Cord blood transplant

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• January 9, 2005 at 5:23 pm #2990
  doreen

  Member

  Hello.. I am new to this bulletin board but reading everyones posts have helped give me some hope. I was diagnosed in March 2004 with MDS. I was never told my blast count, etc, but was told if I did not get a bmt with 1 – 2 years, then I may not be here. I continue to get monthly blood tests and just last month have found my platlets take a big dive downward which really scares me. My doctor at the clinic here has found a donor that is a 8/10 match. He recommended that I also check on cordblood which I am now doing at the University of Minnesota. Just Friday, I received a message that they have some encouraging news. I need to contact them on Monday by phone to get more details. The clinic here need to let my donor go as they can only hold him for 60 days so now I have to make a big decision. Does anyone have any experience with cord blood. I am 52 years old and thought I was in good health! My emotional state has little to be desired. I find myself wondering day to day when this time bomb will hit me. I think this has been the hardest on me. Thanks for everyone here for having this site available. It has been my only hope for the future. Bless you all…

  January 9, 2005 at 6:00 pm #2991
  Suzanne

  Member

  Doreen, what classification of MDS did they tell you that you have? Maybe you don’t have abnormal # of blasts. How about chromosome changes? the cord bllod thing must be neew because someone else on the forum mentioned it recently but before that I had not heard it talked about.

  January 9, 2005 at 6:13 pm #2992
  shirlsgirl

  Member

  Hi Doreen!

  Are you taking anything for your platelets? What are your platelet counts now? My mom’s platelets dropped to 14,000 a few weeks ago, but now on Cyclosporin and Pred. she’s holding steady at 92,000. You must be so anxious to hear the ‘encouraging news’ on Monday! Please keep us posted and good luck with a difficult decision.

  Jody

  January 9, 2005 at 6:35 pm #2993
  shirlsgirl

  Member

  Hi guys, I just found a great article, sorry it’s a tad long but quite interesting….

  Myelodysplastic Syndrome Cancer News

  Umbilical Cord Transplant May Be Effective Treatment Option for Some Patients with Myelodysplastic Syndromes
  According to a recent article published in the journal Blood, an umbilical cord transplant may be an effective treatment option for patients with myelodysplastic syndrome that are not able to find a suitable donor for an allogeneic stem cell transplant.

  Myelodysplastic syndrome (MDS) is a disease in which the cells in a person’s bone marrow are not functioning normally. The bone marrow (and circulating blood) contains early blood-forming cells called stem cells, which grow and mature into the 3 blood cell types: white blood cells, which protect the body from infection; red blood cells, which carry oxygen to the tissues; and platelets, which help the blood to clot. In the case of MDS, not enough normal blood cells are being produced and/or the blood cells die prematurely. This condition is sometimes referred to as a pre-leukemia or “smoldering” leukemia because it often develops into leukemia, a type of cancer. Some patients with MDS also have additional abnormalities, including genetic abnormalities of the blood cells, a high number of immature blood cells (called blasts) in the bone marrow, or decreasing numbers of red blood cells, white blood cells, or platelets. These individuals are at a higher risk for a more rapid progression to leukemia than are those who have more favorable cell features. There are five different stages, or extent, of MDS that include (in order of disease progression) refractory anemia, refractory anemia with ringed sideroblasts, refractory anemia with excess blasts, refractory anemia with excess blasts in transition, and chronic myelomonocytic leukemia. An allogeneic stem cell transplantation is considered the only curative therapeutic option for MDS.

