Blood Cord transplant VS Donor Marrow
 

Hi,
I planning on a BMT and can't find info on 3 yr outcomes of Bone Marrow Transplant (unknown donor) vs blood cord. I've read that the blood cord cells have to be "bundled" for adults. I'm looking for info on the rates of GVH and survival.
Thanks,
Beryl

Cord blood
 

Hi Beryl,
According to this abstract 1-year disease-free-suvaval was similar using related donor peripheral blood stem cells, related donor bone marrow stem cells, unrelated donor marrow stem cells or cord blood cells.
http://www.ncbi.nlm.nih.gov/pubmed/19135940

In many other abstract like in these very interesting videos from AA and MDS International Foundation about transplantation they mention that cord blood isn’t much used for adults because you get so few cells from the cord after a birth.
http://live.blueskybroadcast.com/bsb...T=944&CAT=1090
Kind regards
Birgitta-A

Blood cord vs marrow
 

Hi,
Thanks for the reply and the video. I'd read somewhere that some drs are bundling several cord stem cells for adults and were having less GVH events and if the patient did get GVH it was much less severe. Have you heard of this?
Thanks,
Beryl

Umbilical cord blood
 

Hi Beryl,
As far as I understand they use cord blood transplantation for patients who cannot find a suitably HLA matched adult volunteer marrow or peripheral blood donor and who are at increased risk of regimen-related toxicity and transplant related mortality, such as older or heavily treated patients.

They don't seem to have enough cord blood for patients with good donors so they save cord blood for the other patients. Here are several abstracts (a bit old) about cord blood.
http://www.cordbloodforum.org/biblio...ord/index.html

You are eventually right about that grades III-IV acute and chronic GVHD is less common in these patients but I don't think the survival at 3 years - 45% - is better than with other types of cells. It is difficult to tell the differences if they don't compare treatments in a statistical way. Much depends on how ill the patients are before the SCT.
Kind regards
Birgitta-A

survival rates
 

Hello,
I've been looking for a chart that compares survival rates with the different kinds of transplants & GVH events to just treating the MDS with Vidaza.
Have you seen any info/charts like that?
Thanks,
Beryl

Vidaza vs SCT
 

Hi Beryl,
I don't think I have seen any reports about treatment with Vidaza compared to SCT. As far as I understand you can choose SCT if you don't have too much symptoms from other diseases and you will have about 60% chance to survive with or without chronic GVHD.

If you choose treatment with Vidaza you will hopefully have some years with good quality of life - we don't know how long a patient can respond but it is common that the patients try other drugs because they don't respond at all or stop responding.

It should be interesting to know during how long time memers of this forum have been treated with Vidaza and had a good response :confused:.
Kind regards
Birgitta-A

Transplant
 

Hi Beryl, Just speaking from my experience with out the Vidaza I could have never had my transplant with 12% and advancing blasts. It took me down to undetectable blasts and gave me such good health I feel so blessed. When they found a 10/10 match i just could not wait around for the Vidaza effects to wear off. If they come up with a solid match I would go with it. They do all kinds of computer scenarios on the probabilities of your donor taking and mine was very good. Almost all unrelated donors get some GVH and they do want you to have a little. I also have 3 more bags of donor blood so if I ever have ever have problem they can boost me and my grafts are very strong. The most important thing is to go into the transplant positive and as healthy as possible!

Hi, Beryl.

You can review the records of recent transplant outcomes for individual treatment centers. See How to Understand NMDP Transplant Center Statistics on the website of the National Marrow Donor Program. The "transplant center listings" link on that page will take you to a directory of treatment centers. Keep in mind that statistics tell only a small part of the story, and may not be useful if based on only a few patients.

It's hard to get meaningful statistics on transplant survival that would apply to one patient for several reasons:

• MDS is a rare disease so there is not as much data available as there would be for more common diseases like leukemia or lymphoma
• Every patient is different in terms of the severity of their diseases, prior health issues, and the degree to which their donor is a match.
• Statistics reflect past treatments, and transplant procedures are constantly being improved.

Hope this helps.

