When there are no adult donors available
Many of you are aware that my husband PC opted for a mini-allo stem cell transplant using umbilical cord blood as the source of stem cells. You can read details of his transplant journey by clicking on the link for Harvey’s Journal. (“Harvey” was the thinly disguised pseudonym for PC, to protect his privacy while he was alive.)
While PC did not survive his cord blood transplant, I am still deeply convinced that cord blood and transplants using them are a tremendous resource for patients who need transplants for treating aggressive CLL. Far too many patients who need transplants cannot get them because they do not have matched sibling donors or matched unrelated adult donors (“MUD”). This is particularly true for patients whose ethnicity is other than Western European, or those of mixed ethnicity. Heck, even the new US president is a self-proclaimed ‘mutt’.
Cord blood transplants for adults are coming of age. Many of the transplant centers now offer this option for patients who cannot find adult donors. University of Minnesota continues to be a leader in the field, their double cord program (where stem cells from two umbilical cords are used per adult patient) has become the industry standard.
As you might guess, I have read just about everything written about the subject. If you want to get hold of the latest literature on the subject send me a personal email and I will try to help you. Another excellent source of information is the Cord Blood Forum. Below is the summary of essential facts published by this non-profit site. Interested patients and scientists can also sign up for the forum’s free newsletters. If a cord blood transplant may be in your future I strongly urge you to visit and explore this very useful and credible site.
Summary of Essential Facts
Approximately 10,000 umbilical cord blood transplants have been performed since the first transplant was performed twenty years ago.
Cord blood has become a proven source of stem cells for transplantation, and the procedure is no longer considered “experimental.”These transplants have been done for all of the same diseases, approximately 70 in all, for which bone marrow transplants are performed.
These are particularly leukemias, lymphomas, other malignant blood disorders and congenital blood disorders.Patients who lack a matched related donor in their family or matched unrelated donor in any of the donor registries, such as the National Marrow Donor Program, can be transplanted with cord blood stem cells.
There must be a very close match between the patient and the donor when using stem cells from bone marrow or peripheral blood. For a transplant using cord blood stem cells, however, the matching need is not as precise so that an adequately matched cord blood unit can be found even though a matched adult unit is not available.Since cord blood transplants can be performed even when no bone marrow donor can be found, a large majority of the recipients could not have been treated and possibly cured if it were not for the existence of cord bloods.
No patient who needs a stem cell transplant should be informed that it is not feasible because of a lack of a donor unless cord blood registries have been searched.Although some transplant centers do not have experience with cord blood, there are many transplant centers in the United States and throughout the world where numerous such transplants have been performed.
A list of transplant centers with experience performing cord blood transplants can be found on-line at www.cordbloodforum.org.Cord blood has become the most frequent source of stem cells for transplantation in children in the United States, and is gaining increased usage in adults.
This is a contrast to the early days of cord blood transplantation when it was only performed as an alternative to bone marrow transplants when an adult matched related or unrelated donor could not be found.Development of the technique of double cord blood transplantation expands use of cord blood transplant into adults.
It was previously thought that cord blood transplants were of value only for children because of the limited number of stem cells in an umbilical cord blood sample.Cord blood can be obtained very quickly if a transplant is needed urgently, which is frequently true in patients with malignant blood disorders.
Obtaining stem cells from other sources, including bone marrow, usually takes many weeks.Computerized searches quickly identify cord blood units in banks throughout the world, which can then be quickly transported for transplant.
Also, because cord blood is rapidly available, transplantation can be scheduled almost entirely according to patient needs rather than donor availability.Some medical centers use cord blood stem cells almost to the exclusion of bone marrow or peripheral blood transplants because of their proven effectiveness and because they can be obtained rapidly.
Graft-versus-host disease, an adverse effect of stem cell transplantation which causes significant mortality, is less common after cord blood transplantation than after transplants using adult stem cells.
This is particularly true when compared with transplants performed using stem cells that are obtained from the peripheral blood of donors.