  Cancers are often treated with high doses of chemotherapy and/or radiation followed by a stem cell transplant. Although high-doses of therapy are more effective at killing cancer cells, many other cells in the body are also destroyed by the treatment procedure, including stem cells. Stem cells are immature blood cells produced in the bone marrow which mature into either red blood cells, white blood cells, or platelets. A stem cell transplant is a procedure that replaces the stem cells that are destroyed by high-dose chemotherapy and/or radiation therapy with healthy stem cells. In the case of an allogeneic stem cell transplant, stem cells are collected from the blood or bone marrow of a related or unrelated donor and infused into the patient after high-dose chemotherapy or chemotherapy plus total body irradiation. In addition to the anti-cancer effect of the high-dose therapy, an allogeneic stem cell transplant induces a second anti-cancer effect called the graft-versus-leukemia effect. This effect occurs after a transplant, whereby the presence of the foreign donor stem cells (ie, the graft) attacks the remaining cancer cells. However, the donor lymphocytes may also attack the patient’s healthy tissues, causing what is called graft-versus-host disease (GVHD). GVHD can be an acute or chronic disease and occurs in the majority of patients receiving allogeneic transplants.

  In an effort to prevent or reduce GVHD, attempts are made to match 6 different proteins (HLA) found on stem cells between donors and patients. Many patients that could be cured with an allogeneic stem cell transplant do not have an appropriate stem cell donor. Over the past decade, researchers have learned that umbilical cord blood is a rich source of stem cells. Umbilical cord blood stem cells have been used to support high-dose chemotherapy treatment of infants and children. Now, there is a peaking interest in the use of umbilical cord blood as a source of stem cells for adult cancer patients who undergo allogeneic stem cell transplant. Recently, there has been a concerted government-funded effort to establish umbilical cord “banks” where umbilical cord blood is frozen and stored. These “banks” are now being integrated nationally and internationally with registries allowing patients to search for a stem cell donor. Thus, if a patient is unable to find a related donor, a search can be performed for an appropriate umbilical cord blood source of stem cells in various banks around the world.

  The major disadvantage of using umbilical cord blood is the low number of stem cells collected. The lack of adequate numbers of stem cells in umbilical cord blood units has limited the use of this source of stem cells in adult patients, especially large adults who require more stem cells. Methods through which to expand the number of collected stem cells through laboratory processes are currently under investigation.

  Researchers from Japan recently conducted a clinical trial to evaluate the effectiveness of umbilical cord transplants in 12 patients with advanced MDS. These patients were eligble for an allogeneic stem cell transplant, but an appropriate donor could not be found. Two years following therapy, 76% of patients were alive and cancer-free. Acute GVHD occurred in 75% of patients and chronic GVHD occurred in approximately 73% of patients.

  The Researchers concluded that umbilical stem cell sources should be offered to patients with MDS who are eligible for an allogeneic stem cell transplant but are not able to find a suitable donor. Patients with MDS who are considering an allogeneic stem cell transplant but cannot find a donor may wish to speak with their physician about the risks and benefits of an umbilical cord transplant or the participation in a clinical trial evaluating this or other therapeutic options. Two sources of information regarding ongoing clinical trials include the National Cancer Institute (http://www.cancer.gov) and http://www.eCancerTrials.com. eCancerTrials.com also provides personalized clinical trial searches on behalf of patients.

  Reference: Ooi J, Iseki T, Takahashi S, et al. Unrelated cord blood transplantation for adult patients with advanced myelodysplastic syndrome. Blood. Prepublished online February 23, 2003. Available at: http://www.bloodjournal.org/cgi/reprint/2002-12-3917v1.pdf. Accessed March 3, 2003.

  January 9, 2005 at 7:56 pm #2994
  Terri

  Member

  My Daughter who just gave birth send her Umbilical Cord Blood to be frozen. The doctors suggested it even though MDS and Leukemia is not supposed to be genetic they still thought it A good Idea for her to do for the baby. Seems a lot of people are starting to do this the hospital was very up on it.

  January 9, 2005 at 8:00 pm #2995
  Neil

  Member

  Hi Doreen,
  I had some comments on platelets in a message to SarahJ on Jan 8. If you go to her message under patient forum you see them.
  Cord blood is an excellent source of stem cells. Very rich!
  If you elect to pursue the program at the Univ of Minnesota, would strongly recommend you ask to have Dr Linda Burns on your team. She has been outstanding in treating a friend of mine and is part of the transplant program.
  An 8/10 match is not that great. Be sure you know the success rates on 52 yr old women with your type of MDS if you elect to go for it.

