Category Archives: Lymphoma / Leukemia / Myeloma

Son of Miami-Dade Police Officer Battling Leukemia, Needs Bone Marrow Transplant – NBC 6 South Florida

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Members of the community came out Thursday to help the son of a Miami-Dade Police officer who’s battling Leukemia.

Two-year-old Alex needs a bone marrow transplant and is looking for a potential donor who is a match.

Looking to help, people filed into the Miami Beach Police Department Thursday to get tested by OneBlood, to see if they could be a match for Alex.

OneBlood will be looking for donors for Alex all month. If you are between the ages of 18 and 44, get tested and see if you can help. Click here for more info on donating.

Bone marrow transplant patients report better quality of life compared to peripheral blood transplant recipients … – Science Daily

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A large, nationwide study published in the journal JAMA Oncology found that people who received transplants of cells collected from a donor’s bone marrow ― the original source for blood stem cell transplants, developed decades ago ― had better self-reported psychological well-being, experienced fewer symptoms of a common post-transplant side effect called graft-vs.-host disease and were more likely to be back at work five years after transplantation than those whose transplanted cells were taken from the donor’s bloodstream.

“We’re hoping that once we provide information about long-term quality of life and recovery, patients and their doctors can take this into account when they’re planning their transplants,” said lead author Dr. Stephanie Lee of Fred Hutchinson Cancer Research Center. She noted that the results would only be applicable to transplant patients who are similar to those enrolled in the trial. The study also showed that there was no difference in overall survival, treatment-related death or relapse between the two groups of study participants. Lee said that this result would reassure the many patients for whom survival is the top concern.

“There are many ways to do a transplant. Choosing a source of stem cells is just one decision. But anything that improves the success of transplant can help future patients,” she said.

The study included 551 people between age 16 and 66 with leukemia or certain other blood malignancies who needed to receive a transplant of blood-forming stem cells from an unrelated donor. The patients were randomly assigned to one of the two types of transplants. From 6 months to five years after the transplant, study researchers called the participants periodically to assess how they were doing.

The researchers found that people whose transplanted cells were derived from their donor’s bone marrow were more likely to report better psychological well-being others than those assigned to receive the stem cells from circulating, or peripheral, blood. They were also much more likely to have returned to at least part-time work than their counterparts in the bone marrow transplant group.

“Results of this study set bone marrow as the standard source of stem cells for transplantation from unrelated donors” said Dr. Claudio Anasetti, senior author of the study and chair of the Department of Blood and Marrow Transplantation at Moffitt Cancer Center.

The researchers suspected, but could not confirm, that these patients had better emotional well-being because they also experienced fewer self-reported symptoms of chronic graft-vs.-host disease, or GVHD, and had fewer side effects from GVHD treatment. Chronic GVHD is a common transplant complication in which transplanted immune cells turn against the patient’s healthy cells, causing symptoms such as a debilitating thickening of the skin and permanent loss of lung function.

This condition is a major focus of Lee’s research as research director of Fred Hutch’s Long-Term Follow-Up Program, which provides lifelong monitoring and care of transplant patients, and as leader of a national research consortium on chronic GVHD.

The study led by Lee is the latest example of the decades of research by many scientists that has continued to improve bone marrow transplantation and related forms of blood stem cell transplantation by boosting the therapy’s success rates and decreasing toxicity.

“When both your disease and the recommended treatment are life-threatening, I don’t think people are necessarily asking ‘which treatment is going to give me better quality of life years from now?'” Lee said. “Yet, if you’re going to make it through, as many patients do, you want to do it with good quality of life. That’s the whole point of having the transplant. It’s not just to cure your disease but also to try to get back to as normal of lifestyle as you can.”

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The above post is reprinted from materials provided by Fred Hutchinson Cancer Research Center. Note: Content may be edited for style and length.

Medicare should cover costs for marrow donor/cord blood transplants like solid organs – The Hill (blog)

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Many of us have never been touched by blood diseases. But tens of thousands of Americans diagnosed with leukemia and lymphoma each year are not so lucky. Those individuals—as well as their friends and loved ones—understand the ceaseless struggle with disease. They understand the heroism of survivors. And, with heavy hearts, they too often understand the sadness that accompanies loss of life.

