Just wanted to thank everyone here....

[Gabby]

...I just found out a few days ago that one of my best friends was diagnosed with MDS. He is 33 years old and the father of two beautiful girls.

I found this forum in my search to better understand Myelodysplastic Syndrome. I don't know the level or severity of his case, but I do know that he has already had three "BMBs" (one without sedation) and has 22 potential matches for transplant.

From what I understand, the transplant has many risks and is a very tough thing for the patient to endure. He is going to have to go to Dallas for 2 months for the chemo and isolation, I guess. Could some of you with knowledge explain to me the process, and your experience?

I do want to express my appreciation to the members of this board and the administrators - the wealth of knowledge and personal stories have been very helpful blessings for someone new to MDS. I wish all of you blessings from God, and I will see you on the board!

Gabe

[Neil Cuadra]

Hi Gabe. I hope you can find some information here that will help you and your friend. You can also get a free packet about MDS from the Aplastic Anemia & MDS International Foundation.

The BMBs (bone marrow biopsies) were diagnostic tests used to identify the disease and judge the subtype or severity. One measure of severity is the percentage of immature blood-forming cells, called blasts. Another is based on the number and types of abnormal chromosomes. These measures can change over time so it's not uncommon for patients to have multiple BMBs.

A bone marrow transplant or stem cell transplant can cure MDS, but can be a rough experience for some. Your friend's relatively young age works in his favor. If he's been generally healthy other than the MDS, that's a good factor too. You also want the best match between the donor and recipient based on blood antigens, and with 22 potential matches he's likely to have a very good match.

My wife documented her 1998 transplant for MDS on her Profile Page but now, ten years later, transplant procedures have improved greatly, and many patients have shorter transplants and less severe side effects. That's not to say that it's easy, but that there's much reason to be optimistic about curing MDS this way.

Feel free to look around these forums for personal stories, and ask any questions you have. We're patients and caregivers, but we've educated ourselves quite a bit about MDS, to help ourselves and each other.

[Gabby]

Thanks for the information, Neil.

My friend had 22 matches for transplant. Four of the first five contacted agreed to donate, so that is good news! His recent bloodwork was good. Since July, he has undergone 15 transfusions (I think for platelets) - so hopefully a successful transplant is in the near future.

[Gabby]

Just wanted to update everyone on my friend Jim. He and his family can use the prayers right now.

Jim left for Baylor Medical Center in Dallas last Friday (121208) to begin chemotherapy, radiation, and a peripheral stem cell transplant. Unfortunately, upon arrival his doctor informed him that his MDS progressed into AML.

Fortunately they decided to proceed with the same treatment, with the same expected results. He began chemotherapy on Sunday/Monday, and had radiation on Tuesday, Wednesday, and Thursday. Today (Friday 121908), Jimmer had a successful stem cell transplant. He will undergo some more chemotherapy to prevent "Graft versus Host disease." I talked to him several times and he seems upbeat. He has a wonderful, supportive wife and family.

The reason I am posting this here is because I know some of you have been through this. His wife started a page for him on a wonderful website called "CaringBridge," and I am sure some encouragement from some of you would probably help him a lot. The link to his page is: http://www.caringbridge.org/visit/jimwatts

Please, if you can, any prayers or encouragement would probably lighten his day. You all know how priceless encouragement, support, and prayers are.

God bless you all, and thank you.

Gabe

[Neil Cuadra]

Gabe,

I'm glad to hear that Jim's transplant went well. Preventing or limiting Graft versus Host Disease (GvHD) will involve finding the proper dosages for meds. GvHD is the result of the new immune system from the donated marrow reacting to the patient's tissues. A little GvHD is actually a good sign; after all, to the new immune system the patient is "foreign" and it's doing its job by putting up a fuss. It's never been clear to me how the new immune system learns to accept or tolerate its new home while it takes up the job of stopping truly foreign cells, but the doctors work their magic to make exactly that happen.

Something else you said struck me as good news. The fact that four of the first five potential donors said that they would donate shows how willing people are to help someone in need, even if it's a stranger.

[Gabby]

Neil - I am putting some thought into getting involved in educating people on how simple being a marrow donor really is. I haven't gone through the process, but from what I understand is that a swipe of the nose is all it takes. If you decide to donate, you are put on medication to stimulate stem cell production, then it's pretty much like donating plasma. Am I right?

[Neil Cuadra]

Gabe,

You are correct. There are really three aspects that you could share with other people. The first (joining the registry) is the one that needs the most publicity, but it's good to know more about the donation process itself for those who have questions.

Joining the NMDP registry

Joining the National Marrow Donor Program Registry usually involves a cheek swab and some paperwork, including a short health questionnaire.

Another choice is to give a small blood sample, but I don't know why anyone would prefer that to a cheek swab, unless they arrange to have the sample taken while they are donating blood anyway.

Somebody (the registrant or a sponsoring organization) has to pay for the tissue typing, on average about $50.

The website of the National Marrow Donor Program provides more information.

Stem cell donation

Registrants don't get called to donate stem cells or marrow unless they happen to match someone in need. A lot of people, including me so far, are on the Registry but have never been asked to donate.

If you do show up as a match when a Registry search is done for a patient, the National Marrow Donor Program contacts you and provides full information about the procedure, checks if you are still available and willing to donate. You get tested at your local hospital or clinic to see if you are indeed a match for the patient. They also talk to you about the schedule.

You can say yes or no, but if you say yes it's extremely important to follow through, since a patient's life likely depends on their receiving your donated stem cells or marrow on the appointed day.

For a few days before a stem cell donation, you'll be given Neupogen injections. That puts stem cells into your circulating blood so it's easy to extract them. On donation day, you donate the stem cells the same way you'd donate platelets or plasma. It's an outpatient procedure.

Donors never pay for the donation procedure. The patient's insurance covers it.

Bone marrow donation

Most of the description above applies both for donating stem cells and for donating bone marrow.

The difference is that when you donate bone marrow it is taken from the pelvic bone, under anesthesia in a hospital, rather than directly from the bloodstream. Neupogen is not used.

After a bone marrow donation, you may be sore for a couple of days. Some donors have said they felt fine immediately, while one donor told me it felt like a bad bruise for few days.

It's easy to get more information about any of this by going to the NMDP website or by contacting them.

[Kristi S]

Neil and Gabby -
I myself have just registered to be a bone marrow donor. I have a kit being shipped to me where I swab the inside of my cheeks with 4 different swabs and send them back. The kit cost $52 dollars, but I too wanted to make a difference in someone's life. Please keep us updated with Jim's progress. My husband and I are here in Texas also so if you ever need anything, just post a note on the forum, we check it several times a day. Thanks to all of you for your support of Paul and thanks for your prayers. We had a BMB last wednesday and are expecting preliminary results tomorrow. Thanks.

[Neil Cuadra]

Hooray for Kristi!

With everything you and Paul are dealing with, signing up for the Registry is a truly generous act.