  January 29, 2005 at 11:17 pm #2996
  Vance

  Member

  Doreen, my wife Ruby recieved a cord blood transplant on 11/12/04 at University Hospital Cleveland.
  She had undergone total body irradiation as well as chemo to prepare for it.
  As of now she is doing great, as been out of the hospital since 12/17 but has to go in 3 days a week to have blood checked and recieve magnesium.
  No sign of GVHD as of yet.
  She took this option as there was not a suitable bone marrow donor available for her.
  Dx”ed MDS 4/03. Trans to AML 1/04

  January 30, 2005 at 7:02 pm #2997
  Naomi

  Member

  Hi Vance:
  I was just thinking about Ruby and wondering how she was doing and up pops your note on her. I am so glad that she is doing well and hope she continues.
  It is sooooo great to hear good news about people on the forum.
  I hope that since stem cells from umbilical cords seem to be working that it gives us all a better chance to beat this disease.
  Hope she continues to do well. Prayers are with you both
  Naomi

  January 30, 2005 at 7:15 pm #2998
  Terri

  Member

  Vance so glad to hear how well Ruby is doing.
  Continued prayers

  January 30, 2005 at 10:48 pm #2999
  doreen

  Member

  What good news that others have used cord blood for transplants and it seem successful. The university of Minnesota uses cord blood for a majority of their transplants. I was referred up there from the Mayo Clinic as they do not perform them.. Not all hospitals do. I will know if a couple of weeks if a match for me is successful… For an adult they usually have to use 2 cord bloods, because of the larger size of the patient. The 2 cord bloods have to match you along with get along with each other. It looks like mine will be coming from Germany…Its very interesting and I want to remain optimistic!

  January 30, 2005 at 11:40 pm #3000
  alexandra7

  Participant

  Hi !!
  I can’t help you with real advice about cord blood because I do not know much about this. But I would really really like to see with your head up. No!!! MDS is not a bomb that will hit you it’s just something that you have – it’s a hard think to cope with I know -but you have to get your powers toghether and fight it with every thing that you have. Don’t let it spoil your life . Please be happy for any second that God gives you and try to benefit from it in every way that you can . So I want you to take the scare out of your heart and concentrate on getting better . OK?And when you feel down just remember we are here . You will be in my prayers!!!Alexa

  January 31, 2005 at 2:32 pm #3001
  doreen

  Member

  Alexa, Thank you so much for your kind words. You added something very special to my day today.

  February 11, 2005 at 2:18 am #3002
  gemloyear

  Member

  Hi DOreen, Waiting to hear your good news from your docs. Even though my husband is to old for any type of transplant it’s great to hear that there is hope for the younger patients.Go for it!!! God Bless , Ellie

  February 11, 2005 at 7:03 am #3003
  Jimbob

  Member

  Doreen,
  You are a youngster and otherwise in good health. It would be unusual if your emotions were not going wacky now. If if looks like a transplant is your best option for beating this disease, I would stronly reccomend that you quickly get all the info you can on the cord stem cell transplant since the match is not that close with the other donor. We all want to hear how you beat this and start feeling better asap.
  Jim

  July 19, 2019 at 4:59 am #47417
  Navya Sharma

  Participant

  According to me Cordlife is the best stem cell company in India where you can privately store your baby’s stem cells. It is a Multi-National with presence in nine countries across Asia-Pacific region and is listed in 2 international stock exchanges. They are completely transparent as there doesn’t seem anything to be hidden and most importantly the agreement that I signed was notarized in the Court of Law in Kolkata. Clauses on disaster relief and transport liability recorded as their engagement whereby, by any means, if the samples are seemed unsuitable for use, they shall first attempt to organize a substitute sample from any government repositories globally within fourteen company days, losing which they shall compensate INR 2 million for their inability to fulfill their commitment. Cordlife Sciences India Pvt. Ltd is introducing the first FDA-approved AXP ® II in India. By introducing this technology Cordlife had advanced its technology in the Cord Blood Processing technology.
  visit, https://www.cordlifeindia.com/cord-blood

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