Benzene Leukemia Law Blog : Benzene and Leukemia Lawyer & Attorney : Burke & Eisner Law Firm : Benzene Exposure, Non-Hodgkins Lymphoma

The National Anemia Action Council (NAAC) has just unveiled their new interactive tutorial, Blood and Bone Marrow Basics, here's a brief description of  the tutorial, and the organization, a great resource for those struggling with bone marrow failure disorders:

Blood & Bone Marrow Basics is an interactive patient education tutorial which explains the different types of blood cells, describes how they are made, and discusses some of the different types of blood and bone marrow tests doctors can order. Learning about the many types of cells in the blood and their various functions can help patients better understand the purpose and results of blood and bone marrow tests.

Written for patients, the Blood & Bone Marrow Basics tutorial can be viewed for free online as a flash tutorial or can be downloaded and printed. NAAC partnered with the Aplastic Anemia & MDS International Foundation to create this patient education resource. The tutorial was released to help patients become more knowledgeable about the care they receive and to provide reliable resources for medical professionals to recommend to their patients.

NAAC is a nonprofit 501(c)(3) organization providing expert, in-depth information about anemia to medical professionals, patients, caregivers, students, researchers, writers and the media. Dedicated to raising awareness of the prevalence, symptoms, consequences, and treatment options of anemia through education, the organization offers many services on its website, www.anemia.org.
 

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Aplastic Anemia is a rare and debilitating hematological (blood) disorder that can be caused by exposure to benzene, a known carcinogen. Though life threatening, if detected early, the disease can be managed and even cured. The following article from aplasticamemiasite.com is a useful resource for those seeking a comprehensive overview of aplastic anemia treatment options.

Aplastic Anemia being a rare disease has led to many deaths mostly due to lack of early diagnosis. However, if the symptoms of the disease are discovered early enough, it is possible to either control or cure the disease completely. Just like any other disease, the severity of the condition determines the type of treatment to be undertaken. Cases of Aplastic Anemia could be severe, mild or moderate. Severe Aplastic Anemia requires that the patient be hospitalized for specialized treatment because it is life-threatening. In the initial stages of treatment, the patient may have to undergo blood transfusion as he or she awaits treatment. Different methods of treating Aplastic Anemia are available although the most commonly known standard methods are blood transfusion, bone marrow transplant and immunosuppressive therapy. These treatments can either be used with an aim of managing the disease for a considerable time or to completely cure the disease.

continue reading...

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An 18-year-old boy living in Napa Valley, California, had extra reason to be thankful this Thanksgiving. After a three month stay at Children’s Hospital of Wisconsin, Grant Beltrami recently received news that he is finally responding to the treatment he’s being given for aplastic anemia.

Stem cells have been donated to Beltrami as part of the advanced bone marrow treatment that is being given to him for this blood condition. Doctors reportedly found a bone marrow match for Beltrami from an anonymous woman living in Germany. And for the first time in more that a decade, Grant will begin to produce healthy blood. Although doctors say that he’s not cured, the signs are promising for his recovery.

“This is all pretty significant for us,” says Wendy Beltrami, Grant’s mother. “We’re feeling a lot of thanks for what is finally coming to an end.”

Boy Hopes to Return Home

According to reports, if Grant continues to make progress and his aplastic anemia begins regressing, he could be transferred out of the hospital by Christmas. They also claim that he may even get to move into the Ronald McDonald House with his parents while he continues to receive treatment. Doctors will continue to closely monitor Beltrami to ensure that his immune system doesn’t reject the new marrow at any point.

Unfortunately due to his aplastic anemia, which is a blood disorder that could prove to be fatal, Grant is missing his senior year at Napa High School. However, the Beltrami’s, did get to share a turkey feast for Thanksgiving that was put on by Ronald McDonald supporters.




 

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The National Heart Lung and Blood Institute reports that between 500 and 1,000 people develop aplastic anemia each year. Although researchers are consistently studying and analyzing the causes behind the condition, an effective treatment has yet to be found for all cases of aplastic anemia. However, recent news claims that Kyle Miller, a seventh-grader in Seattle could receive a blood transfusion that's the treatment doctors can often depend on.

 

Miller discovered that he had aplastic anemia while attending Yakima's Discovery Lab School, where doctors informed him he could have one of three diseases: leukemia, idiopathic thrombocytic purpura (ITP) or aplastic anemia.

 

How Does a Child Suddenly Get Aplastic Anemia?

 

Though there are treatments available for aplastic anemia, some of them are only effective upon the degree of the condition at the time of its diagnosis. And, doctors can't be sure that treatments are going to bring the patient back to complete health. There is no known cause for aplastic anemia or why Kyle Miller suddenly developed the health condition.