Fortunately, there is more hope than ever for those facing blood disease diagnoses, and the primary reason is increased access to bone marrow and cord blood transplants. As a physician and the CEO of National Marrow Donor Program® (NMDP)/Be The Match®, I have witnessed great progress in the treatment of these diseases. Since our organization’s Be The Match Registry®was created by an act of Congress almost 30 years ago, our organization has facilitated more than 74,000 life-saving transplants. Thanks to the selflessness of donors in the United States and around the world our reach continues to grow; Be The Match now stands ready with more 27 million potential marrow donors and 680,000 cord blood units to deliver to patients in need.

Despite this, one of the greatest challenges facing the program today is ensuring that patients in need of a transplant can actually access one. That’s because flawed Medicare payment policies often hamper the true effectiveness of our nation’s transplantation infrastructure, putting vulnerable Americans with blood diseases at risk. While we have seen steps in the right direction in recent weeks, we have also been disappointed by the failure to act. And our nation’s policymakers must go even further to make critical changes in reimbursement if patients are to have the treatment they need.
Let’s start with the positives. The Centers for Medicare & Medicaid Services (CMS) recently unveiled its proposed hospital outpatient prospective payment system (HOPPS), which would increase Medicare reimbursement to partially address the deficits marrow and cord blood transplant centers incur in providing transplants in the outpatient setting. 

I cannot emphasize enough how important these measures are and how vital it is that they are finalized later this year.  That’s because—despite the fact that marrow transplants often represent a patient’s last hope—there is a chronic, almost unthinkable underfunding among bone marrow and cord blood transplant centers for Medicare beneficiaries seeking life-saving transplants. In fact, the current outpatient reimbursement formula does not even consider the cost of the marrow or cord blood acquisition in setting reimbursement. These costs alone can easily reach $45,000 or more.

The proposed HOPPS rule is a vital change that will provide a positive pathway to address underfunding.  Among a number of changes, it reclassifies transplants in the outpatient setting, increases the payment rate nearly five-fold, and demands clear reporting for acquisition charges, including NMDP fees, human leukocyte antigen (HLA) typing, donor evaluation, collection of cells and other costs.  The last is especially important as it will allow CMS to assess the costs and gauge how well the payment reflects the costs of providing these services.

But the improvements contained in the proposed outpatient rule will still significantly underfund the cost of a transplant in that setting. More important, the vast majority of allogeneic transplants are still done in the inpatient setting. Unfortunately, CMS released a final rule in early August for the inpatient prospective payment system (IPPS) that retains the current flawed reimbursement system without explanation for the omission of bone marrow and cord blood transplants reimbursed in the inpatient setting, which is where the vast majority of these transplants occur.  Without resolution to this serious problem, patients 65 years and old are at risk for not being able to access life-saving transplants simply because of their age and type of insurance.

For those of us in healthcare, we understand that when the numbers do not add up, especially to this extent, limited access is the unfortunate result. But this just will not do—not when the stakes are this high.  Not when transplant represents a patient’s last chance at survival.

I commend CMS on its work on the HOPPS Proposed Rule, and I urge the Agency not only to finalize the rule, but to also continue working on behalf of patients to eliminate barriers to transplant in the inpatient setting.

CMS needs to make robust changes to payments in all settings, as vast differences in the cost of care and rate of reimbursement persist. This also means addressing narrow networks and ensuring that patients can access transplant options in a timely, convenient and cost-effective manner.  And it means reworking payment policies so older Americans will know whether or not Medicare will pay for their transplant. 

Our nation’s transplant infrastructure has made incredible progress since 1987. Let’s keep moving forward, first with changes to the HOPPS, next with similar reforms in the inpatient setting, and then with more meaningful reforms in years to come.

CEO of National Marrow Donor Program® (NMDP)/Be The Match®. The National Marrow Donor Program (NMDP)/Be The Match is the global leader in providing a cure to patients with life-threatening blood and marrow cancers such as leukemia and lymphoma, as well as other diseases. The nonprofit organization manages the world’s largest registry of potential marrow donors and cord blood units, connects patients to their donor match for a life-saving marrow or umbilical cord blood transplant, educates health care professionals and conducts research through its research program, CIBMTR® (Center for International Blood and Marrow Transplant Research®),so more lives can be saved. NMDP/Be The Match also provides patient support and enlists the community to join the Be The Match Registry®, contribute financially and volunteer. To learn more about the cure, visit or call 1 (800) MARROW-2.

