Tag Archive | Granulocyte colony-stimulating factor

Girl With Rare Blood Disorder Works to Inspire Others

Kara Loader is just like any sixth grade girl. She’s been playing the violin for seven years, loves softball, and says she’s really good at school. She’s a huge Taylor Swift fan, and she has a lot of friends. But something sets Kara apart from her friends and classmates, though it’s nothing you’d be able to see on the outside.

11-year-old Kara has been battling severe congenital neutropenia since birth. Neutropenia is a rare blood disorder, meaning her body doesn’t make enough neutrophils in her white blood cells. So when Kara gets sick, or even gets a cut, her body may not fight off the infection as quickly. 

Kara has to be extra cautious and carry a medical kit with her at school, and when she gets really sick, Kara visits a hematology and oncology specialist at the Cleveland Clinic. She takes a shot of neupogen every day, which helps her build her neutrophils. However, she has to watch how much she takes, because the drug increases the risk of developing leukemia.

Kara has become a bit of a celebrity of her own in the neutropenia community. She said her video inspired a woman in her 30’s to talk about the disorder for the first time .”She always thought that it wasn’t okay, like, it wasn’t normal to tell people that you actually have it. And she said that my video actually gave her the courage to tell it to other people,” Kara said.

Kara said she has one message for anyone else battling neutropenia: “I would tell them everything’s going to be okay.” Kara and her family remain in contact with families they have encountered in the hospitals and at a yearly conference for neutropenia.

Ariana-Leilani also has suffered from neutropenia.   Sign her petition to assure she gets proper treatment and protection from abuse.

Read more: Kara Loader

 

Reducing GCSF Increases Incidence of Neutropenia

Hematopoietic growth factors

Hematopoietic growth factors (Photo credit: Wikipedia)

A study involving 167 patients was published in the December 1 issue of the Journal of Clinical Oncology and reported that when the use of prophylactic granulocyte-colony stimulating factor (G-CSF) to reduce febrile neutropenia (FN) was decreased in patients receiving chemotherapy for breast cancer, it led to a more than 5-fold increase in FN episodes and an early end to the clinical trial.

In an accompanying study, Dr. Aarts’s research team evaluated the cost effectiveness of pegfilgrastim prophylaxis for FN. They conclude that skipping G-CSF after the first 2 chemo cycles saved an average of €3491 per patient. They estimate that nationwide, this would translate into a saving of €14.3 million each year.

However, this resulted in an unexpected and substantial increase in FN incidence. The researchers calculate that the incremental cost-effectiveness ratio for preventing an FN episode by giving G-CSF with every chemotherapy cycle, compared with only for the first 2 cycles, worked out to €13,112 per patient.

“When one is willing to pay at least €13,122 per patient with FN episodes prevented, 6 cycles of G-CSF prophylaxis is considered a cost-effective strategy,” they conclude.

Read More: Medscape

G-CSF Prophylaxis Recommended

English: pink ribbon

 

Dutch team is recommending the continued use of primary granulocyte colony-stimulating factor (G-CSF) prophylaxis throughout all chemotherapy cycles in women with early breast cancer who are at high risk of febrile neutropenia (FN). At present, the approach is standard practice in this population.

 

Read More: G-CSF Prophylaxis Recommended Throughout Chemotherapy in Breast Cancer Patients at Risk for Febrile Neutropenia

 

Great Children’s Book: “The Day the Sun Promised to Smile FOREVER!,” Dedicated to Ariana-Leilani

NOW AVAILABLE IN GERMAN:

Get a Great Children’s Book for the children in your life.  “The Day the Sun Promised to Smile FOREVER!,” tells the story of the Sun who forgets why he is so important for others, and only finds out when he encounters Little Leilani.

The book is beautifully illustrated by Conny Hermann, with the words of poetry by Dumi Senda.

Order online today: (ENGLISH)  OR GERMAN

The Day the Sun Promised to Smile Forever for Ariana-Leilani
Dedicated to Ariana-Leilani, by Dumi Senda and Conny Hermann, for the Benefit of Innocense in Danger Children’s Camps.
You can be the “Sun” for Ariana-Leilani to help make her better by signing her petition, today:

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Colony-Stimulating Factors for Febrile Neutropenia

Responses of the Authors:

Ishiguro and Toi and Kelly et al. question the wisdom of universal adherence to the 6-mg, fixed-dose formulation of pegfilgrastim currently approved by the Food and Drug Administration. Citing the pharmacokinetic data and preliminary clinical data, Ishiguro and Toi suggest that the most appropriate dose in Japanese patients should be 3.6 mg per cycle of chemotherapy and not the currently approved dose of 6 mg per cycle. Kelly et al. justifiably raise the issue of costs associated with the administration of CSF. They cite a small, nonrandomized, preliminary study suggesting that half-dose pegfilgrastim may be as effective as the standard 6-mg dose and potentially associated with less pain. Although we are sympathetic to these arguments, we also think that larger and more definitive studies should be conducted before the current package label is changed.