 

Aplastic anemia occurs when the bone marrow isn't able to produce a sufficient amount of blood cells in order to replenish healthy blood cells. Although Kyle's choices for treatment are limited at this point, there is one that doctors find to be the most dependable, a blood transfusion. The tricky part about getting a blood transfusion as treatment for aplastic anemia is that it is only effective if the donor has the exact same bone marrow and blood type as the patient. And in this case, Kyle seems to be a lucky boy because his fifteen-year-old brother Gavin is a perfect match.

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According to recent reports, the Aplastic Anemia & MDS International Foundation has awarded Vidaza a positive opinion for human use. The award was reportedly given to the European Committee for Medical Products for Human use (CHMP). The news is very pleasing and hopeful to patients who aren’t eligible to receive stem cell transplants to treat their illnesses.

The CHMP’s positive opinion for the use of Vidaza for human treatment is reportedly based upon data gathered from the AZA-001 trial, which demonstrated a higher survival rate for those with severe cases of myelodysplastic syndromes (MDS) and aplastic anemia. The Aplastic Anemia & MDS International Foundation is supposedly going to forward their approval to the European Commission. In doing so, the recommendation of Vidaza by the CHMP will be enabled to receive final marketing approval.

Reasoning Behind the Approval

 

“We are excited by Vidaza’s positive CHMP opinion because there are few treatment options for patients in Europe with this disease,” explains John Huber, Executive Director of the Aplastic Anemia & MDS International Foundation, “Vidaza not only extends patients’ lives, but also improves their quality of life. We are hopeful that Vidaza will receive marketing approval shortly and quickly be available for patients across Europe.”

 

Aplastic anemia is a rare condition where the bone marrow doesn’t produce sufficient new cells in order to replenish the blood cells. The aplastic Anemia & MDS International Foundation is committed to serving as a dependable resource for patient assistance and support. The organization provides patients and families with the latest medical information and funds to research and find cures for aplastic anemia and other related illnesses.

 

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An article in the current issue of John Hopkins Magazine describes a clinical trial in which high doses of cyclophosphamide were used to relieve symptoms associated with multiple sclerosis(MS).  The treatment is also referred to as "HiCy."  Treatment with low doses over a long term had been used since the 1980s but the treatment came with some pretty serious side effects.  The inflammation of MS was reduced but patients became susceptible to infection and tumors.  

Doug Kerr, a neurologist at Johns Hopkins, and colleagues Richard Jones and Robert Brodsky had used high doses given over a few days to patients with immune diseases such as lupus and aplastic anemia.  The treatment had reversed disease progression with minimal toxicity. The idea behind the high-dose treatment for MS was to knock out the infection completely and hope that the immune system would rebound and behave better.

Their idea seems to have worked.  Of the first nine patients they treated this way, seven had reduction in disability after  two years.  Twenty-nine patients, including Chris Young, have been enrolled in a second trial with similar results and no adverse effects.

In 2004 Chris Young woke up barely able to move his body on the right side.  He was 29 when he was diagnosed with MS and his disease got worse over the next few years. It was October of 2007 when he found out about the Hopkins clinical trial, called and was accepted for the study.

His short term memory was awful.  Lists didn't really help because he would forget where he put the lists.  Five days after the treatment he woke up and everything was clear.  Within a week of treatment he could stand in the bathtub without holding on and three months later he was walking without a cane.

"In most therapies for MS, the goal is only to make the disease slow down a little bit. Here, people actually got better," says hematologist and oncologist Douglas Gladstone of Hematology Oncology Associates of Western Suffolk, in New York. Additional research by Gladstone, who served a fellowship at Hopkins in the late 1990s, has also shown the effectiveness of HiCy on 14 MS patients. "This potentially represents a new standard of care," he adds.

Kerr said that the next step is to have a blinded clinical trial at multiple centers.  While he is encouraged by the results, he emphasizes the need for further study.  His team is also working on combination drug therapies to be used for those whose MS did not go quiet with the HiCy therapy.

 

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In May we wrote about a young man, 8 year-old Garrett Kaulbars, who had been diagnosed with Aplastic Anemia.  Garrett was fortunate to have a twin brother, Tanner, who was a perfect match for Garrett to have a bone marrow transplant.  The transplant  took place on May 27th and now Garrett waits and waits and waits.   What he really wants is to have seafood at the Red Lobster but that can't happen until after September 4th.

September 4th is Garrett's 100-day anniversary of his bone marrow transplant.  That is the date on which, if things continue to go well, he will be considered out of the woods and be allowed to do things  like going out for seafood.    After the transplant he stayed at the Ronald McDonald House until July 10th.  Since then he has been home but quite restricted.