The views expressed by authors are their own and not the views of The Hill. 

Florida Hospital partners with Duke to expand bone marrow transplant program – Orlando Sentinel

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Florida Hospital for Children announced on Friday that it is expanding its existing bone marrow transplant through a new affiliation with Duke Pediatric Blood and Marrow Transplant Program.

“I came to Florida Hospital for Children with a vision of building a world-class transplant program for the people not just of Central Florida, but of the entire state,” said Dr. David Shook, medical director for the hospital’s Pediatric Bone Marrow Transplant program, in a news release. “By leveraging the vast resources of Duke Health, we’re one very large step closer to making that a reality.”

As an affiliate, Duke Health with provide Florida Hospital with advisory and operational support services, including business development, quality oversight and education and training. 

“We have been working toward this affiliation for some time and are thrilled to see it become a reality,” said Dr. Joanne Kurtzberg, director of the Pediatric Blood and Marrow Transplant Program at Duke, in a news release. “We see this as a way to extend the innovative treatments developed at Duke to children in the state of Florida through Florida Hospital’s visionary program.” 

Earlier this year, Arnold Palmer Hospital for Children announced that it’s opening a bone marrow transplant program with a $5 million gift from local a philanthropist.

Stem cells in the bone marrow help the body remake its immune system, especially after the patient receives high doses of chemotherapy or radiation. Bone marrow transplants can be used for several pediatric cancers including neuroblastoma, lymphoma, leukemia, blood disorders where traditional chemotherapy hasn’t worked, and sickle cell disease.

Alexandria boy needs bone marrow transplant –

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ALEXANDRIA, Va. (WUSA9) — An 11-year-old Alexandria boy is battling a rare form of Leukemia. To beat it, he needs a bone marrow transplant, sooner rather than later.

Jack Creedon was diagnosed with acute lymphoblastic leukemia (LLS) in November of 2015 and underwent traditional chemotherapy. His body, however, did not respond to the treatment as well as doctors hoped.

It became clear that the cancer was living in his bone marrow.

“Every day something else comes up that just sets you back,” said Jack’s father, Dan Creedon.

Jack’s parents said it has been tough to find a match. In part because Jack, like his sister, was adopted from a Russian orphanage. So his own family members are not genetically compatible. Moreover, his biological parents, who are Eastern Europeans, are underrepresented in the international bone marrow registry.

“You think that coming from a Siberian orphanage with no care the first 12 months of your life that once you get beyond that things are going to get better,” said Jack’s mom, Lesli Creedon. “You never expect that the next thing that happens is something like this.”

RELATED: Va. boy needs a bone marrow transplant

Having had what promised to be two donors lined up, Jack had a “central line” inserted through his chest and up into his neck. That is where the donor’s bone marrow would have been pumped into him.

Even though both donors fell through for unknown reasons, the line remains. According to Jack’s dad, it was an invasive procedure and it is not worth putting Jack through that again.

“He’s really old enough to understand the risk,” his dad said. “And to try and keep his spirits up has been the most painful.”

Jack has been through about a dozen spinal taps, the procedure that doctors use to monitor the leukemia growth or lack thereof. The sooner Jack finds a match, the more likely it is that this boy will accept the donor’s bone marrow.

His family tried to call attention to his illness using social media. Watch the #Heroes4Jack video here

In the meantime, his sister serves as a nurse — helping clean his central line — and as a best friend. The pair are only 12 days apart.

Jack and his parents want people to consider donating bone marrow. Even if you are not a match for Jack, you could help save someone else’s life.

Anyone can support the cause to help Jack and others affected by LLS by visiting Be the Match.

Va. boy needs a bone marrow transplant –

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ALEXANDRIA, VA. (WUSA9) – An Alexandria, Va. boy is in desperate need of a bone marrow transplant.

Eleven-year-old Jack Creedon was diagnosed with acute lymphoblastic leukemia (LLS) in November of 2015. But now, even after several attempts to find matching donors, only one donor remains compatible and Jack’s chances for survival depend on the number of matches. 

Typically, family members are go-to donors, but Jack’s case is different.

Jack was adopted from Russia when he was 18 months old. As if bone marrow transplants are not complicated enough, Jack’s situation is even more involved because his family members are not genetically compatible.