Buti et al. raise the issue of discrepancy in the literature, with some meta-analyses showing no effect of CSF on rates of infection-related death and overall survival, whereas others apparently do. Many factors can lead to discordant meta-analyses,1 the most common being the number and type of the studies selected for the meta-analysis, as Buti and colleagues indicate. The studies by Kuderer et al.2 and Lyman et al.3 showing that the use of CSF is associated with reduced mortality were more selective in scope and included far fewer patients and studies than did more comprehensive meta-analyses showing no such association in the context of either prophylaxis4 or treatment.5

Carton et al. outline a rare, but important, complication related to the management of breast cancer during pregnancy and provide their rationale for why the use of CSF should be avoided in pregnancy.

Benjamin Djulbegovic, M.D., Ph.D.
University of South Florida, Tampa, FL

LeAnn B. Norris, Pharm.D.
Charles L. Bennett, M.D., Ph.D.
University of South Carolina, Columbia, SC
bennettc@sccp.sc.edu

Read More: GCSF

2014 Neutropenia Conference Announced by National Neutropenia Network

The 2014 Neutropenia Family Conference is set for July 11-13 at the beautiful Marriott Eagle Crest in the Ann Arbor Michigan area. Registration will officially open in January 2014. 

Program descriptions and agendas will be posted early next year. It is important to note that the conference will include the most popular features and sessions from past conferences including:

  • One-on-one meetings with the experts
  • Breakout sessions according to disease categories
  • Pain management
  • Dosing basics
  • Primer on Neutropenia
  • Oral Hygiene
  • Facilitating Networking
  • Patients Only Support Session
  • Kids Camp

In addition to the above programs some new ones will be added.

For More Information: 2014 Neutropenia Conference

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President Obama at Georgetown University, Only Steps Away from Helping Ariana-Leilani

President Obama went to Georgetown University to give a speech.   He was there to talk about society taking on the difficult issues that are otherwise ignored.   Georgetown University, which is ground zero for the foreign relations community and the intelligence community’s center for medical experimentation, is where Ariana-Leilani is being denied life saving medicine, GCSF (neupogen), for her diagnosed Severe Chronic Neutropenia — a low immunity condition that leaves her vulnerable to fatal infections.   Without GCSF to boost her low immunity, world experts, like Dr. Dale of the Severe Chronic Neutropenia International Registry (upon which Ariana-Leilani is listed), say that she can suffer from loss of limb and loss of life.    Unfortunately, President Obama’s administration has failed to take action to require that Ariana-Leilani’s life be saved, even though his administration is well aware of the situation and has even cooperated in allowing the continued immoral and illegal medical experimentation on Ariana-Leilani.   President Obama’s administration must walk the walk, and not just talk the talk in order to save Ariana-Leilani’s life.Pres-Obama at Geoergetown 25 June 2013

Obama at Georgetown University 25 June 2013 Obama at Georgetown 2 - 25 June 2013

Make sure President Obama hears you .. sign her petition: 

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Dr. Ariel King, On Media Tour Interviews to Save Ariana-Leilani

Ariana-Leilani and her mother Dr. Ariel King

Ariana-Leilani and her mother Dr. Ariel King

Dr. Ariel King, Mother of Ariana-Leilani, has taken to the airwaves to inform the world about Ariana-Leilani’s condition, and what needs to be done to get her relief.  Visit the media page for the latest listings of her appearances.

Ariana-Leilani In the News

Sign the petition to Save Ariana-Leilani: 

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On the Air: The Word of Ariana-Leilani’s Call for Help Is Being Heard

The story of Ariana-Leilani’s plight continues to spread.    Two recent radio programs that featured her story and call for help:

Listen how Ariana-Leilani is not getting needed medicine for her neutropenia, then please sign her petition:

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Tips On Care For a Patient with Neutropenia

Ariana-Leilani is not getting needed medicine for her neutropenia, please sign her petition:

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