“The only time he can leave the house is for doctor’s appointments,” said Becky West, the boys’ mother. “He’s doing remarkably well.”

Now he wears a mask, washes his hands a lot and takes lots of medications.  He can't go out for food nor can he enjoy take-out food because of the concern about food-handling and preparation.  His appetite is coming back and he loves vegetables, particularly broccoli and corn.   He will  have a bone biopsy to check how his immune system rebuilding is progressing.

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Garrett has an 8-year-old twin brother, Tanner.  Garrett also has Aplastic Anemia.  Aplastic Anemia is a rare, serious blood disorder in which the normal  production of blood cells - red, white and platelets - slows or stops.

Garrett is lucky to have an identical twin.  Few who are diagnosed with Aplastic Anemia have a healthy identical  twin  that they can turn to for a bone marrow transplant which can develop a new immune system.

Dr. Emad Salman, the youngster’s hematologist/oncologist at The Children’s Hospital at HealthPark in LeeCounty, has cared for thousands of children with blood disorders and cancer.

He said this is a first in his 11 years at the hospital.

“This is the first time I’ve seen a child who needs a bone marrow transplant who has a twin brother who will be the donor,” he said.

In preparation for the transplant Tanner was given iron pills to boost his red blood cell count and Garrett started chemotherapy to wipe out his immune system and be ready to start a new one.

Researchers are fascinated as to why only one of the twins became sick and not the other.  Tanner spent a few days in the hospital while they did the blood draw.

“It’s going to suck,” Tanner said.

“Because he has to get poked,” Garrett explained about his brother’s blood draw for his bone marrow. “I get one but I’m going to be asleep. Hah.”

 

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In Cave City, Scotland Pam Hunt, now 60 years old, has never let her diagnosis of Aplastic Anemia get her down or limit her activity. She was diagnosed originally with leukemia but after a bone marrow test was diagnosed with Aplastic Anemia. At that time she was 15 years old. Her treatment was to get transfusions every two weeks.

She was told to limit her activities, not to play sports, not to become pregnant because of the risks of injury and internal bleeding. She ignored the warnings and is a living example of how one's attitude can play a part in how to deal with a diagnosis like hers. After her daughter was born she played softball, went fishing and boat riding. Even today she can put in a 12-hour day but is ready for bed when she gets home.

“The specialists and all the doctors told me that, with aplastic anemia, the top age of an adult would probably just be 35 to 40 years old,” Hunt said. “I never paid any attention to all that and that’s been the success to my survival. I don’t think about years or minutes or days or hours. I just wake up and do my thing and thank God that I’m here to do it.”

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Science advances and Treatments improve.  Here's what US News and World Report has to say.

But there's hope: Considered fatal as recently as two decades ago, aplastic anemia is becoming a far more manageable disease. Advances in drug therapies and improvements in the field of transplantation have slashed the death toll, allowing patients to live longer, fuller lives.

"We are getting better at treating aplastic anemia, either in getting rid of it or treating its symptoms," said Dr. Jaroslaw P. Maciejewski, with the Cleveland Clinic's Department of Hematologic Oncology and Blood Disorders.

Source:  USNews and World Report:  Aplastic Anemia

 

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This blog posts questions whether Procrit is effective for Aplastic Anemia Treatment:  Obviously please make your own decision with your doctor.

Is aranesp considered medically necessary for aplastic anemia?

Erytropoietin levels are elvevated in apalstic anemia patients. This raised the probability that additional exogenous erythropoietin may not be effective. However, despite the same concern, erythropoietin is effective in  in myelodysplastic syndrome. I reference a Japanese editorial that advocated the use of erythropoietin ( and this would include darbepoetin) for aplastic anemia.

Source:  Aplastic Anemia Treatment and Procrit

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Bone marrow transplants continue to be an important Aplastic Anemia Treatment.  If you are in Canada, read this article.

A better chance to find a match
Blood donors can now register online, use mail-in swab kits
By JOHN GILLIS Health Reporter
Fri. Feb 29 - 7:11 AM

FINDING A match for a person who needs donat­ed blood, cells or mar­row can be like finding a needle in a haystack.

Now potential donors can better a sick person’s odds without getting needles them­selves.

At Canadian Blood Services’ new website onematch.ca, peo­ple can register to be donors and be mailed a cheek swab kit. Donors can then take swabs and mail them back to have their DNA entered in a data­base.

Each new registrant could be a match for a person any­where in the world. Sue Smith, executive direc­tor of the OneMatch Stem Cell and Marrow Network, said it’s especially important that peo­ple from different ethnic com­munities join the registry.