Lesli and Dan Creedon, his parents, decided to search for a donor using the international bone marrow registry. The system houses approximately 30 million potential donors. Bone marrow can be removed and transported to patients across the world for next day transplants.

The registry found only two compatible donors for Jack, one of which did not pan out. The Creedons, however, are not discouraged.

“We are anxious but optimistic. Living in uncertainty of ANY kind is stressful even if you don’t realize it,” Lesli responded. “Jack is ready to find a donor, have the transplant and get it over with! He understands his disease and…has been remarkably strong and positive despite the limitations he has had.”

Jack has been the focus of two major LLS campaigns, one for Student of the Year and the other launched by Christine Thayer’s Woman of the Year program.

He also completed the fifth grade using a robot that allowed him to digitally interact with his class at Charles Barrett Elementary School in real time.

Jack’s family remains resilient too.

Lesli Creedon has called attention to her son’s cause through a broad range of social media platforms. The #Heroes4Jack video can be viewed here.

Recently, the family has inspired a series of “swabbing” events. Over 40 locals flocked to St. John the Baptist, a Russian Orthodox Church in the District, to swab their saliva for DNA compatibility testing. Coworkers of Lesli’s at the National Zoo and of Dan’s at the Federal Aviation Administration also joined the swabbing efforts.

Jack has been a fighter for the past seven months and intends to continue fighting. Despite his roadblocks, his infectious sense of humor is unwavering.

Anyone can support the cause to help Jack and others affected by LLS by visiting Be The Match.


New treatment approach may benefit relapsed post-transplant blood cancer patients –

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For many patients with advanced blood cancers, a stem-cell transplant can drive the disease into remission. However, about one-third of these patients experience a relapse and face a very poor prognosis.

But a Dana-Farber Cancer Institute study published in the New England Journal of Medicine suggests that a new treatment approach, using repeated doses of an immunotherapy drug, can restore a complete remission for some patients in this predicament. This strategy could potentially prevent such relapses in the future.

An immune checkpoint-blocking drug approved for metastatic melanoma, ipilimumab, was given to patients with relapsed hematologic malignancies in an effort to revive the tumor-fighting powers of the donors’ transplanted immune systems. A weakening of the transplanted immune response over time is believed to allow the cancers to recur.

The patients received varying doses of ipilimumab repeatedly for up to one year. Ipilimumab blocks an immune checkpoint, CTLA4 that helps cancer cells evade the immune defenses.

“We believe the donor immune cells are present but can’t recognize the tumor cells because of inhibitory signals that disguise them,” said Matthew Davids, MD MMSc, a member of the Division of Hematologic Malignancies at Dana-Farber and first author of the study. “By blocking the checkpoint, you allow the donor cells to see the cancer cells.” Ipilumumab has been used primarily in treating advanced melanoma, but in the new study, it proved effective for blood cancers in the post-transplant setting.

A total of 28 patients with relapsed leukemia, lymphoma, multiple myeloma, and myelodysplastic tumors were enrolled in the multicenter phase 1, investigator-initiated trial.

Among the 22 patients who were treated with the highest dose of ipilimumab, five had a complete response, meaning the cancer was undetectable, and two patients had a partial response, with the tumors shrinking. Six others, who did not qualify as having responses, nevertheless had a decrease in their tumor burden.

Altogether, ipilimumab therapy reduced cancer in 59 percent of the relapsed patients.
Among the complete responders were three patients with a hard-to-treat form of leukemia that affects the skin. Such “extramedullary myeloid leukemias,” which aren’t confined to the bone marrow and typically don’t respond to standard therapies, may be particularly sensitive to checkpoint-blocking drugs, the authors noted.

Because checkpoint-blocking drugs like ipilimumab rev up the immune system by releasing molecular brakes that restrain T cells, there was concern that the treatment could stimulate graft-versus-host disease (GVHD), a serious transplant complication, along with its graft-versus-tumor effect.

“But we didn’t see that,” said Davids. Only four of 28 patients developed GVHD that prevented further treatment, and they all responded to corticosteroid drugs which controlled the GVHD. Six other patients had adverse effects typical of ipilimumab treatment, and one patient died from an immune-related adverse event.

The investigators said the encouraging results have set the stage for larger trials of checkpoint blockade in this population of relapsed post-transplant patients. Further research is planned to determine whether immunotherapy drugs could be given to high-risk patients to prevent relapse.