6 comments on "A precious source of stem cells"
Great website Chaya!
Thanks loads! I signed up for their newsletter just so I have something else to bug my doctor about.
Since my only sibling, my sister, was only a 4 match, I guess that, when the time comes, my only options will be NK or cord blood transplants. I did discuss the NK transplants with my doctor when I saw her Tuesday.
Not that I need a transplant yet, hopefully not for a long time, but just to be sure that she is thinking about it! They are not doing NK transplants yet at Strong, however. Maybe mentioning it will get them looking into it.
I noticed on the Cord Blood Forum website that both my hospital, Strong Memorial (The Wilmot Cancer Center), and a nearby one in Buffalo, Roswell Park, have both done them. Roswell Park has done the most in New york State other than one in New York City. That’s good to know as well. It’s only an hour or so drive from me here.
BTW, besides being my doctor, Jane is listed on marrow.org as being one of the 6 attending physicians in the bone marrow transplant program at Strong, and has done double cord transplants. So, I probably have a leg up already … hopefully!
Thanks for continuing to find these little gems of knowledge for us…I probably never would have on my own.
Harley
Chaya,
I am humbled by your strong spirit.
I don’t know if I will ever have a transplant but it is good to have some background knowledge of the types.
I have read Harvey’s journal and your comments about grief. PC and your courage inspires.
This website has been so useful for me as I try to learn cancer talk, research findings, diagnosis tools, treatment options, etc.
Thank you for sharing. You are one very smart scientist!
Judy
Dear Chaya,
As I looked over the forum, One thought struck me like a bolt of lighting. See if i am totally thinking in the wrong direction.
The cord blood is blood that is inmature and has to be tought everything and kind trained to protect your body. My question is, if medicos have not found out what causes our cll to happen, Can they look at this imature cord blood and tell in the future that itself will not mutate into cll? It would be hell if you were cured from the original cll, and then the cord blood itself became leukemic!!
With Best Regards!!
Raymond Parker
The chances of transplant patients receiving a cord blood graft that is itself leukemic are extremely small, next to zero. For starters, children are not born with CLL. The chromosomal defects that lead to CLL happen much later in life and no baby is born with this disease. Second, cord blood is collected only after extensive medical information is gathered regarding the health history of the mother.
Chances of getting “leukemic” graft is significantly higher in the case of a sibling donor, given the known familial nature of CLL. Your brother or sister has a much higher chance of harboring hitherto undiagnosed CLL than a random stranger, and cord blood unit collected from a healthy mother has the lowest (zero) risk of being CLL infected.
Cord blood cells are immature in the sense they have not been exposed to pathogens (hence the need for full set of immunizations and vaccinations for the patient after successful transplant, just as if the patient were a new born child) but they are fully functional when it comes to hunting and killing cancer cells. Graft-versus-leukemia (GVL) effect has been demonstrated to be every bit as effective with cord blood transplant as with adult donor transplants.
The big advantage of cord blood is that the matching between the donor and the patient does not have to be perfect, which means many more patients can be matched with suitable grafts. There is also reason to believe GVHD complications may be less pronounced.
A further advantage is that cord blood units are uncontaminated with CMV and EBV (cytomegalovirus and Epstein Barr virus). Please visit Harvey’s journal for a full length discussion of these two dangerous viruses and how they impact blood transfusions etc.
Annette
Chaya,
Why not use stem cell transplant immediately after CLL diagnosis ? If it is already commonly used it could spare all the chimo suffering.
Thank you for your patience.
Annette Driesen
Transplants (even the mini-allo variety) require significant amount of chemotherapy and radiation as preconditioning before the new stem cells can be introduced into the patient. There is also a significant of treatment related mortality. As many as 30% of patients undergoing transplants will die of complications resulting from the transplant. There are also post transplant issues such as GVHD that can last a long time.
Especially with an indolent cancer such as CLL, it is not prudent to go into an transplant too early – not while the patient has several good years left without getting a transplant.
As always, tough choices between risks and rewards.
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