“The face of Canada is changing dramatically," she said in a news release. “The more diverse One­Match is, the better the odds to save lives."

While Caucasians in Canada who need stem cell transplants have about a 75 per cent chance of finding a donor, aboriginal, black, Chinese, South Asian and Filipino Canadians don’t stand as good a chance because there aren’t enough available donors from those communi­ties.

It is more likely a donor will come from a person’s own com­munity.

Ifeoma Obi, who immigrated to Canada from Nigeria, has sickle cell disease and requires regular blood transfusions.

“I want to personally thank people for helping me enjoy a better quality of life," Ms. Obi said in a release.

“And I want them to encour­age their friends and family to become blood donors so that they too can save a life like mine."

People with sickle cell or aplastic anemia need donors who are precisely matched.

Canadian Blood Services, the Health Association of Afri­can Canadians and the United African-Canadian Women’s Association Sickle Cell Ane­mia Project held a special clin­ic Thursday to attract donors.

Source:  NovaScotiaNews.com

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A study recently released says it now knows where stem cells originate.    Why is this important in the treatment of Aplastic Anemia?  If doctor's and researchers know where the body creates stem cells, then they can try to recreate that environment and grow stem cells in a lab.  Do that and you have a treatment option for Aplastic Anemia.

Here's the article:

FRIDAY, March 7 (HealthDay News) -- Blood stem cells, which later differentiate into all types of blood cells, originate and are nurtured in the placenta, a U.S. study finds.

This finding may help researchers replicate the specific embryonic microenvironment necessary to grow blood stem cells in the lab so doctors can treat patients with diseases such as leukemia and aplastic anemia, said senior author Dr. Hanna Mikkola, a researcher in the Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at the University of California, Los Angeles (UCLA).

"It was a big mystery, where these cells originated. This is the first time we can really say definitively that blood stem cells are generated in the placenta. There's no more speculation," Mikkola said in a prepared statement.

The discovery, reported in the March 6 issue of Cell Stem Cell, was made in research with mice. The researchers are now working to replicate it in humans.

"If we want to fully harness the potential of embryonic stem cells to treat disease, it's critical for us to learn how to make tissue-specific stem cells. We can learn that by studying what happens during embryonic development," said Mikkola, an assistant professor of molecular, cell and developmental biology and a researcher at UCLA's Jonsson Comprehensive Cancer Center.

In previous research, Mikkola and her colleagues found the placenta contained a large supply of stem cells, but the researchers weren't sure if these stem cells were created in the placenta or originated elsewhere and migrated to the placenta to self-renew.

In this new study, Mikkola's team examined a unique mouse model, a mouse embryo without a heartbeat. Because there was no blood circulation, the researchers were able to find the blood stem cells at their point of origin in the placenta.

"Using this model, we identified that the placenta has the potential to make hematopoietic [blood] stem cells with full differentiation ability to create all the major lineages of blood cells. The placenta acts as a sort of kindergarten for these newly made blood stem cells, giving them the first education they need," Mikkola explained.

Source:  USNews.com

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Was reading a blog post about Aplastic Anemia Treatment.  It is a pretty good post with general information on treating Aplastic Anemia. 

The treatment of aplastic anemia was considered once as impossible ones. But, currently many therapeutic applications are available for the affected persons like transfusion of blood or bone marrow replacement together with appropriate medications. Platelet transfusion also helps the treatment.

Iron chelation therapy is undertaken when repeated transfusions of red blood cells are given. However, it needs a periodical monitoring of blood status.

...

In general, stress free life with good feeding with enough protein and fiber help to prevent the disease of aplastic anemia.

The only negative comment I have is concerning the idea that if you lead a stress free life that it will help in preventing aplastic anemia.  That seems overly broad.  I think that if we lead a stress free life it will help a lot of things, but I don't know about preventing aplastic anemia.

Source:  Alvin Soong's Blog

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Cord Blood Stem cells are probably not going to be available to Aplastic Anemia victims who have AA because of benzene exposure.  But this press release does indicate the value of using stem cells in attempting to treat Aplastic Anemia.

The analysis examined transplant recipient data from 16 cases of nonmalignant blood disorders. Four of the patients were infused with their own cord blood stem cells to treat aplastic anemia, an acquired condition. Twelve patients were transplanted with cord blood stem cells of a sibling for a range of inherited conditions including, thalassemia, sickle cell anemia, Fanconi anemia and Hurler syndrome.

The review showed that two-thirds of the patients (10) are either cured or in remission, including half of the patients treated with their own cord blood. Three patients died of complications unrelated to their cord blood transplant; one patient experienced a relapse; and the outcomes status of two patients is not known.

Source:  Business Press Release from the Cord Blood Registry

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