Dana-Farber Cancer Institute

Luling boy receives bone marrow transplant – WDSU New Orleans

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It’s been a tough road for 9 year-old Chad Grosch.

Diagnosed with leukemia in 2014, he appeared to have beaten the disease by spring of the following year.

“I kicked cancer’s butt!”, declared Chad as he took his last chemotherapy treatment in April of 2015. Chad and his family were exuberant.

But just months later, their worst of their fears were realized. Chad’s cancer had returned. When various treatment options were unsuccessful, the search began for a bone marrow donor match. After months of looking and waiting, a match was found. Chad underwent a bone marrow transplant at Children’s Hospital in New Orleans April 27.

With his immune system substantially weakened, the door to Chad’s hospital room remains closed to everyone except doctors, nurses and family.

“We’re just taking it minute by minute, day by day,” said Chad Grosch, little Chad’s father.

Doctors at Children’s Hospital continue monitor Chad closely, but are pleased with the transplant and his progress so far.

“A very good match for a bone marrow transplant, a very good donor, so we’re fortunate. Definitely not all kids have perfect matches like he did,” said Dr. Dana LeBlanc, pediatric hematologist-oncologist at Children’s Hospital.

“He’s doing pretty good. He’s pretty sick and kind of not feeling well, but right now we really need some platelets. That’s kind of the main thing that’s kind of happening to him at the moment,” added Chad’s father. 

Nothing is more critical for Chad and kids like him recovering from bone marrow transplants than blood and blood platelets. Because of the intense chemotherapy leading up to the procedure, Chad cannot make his own platelets and red blood cells right now.

His survival depends on donors.

“They are a life and death issue. If he did not have platelets and blood, he would not survive. He could not survive,” said Dr. LeBlanc.

Keeping the shelves stocked with blood is a continuing challenge.

“We are extremely low especially with O-negative blood type, but also O-positive blood type, A-negative blood type, pretty much across the board,” said Paul Adams of The Blood Center in New Orleans.

Many of the racks at the Blood Center are empty right now, and blood platelets only have a shelf life of a few days.

“It doesn’t matter your blood type. If you’ve never donated with us, now is the time to come in. Now is when we need you more than ever,” said Adams.

It has been a roller coaster for little Chad and his family. After beating the disease once, Chad is now isolated and vulnerable, but battling again.

“He has to have those platelets to survive. It’s literally a life or death event,” emphasized Chad’s dad.

Part of the family’s prayer was answered when a bone marrow donor match was found and the transplant completed. Now the need is for donors to step up and give blood, the gift of life.

To donate, contact the Metairie Donor Center at (504) 887-2833 or the main office of The Blood Center at (504) 524-1322. For more information,log onto


Community rallies around 4-year-old in need of bone marrow transplant – WJHL

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JOHNSON CITY, TN (WJHL)- On Saturday the community in Boones Creek rallied around a brave 4-year-old in need of a bone marrow transplant.

Kaden Haynes was diagnosed back in March with MDS, also known as Myelodysplastic syndrome.

Kaden’s father, Nathan, said he is now receiving treatment at St. Jude in Memphis.

“He has just completed a seven day round of chemo which was very succcessful,” Haynes said.


Nathan said Kaden is still on the list for a bone marrow transplant, and so his family and church helped organize an event to raise awareness for the national registry, and to get people to sign up to become a donor.

“It is hard to fathom the love and support here locally in East Tennessee, and our church, and our work, its overwhelming and it means so much to us to help our son,” Haynes said.

We also spoke to Linda Hilton with Blood Assurance who was helping out at the event.

Hilton said about 30 people signed up for the bone marrow registry on Saturday.

She said at any given time there are between 3,000 to 6,000 looking for a match, and that every three minutes someone is diagnosed with a form of blood cancer.

“There are thousands every day that are looking for a match, as Kaden was a normal healthy little boy, and then all of a sudden he has a devastating disease, that’s how it happens for many patients and there are thousands looking,” Hilton said.

Haynes said they still have a long road ahead as far as Kaden’s treatments go, telling us he could be in Memphis at least another six months.

He said they hope to continue to raise awareness as often as they can about the bone marrow donor registry.

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Inspiration + Education : . . . . for parents of children who are going through transplant

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