find single mothers with children with chronic illnesses.  My parents work hard to get me the care I need, and they do it together.  So, I figured it is extra hard on single moms. I spent 6 weeks in June and July 2023 surveying the single mothers that already work with the nonprofit.  I had a QR code that I used as asign-upsheet and questioner at most of theorganization’sevents in June and July. I was able to work with 5 mothers that have children with chronic illness.  My team created packages for the mothers that included mental health resources, thermometers, children’s Tylenol and ibuprofen as well as information from the health department. I partnered with Level Up Parenting to host an event on September 16th for the 5 moms I worked with and the other moms. It was a health fair where the children were able to come and get free dental services and 7thand 12thgrade immunizations required by our state.  We fed the families and allowed the moms to receive free massages.”

Congratulations Jaiya!! You continue to make a difference in your community!! Jaiya has served as a Junior Ambassador since the program began and will continue to do so for the 2023-2024 term.  Job well done, Jaiya!

Ella Jewell

Age 14, Florida

“Ella Jewell was diagnosed with Severe Congenital Neutropenia at 3 1/2 months old. After being told by many doctors in the New York City Area that they were unsure as to why Ella had zero neutrophils, her family sought out the expert opinion of the late Dr. Larry Boxer. After being in isolation with Ella for months, they drove to Michigan from New York. Dr. Boxer helped to diagnose Ella and get her on the one medication available to treat Neutropenia –  GCSF/ Neupogen. The medication worked well for Ella and her family found out the medication was working on Christmas Eve. They were able to share Ella with their family for the first time on Christmas morning. Dr. Boxer referred to Ella as the Christmas Miracle Baby! Ella’s family felt fortunate for how well Ella had done and wanted to do all that they could to move research in the right direction for Ella and everyone diagnosed with Neutropenia. They asked the doctors how they could best support the research. Unfortunately, at the time there was not another organization directly assisting with funds for research. With the support of Dr. Larry Boxer and Neutropenia expert, Dr. David Dale, the Ella Jewell Foundation was established to support Neutropenia Research. The Ella Jewell Foundation works closely with the National Neutropenia Network and the Neutropenia community to help patient support programs and research. Every penny raised is donated. Ella has her challenges with her diagnosis, but her family stays positive and with the Neutropenia community and researchers, they work towards the ultimate goal ~ a cure.” 

Olivia

This is Olivia’s story. She tells it with honesty and courage. Few stories better convey the conflicts, confusion and challenge of living with a rare and chronic disease. In Olivia’s case, a disease that has caused heartache for two generations of her family. We are grateful to Olivia for being so open and truthful in her generous narrative.

I Am Olivia

I like to think that throughout my life I have more or less done my best with what I’ve been given. My best cannot always be the best-but that’s okay. Recently I have come face to face with some significant self- discovery. Thus leading me to a number of topics and feelings that are, to me, less than comfortable to face up to.

My name is Olivia, I am a part time college student/table busser/eighteen year-old hopeful. Sometimes it feels as though I am full time Neutropenic/anxiety ridden/barely existing half-human. As far as the chronic illness goes, I was born with Cyclic Neutropenia, of which I inherited from my father, John. My grandparents had three out of five children, all sons, born with Cyclic Neutropenia. Two of them, Matt and Louie, died in their later teens.

My father and I started on GCSF, Neupogen, “the juice” just about a year apart. It must’ve been 1996 when I started receiving injections daily. My parents had been reluctant to have me on the medication. I think mostly due to imagining administering to their first born infant a poke with a needle every night. But when after a year or so of being alive I had been frequently hospitalized and treated for infections and jabbed with butterfly needles into my tiny veins, they decided that since I wasn’t getting better the medication was a good idea. I’m thankful they did. I’m also extremely thankful more and more for the NNN and their vast abilities to make something collectively positive out of the excruciating mess of disease. I see the faces of Audrey Anna Bolyard and such like Lee Reeves, both of whom I have known since before I can remember. I know they and the other doctors, researchers, event planners, etc will always hold a special place in my heart. I truly do not know where I would be were it not for their advancements and painstaking care for human life. I do know that to have been a part of something so important and to have met and known some of those most outstanding individuals is an honor I hold dear.

