I know someone can help!

[mdsmom]

Hi friends,
Just got back from MD Anderson, my daughter has AML. Her blast in the marrow biopsy was 34%. What are the alternatives to a transplant. We’re mighty scared!

[Suzanne]

I guess I don’t understand why you are so reluctant to go the bone marrow transplant route if she still has 2 perfect matches. As far as I know, it gives her the best chance for a recovery at this point and the statistics for success are so much better for someone her age unless there is some other factor that makes it unwise for her. I think once someone has relapsed there just aren’t that many options.They told me that there are some but not many.( I am not investigating until the need arises because who knows what options will be out there when and if the time comes) I have known of people that went through chemo again and went back into remission. There are trials out there for Zarnestra for people in remission again after a relapse but I do not know what rate of success they are having.What is her doctors at Md Anderson recommending? That is a highly recommended center for MDS. If that transplant is still an option, look at it carefully.

[Jimbob]

Cecillia,
Like Suzanne, I don’t understand why you are so reluctant to have Keelyn have a BMT/SCT. At her age and being at one of the best hospitals for the procedure, she should have a much better chance for success than most. Know that there are many praying for her and for your family.
Jim

[Suzanne]

I guess I do know why it would scare you. I read all the stuff they give you about what might happen when we were still considering it & they were running tests to see if my sister was a match. It was enough to scare the —- out of anybody. But now that I have read that kind of stuff with every drug I have taken I don’t let it do that to my mind anymore. I just figure that it takes pretty strong stuff to kill those cancer cells and prevent them from regrowing and that we are taking some pretty big risks no matter what we try or even if we just go for supportive care. Anybody might have a truck hit them next time they leave home-all of us are just a lot more aware of our risks!

[mdsmom]

You are right- there aren’t many options. Silly me, I let my guard down. When the words came out of the doctors mouth, I know my heart stopped. I’m adjusting, gearing back up to do battle. Of course, the donors have not been contacted, we’ve got lots of questions. Last year I met many great folks at the hospital and found 1 patient that lived after the transplant. He had signifigant GVHD issues but survived. The reality is a nightmare, and changes the situation completely. Her age is definitely to her advantage, and a 50/50 chance could be worse I guess. I just wish it was me instead. We’ll see what happens. BUT IT STLL SUCKS

[KristyS]

Hello MDSMOM,

I too am a mom going through this. My daughter is 14 and has RAEB. She has to have a transplant in August. I am terrified, but what can I do…….we don’t have a perfect match so we are using cord blood which I prefer anyway due to lower chance of GVHD. We live in San Antonio, so just down the road from you. My dauthers website is http://www3.caringbridge.org/tx/mia/
feel free to follow our journey. I just had to write and say I agree THIS SUCKS !!!!!

[mdsmom]

Hi Kristy,
When we started this journey last year there were no young women to be found in cyberspace. I’m grateful we found each other. We’re getting our plan in place to deal with Keelyn’s little 2 yr old son since Mommy is going away for awhile. My heart is bleeding…….

[Suzanne]

I am wishing for success and long happy lives for both these girls. This disease seems especially unfair when it hits people so young! I sure am glad they have such caring Momsfor support! I know this must be almost impossibly hard for both of you and I know how you feel in that I am glad it is me and not one of my children or grandchildren. There are a lot of caretakers on this forum and I know you will both find a lot of support here.

[lindajo]

I was 29 when I was diagnosed in 1991. To date I have only had transfusions and antibiotics as needed. My sister is a perfect bone marrow match.

Initially doctors thought I would need a BMT but after 14 plus years they no longer think so. I have been up and down so many times that I recommend you learn to expect that and not freak out at every blood count.

Is it possible that she is just sick and MDS is not the issue? Did they do a bone marrow tap?

Her working in a hospital is not going to help her stay healthy. That is where all the bad germs are. At least she is constantly reminded there of proper hygiene.

Can she quailfy for disability or retrain for a less stressful job, less risky position? She has time on her side. She doesn’t need to go for the BMT immediately. A lot of promising research may make BMT unneccessary. Good Luck we will pray for you and your family.

[lindajo]

Sorry, I am new to the website and didn’t realize that doctors were already recommending BMT. I just think that it should be a last resort after two or three opinions.

MD Anderson is an excellent center but research is movng so fast that you might want to consult with another center of excellence team before going for the transplant.

A second opinion is always a good idea. I will pray that she goes back into remission as soon as possible.

[mdsmom]

Her bone marrow biopsy last week showed 34% blast. Has your disease progressed into leukemia? I wish waiting would make it at the very least, tolerable.

[KristyS]

mdsmom

My heart aches for you because you have your precious grandchild to worry about as well. That is just heartbreaking but we have to remember children are much more resilient than we are. I have a 2 year old who is not going to understand why his sister just disappears and then is going to be so weak and sick. This is just a cruel situation. He loves his “sissy” so much. The two of them are inseperable and it is so sad that he has to be exposed to such horror at a young age.

[John in GR]

Perhaps having a BMT/SCT is the absolute best decision your daughter can make. Her chance for success is certainly better because of her age. Furthermore, her condition has unfortunately crossed over to AML.

On the other hand, I certainly wouldn’t ignore the warnings re side effects. Ask direct questions such as the 1,2,3,4 or 5 years survival rate post procedure. The warnings are there because that is what has happened to other people.

My prayer is that God will grant you and Keelyn wisdom beyond yourselves re this most difficult choice.

John

[mdsmom]

Kristy, I went on the website, what a beautiful child! Tell me more about cord transplants. I have traveled through many forums, and I believe Mia is the youngest victim of MDS I’ve come across. It is still MDS, right? Keelyn was told during her chemo that she would never be able to have more children, she took 3 birth control pills each day. While she was healthy, her cycle came back like clockwork. I asked her today if she wanted to look into having eggs harvested. She’s such a smart aleck-took one look at Aubry with his underwear on his head, two unmatched shoes singing Barney songs at the top of his lungs- and asked me if I’d lost my mind! Mia looks so happy and healthy, I’m sure she will be just fine. We’ll help each other through this. Just curious, is there any autoimmune blood or bone marrow failure syndromes in your family? 3 of the last 4 generations of women on my side had blood disorders. I found out recently I was transfused at birth. Since it is so unusual for young people to get MDS, and all the statistics say even more common in men (although I don’t know that I believe this) I was just wondering. I’ve always thought something else was going on in Keelyn’s case/. Hang in there, all the caring folks we’ve met on this site will help us through.

[Marsha]

mdsmom

I too don’t believe MDS is more prevalant in males, I had MDS/CMML and had a BMT last ll/04, tho I have some issues with GVHD of the mouth ( which is getting better)and problems maintaining magnesium and having problems gaining any weight. I am feeling better every day, exercising more, eating better and enjoying my life. I pray that Keelyn makes it to the other side after BMT. It is tough but then again life in general is tough at times.
God Bless, Marsha

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