Regards,
Ruth

thanks
 

Hi,
Thanks for the replies. I guess like everyone I'm trying to avoid the BMT and live a good long time in health and vigor. My history is similar to Vera's. The Docs found my MDS during an annual check up- I felt great then and even better now. I've finished my second round of Vidaza, eating organic, juicing, doing vitamins (esp.the K-2), meditation, visualization, using Homeopathy, exercising more vigorously than I have in years etc. It's hard to believe I'm ill and trust the Docs. It's helpful to hear your stories and I'm grateful for the advice. I trust the patients more than the Docs. On one hand it makes sense to go into feeling strong but it's scares me senseless.
It's good to hear from you Vera. How are you feeling??
Take care,
Beryl

PS
 

Hi Again,
Reading your stories, blogs and past discussions has been more helpful than anything else.
Thanks again,
Beryl

Hi Beryl
 

Yes it was scary, but it was harder not to do it, if that makes sense. I am down to one clinic visit a week and I am doing better than I ever imagined possible. My CMV is now negative and I still have some minor GVH issues but they get better everyday! My best Vera

hi Vera
 

Hi,
I hear you. I think you're right about the good match too. I read some places do an 8 pt match and some a 10 point match. Do you know the difference?
I've been doing lots of supportive health stuff that I plan to continue after the BMT. I wonder if the people who go into remission have slid back into old patterns rather than maintaining healthy ones. Have you heard of Dr. Raza at St Vincents in New York. She recommends juicing and all kinds of healthy stuff. She's not my Doc (I'm in Cville, VA but I like her approach.) Did you have your transplant in your home town? Are you isolated? My Doc is saying 1 month in hospital, 5-6 months living near the hospital and then a year staying in the house, not working outside (I'm a teacher) or being in contact with more than a few people at a time. What's your format?
Sorry for all the questions but I'm hungry for the info!
Thanks and take care,
Beryl

A Young Friend's Experiences
 

Beryl, my daughter dates a young man (age almost 21) who was diagnosed with MDS in early January. A good donor match was found for him by about April or May.

He had his BMT on June 26th. He is doing very well, but was unable to begin college classes this fall.

He lives in Houston, Tx, where he had the transplant. He has been going to the doctor three times per week, but will soon be down to once a week. He must wear a mask when he goes into public. He is taking a couple of online classes and hopes to start back fulltime at his college campus in January.

He was very weak for quite awhile after the transplant, but is beginning to feel stronger and better each day.

Another young lady (daughter of a college friend) has been unable to find a good donor match and will soon have her transplant using the cord blood. She has some genetic anomaly that has made finding a donor match quite difficult.

I hope the above helps a little bit. I know that because of repressed immunities the patients have to be extremely careful to avoid exposure to anything that can make them ill.

Best of luck to you. Please keep us posted. You live in a beautiful city. We were just through there a couple of weeks ago as we drove a vehicle home from Philadelphia.

thanks
 

Hi,
I'm glad your son is doing well. I'm glad the on-line courses are working for him too. I'll be teaching on-line (hopefully) after my BMT until I can go back on campus.
Thanks for the info- I hope the cord transplant exceeds all expectations!
Take care,
Beryl

Questions
 

Hi Beryl, A 10/10 match is always the best have you tried researching on the internet?There is a lot of info on typing , I am no expert and it would be hard to explain all the nuances. We live 500 miles r/t to San Francisco, not that close! There are alot of assistance programs available through the Lymphoma/leukemia foundation and they are very EZ to get, our insurance allows us some housing and food but no mileage. It costs $22 a day to park at UCSF but they give you a handicap Placard and it is free. However we got $450 from the L/L foundation already for mileage. We happen to have a house to house sit fall in our hands, but there is usually low cost housing near by. Check to see what your insurance will provide. In a lot of cases you only have to stay near by for a month. It all depends on your progress. The work thing is a hard one, you can collect state disability and sometimes Federal. Fortunately for us we have a home office and we get paid even if I don't work and my husband draws a disability from the Police Department that pays our house mortgage. Hope this helps.