Growing up sick wasn’t all bad. I could talk for days about the suffering I’ve felt in my body and my heart. Everything I struggled with growing up I still struggle with in my life today. Keeping friends is still hard, (partly due to my social anxieties and introverted tendencies) in that often I don’t want to hang out. I don’t want to text or socialize. I’ll feel tired and achy. Which is nothing against any of my companions, at that point it’s about me and really what I need. I’ve missed out on a lot of social events, field trips, school dances. I couldn’t have a job until after I completed high school, and even keeping up with that’s hard. It makes prioritizing a mandatory skill. Often I’ve taken things out of my schedule to make room for getting better physically and mentally. I’ve noticed how the cyclic part of my life has been prominent in my day to day obstacles as well as my blood cell production. It seems as if I will fall sick and have to drop everything that I’m working on, during which I fall behind on my life -school work, mostly, but also prominently I fall behind on my medications which result in even more pain and another cycle all over again later. By the time I feel better I have mountains of work to complete and a deluge of tasks, friends, chores, to catch up on. When these feelings of being overwhelmed completely shut me down, it feels like the hardest thing in the world to get even a chapter of homework done. So I spiral into the next phase of my emotional cycle which is just me not doing my work or taking my shot, because it scares me and I’m afraid if I attempt to pick myself up I will fail. It feels too hard. Eventually I do pick it back up and get my crap done, and it’s not ever been as dreadful and titanic as my mind says. Currently I’m working on the getting back up part. I just haven’t worked out how to get past that ending rut in a timely manner. Usually when I finally do get back in the swing I’ve missed out on even weeks of activities and important functions, which takes its toll. When I miss out on so much of life, my life, it hurts me. I wonder if I’m a real person or just a useless, needy sick person. Which I’m not. I’m not sick all the time even. Sometimes it’s like I don’t even have Neutropenia because I feel so healthy and strong (which can also make it all the more crushing when I hit my low cycle again). And I have to remind myself that it’s okay to have things in my life to overcome- everyone has them. When I’m not feeling cripplingly immobile, I’m confident that I will conquer them.

I have things I’m proud of as well. I’m proud to administer my own shot, something I had my parents do for me until I was seventeen years old. That was something I had to work to get past and I did. I’ve graduated high school on time, something teachers, deans and my parents were alternately unconvinced I would do. But I did. And I worked hard, even during the summers in order to get everything completed. I get so caught up in putting myself down and convincing myself I’m useless, when really I’m not and have never been. My disease does not make me any less of a human being, and it does not stop me from following through with my goals. When I was little I wanted to be a ballerina but was told I couldn’t because ballerinas couldn’t afford to get sick and miss rehearsals and recitals. So I didn’t become one. But I wish that I could tell myself how real and possible dreams are for even the chronically ill. I wish I could explain how endless the possibilities are, because I’m not limited. I’m full of joys and talents and capability. I weep for my childhood self, for the doubt I’ve felt toward me and who I could become. Now I open my arms and feel endless power and strength. I’m already more than I ever thought I could and would be, and I know my future is going to be even greater. I’m more than my disease, and I wish I could feel so all the time. Life confuses me more and more the older I get. I’m still trying to understand how there can be so much pain and suffering in the world, in one person, all at once. I use the terms “sometimes” and “I think” and “it seems” because they are not absolutes. I used to tell myself the only consistent thing in my life was inconsistency. Getting through a month is like being a dancer, pivoting and leaping to changes in my environment and how my body is feeling. Beyond my obstacles I will grow and I will flourish and maybe someday I will understand why things are the way they are. For now I’m still working on a number of things, but mostly I’m working on knowing I’m okay and that I’m good enough and that I am more than just Cyclic Neutropenia.  I am Olivia.

Lynda

41 Years ago I was told that my WBC was 1500. Today I am 65 and my counts range from 4.4 to 2.1.

I was five months pregnant with my second child when I was told that my WBC was at 1500 At this time I had my first bone marrow test done to determine if my bone marrow produced the proper number of white cells which,  it did. I was told that more than likely my count would return to normal after I gave birth. It did go up to around 4700 and stayed for a number of years before it began to drop again.

(When I was pregnant with my first child I was sick almost my entire pregnancy. Two days before I delivered him I saw a doctor that cared and said that nothing was consistent my whole pregnancy. Not sure what that meant, as we were in the Army at the time and I didn’t get my med. Records.)

The first doctor that I saw was a Dr. Fine, and then I saw a Dr. Goldfarb followed by Dr. Suresh Katakkar

I have also seen Dr. Richard Rosenberg and Dr. Michael Boxer, with AZ Oncology.

In January 2014 I began seeing Dr. Debra Wong, under Dr. Northfelt, at Mayo Clinic in Scottsdale; my hope was that I would get a doctor that specialized in Neutropenia. I was told that they don’t have any MD’s that specialize in Neutropenia.  Dr. Wong diagnosed me with Benign Idiopathic Neutropenia.  She had me going for CBC twice a week for several weeks. My count would range between 5.2 to 3.1. I have been as low as 2.1 at times.   These counts would be after taking 300 mcgs of Neupogen every other day for the 5 day span.   I no longer see Dr. Wong as her fellowship expired and I felt that I wasn’t being treating any different than any other Hematologist had treated me.

While under Dr. Katakkar’s care I was tested for many diseases and the test came back normal

I had blood work done and then went out and walked for twenty minutes and back in for more blood work to make sure my spleen was working and it was as my count would be higher

Dr. Katakkar, did a second bone marrow test about 18 years ago and it showed that my bone marrow was making the proper number of white cells.

About 7 years ago I saw a Dr. Linda Carl, a Rheumatologist and she was sure that I had Lupus or an arthritis and was amazed when I didn’t

When I was 6 years old I had all of the child hood diseases that year and it took me awhile to get over them, but over all I was healthy the rest of my childhood. Just a cold now and then.

I have tried Naturopaths also to find out what is happening to my Neutrophils and No one seems to be able to find that out.  I have been test for allergies to grains, and was told that I am allergic to most grains.  Wheat, corn, rye, barley, sugar, soy and coffee.  Soy is my worst. Try to find items without soy, good luck. So I mostly eat proteins, veggies, fruits and nuts. Very little gluten or even grains free items.  I eat very healthy and it makes a huge difference in my life.

I feel much better when I don’t eat any of them. They make me very lethargic, and I began to itch within 15 minutes of consuming them.

Thirteen years ago I started taking Juice Plus and eating as much organic products and grass feed beef that I could afford, and find.   I no longer get sick 5 – 6 months out of the year.

I have gone for regular lymphatic work and my legs will feel and look much better, and today I do a daily dry brushing which really help move the lymphatic fluids out of my body.  It has made a big difference in the fluid retention.

I have also worked with an acupuncturist; she helped with my energy level

I have been looking for answers for years and have not been able to find anyone that can give me any. Dr. Wong probably has given me more answers than anyone. I feel like I am not being treated for Neutropenia correctly, and more like a cancer patient.

I am so thankful that my lymphatic specialist suggested that I look into the NIH website to see what I could find about Neutropenia. I was elated to find NNN. Which lead me to the Severe Chronic Neutropenia International Registry.

I would love to finally meet a doctor that can give me answers and treat my Neutropenia. .

I have had blood work done twice a week for months and that does show that I am cyclic and my Neutrophil count ranges from as high as 1.4 and as low as 0.1.

I can tell when I think my count is getting low as I will get mouth sores, and fell more fatigued .  I now take L Lysine daily for the mouth sores, so I rarely get sores in my mouth, but I will get a sore in my nose now and still get very tired.

The past few Januarys I have felt sick around the 11th of the month and it will last for several days.  I don’t know if this is when my count is at its lowest, since this is around the time that my count will drop, but I feel like it is. This does not happen every month.

Dr. Wong wanted me to do Neupogen injections every other day for three days around the 25th of the month in the hopes that it will raise my count enough so it won’t drop so low. This is all well and good if in fact my count drops within the next five days.  (I take 300 mcg)  Dr. Rosenberg wanted me to take 480 mcg) I told him I would not take 480 mcg as it makes me dizzy and I begin to itch all over with  this amount of Neupogen.

In March of 2015, during my visit with Janet Bruce, my Absolute Neutrophils count was at 0.5 she suggested that I have a Neupogen injection. I agreed to do the injection that evening, on March 10, and I insisted on having blood work done for the next few days to see just how long my count stayed up.

March 10, 2015   – 0.5    took a shot this evening.

March 11, 2015   – 1.8     day after shot

March 12, 2015   – 0.8    2 days after shot

March 13, 2015   – 0.6   3 days after shot

I was not surprised at the outcome.

I had been told by Dr. Katakkar that the Neupogen should only be used if I had a major illness and need a surgery. That the Neupogen would only affect my count for as long as I was taking it.   No one had ever done a study to see just how it did affect my counts.

The Neupogen makes me hurt all over, and I am exhausted. This last for at least a week during the time of the injections of 3, 300 mcg every other night for five nights.  I was told to take an allergy pill and extra strength Tylenol before the injections. This will help a little with the allergic reaction that I have to the Neupogen, and it does.

So if I am lucky I have two really good weeks out of the month and this is beginning to suck.  I have asked what the Neupogen at this dose is doing to my body and if it’s not over work my system.  I am told I DON”T THINK SO…  I have asked not to be treated as a Cancer Patient ( of which  I am very thankful I don’t have a Cancer)  but all the Hematologist I have seen don’t know how to treat Neutropenia.   The last 10 years have been very trying as I know that I am aging and as we age we are more susceptible to disease and infections.  Well this is very frightening, and I can’t find anyone that seems to care or can give me answers…

I found out through the network that I should be taking smaller amounts of the Neupogen, but without a doctor to instruct me with this I am not taking Neupogen on a regular schedule.  I will take it when I feel that I am in trouble, which I am sure is harming me more. I am very fortunate that I stay healthy.

I work very hard to stay healthy, so therefore I do. However you never know what is around the corner.

I am so thankful that I have found the NNN and fell that I can finally get the answers I have been looking for, for years. I am so looking forward to finally meeting with a doctor at the convention in Ann Arbor, in July.