Tina with John's journey as new members
 

Hello everyone. My name is Tina, and I am a newlywed 10/3/2014. On October 27th my husband, John, was hospitalized and given 6 blood transfusions. We finally got a diagnose November 13--MDS RAEB. The Oncologist just told us the name and that it's not leukemia. While John was receiving his sixth transfusion, I googled his diagnosis. I was shocked! Cancer? The dr forgot to tell us it was more than a cold we were fighting. I am here to gain education, support, and new friends that have experience with this stuff. We are scheduled to go to a consult in MN on Wednesday. Very scared, and confused is all I feel right now.

Tina

Tina, we are sorry to hear about the diagnosis. There is a tremendous amount of information and support in this forum. The archives here will most likely answer many of your questions. Without a doubt knowledge is power when confronting MDS. As you have started to realize MDS is no bargain. You will soon realize that everyone is different in their experience. There are many similarities however and it is helpful to draw on the experiences of others. Ask questions here and you will get answers.

The best information (I believe) about MDS is the two part two hour presentation by Gail Roboz, MD at
https://live.blueskybroadcast.com/bs...=1418&CAT=8549

Hi, Tina!

I'm so sorry about your husband's diagnosis especially at a time when you should just be enjoying newlywed life! MDS is a very scary diagnosis and a very frustrating one as most of us had never even heard of it prior to being diagnosed with it! As Baiie said, there is a lot of great information throughout this forum (take advantage of the search features to find helpful information), but more than anything, this board is full of very caring people who may not have all the answers but have tons of empathy, compassion, celebratory cheers for your successes and virtual shoulders for crying on when needed! It is very hard to wait for all of your husband's test results, but it does give you a clearer picture of what his treatment options will be and what others have experienced with the same or similar disease specifics!
I'll be keeping an eye for updates from you and wishing you and John all the best!

You are talking to a group of people with complete empathy for your situation Tina. An MDS diagnosis was uncharted territory for most of us. One of the first things to do is to write down all your questions and get answers from your haem/onc specialist first.

As Baillie said there's loads of help on this forum once you have specific aspects of your husband's MDS to discuss with us.

One positive for starters is that your husband has youth in his favour!

Update 1 John's MDS RAEB-1
 

Our appointment in MN at the transplant facility was very somber. His prognosis: 1 year. His brother and sister were tested as possible donors. They will contact us Tuesday to let us know what the game plan is. His blood shows 5% blasts and he is transfusing as I write this. He can't go more than 5 days without needing blood. His levels decrease to 7.2 before they even think of transfusing him. Today his number was 7.4, but with the weekend upon us they chose to give him two bags. We are all scared and trying to figure out our expenses and job situations. My work only offers 12 weeks of fmla---so I will have to choose between being with my husband and working to keep my job and our insurance. Thanks to everyone who has commented. We both feel very welcome here.

Thinking of you!
 

Hi, Tina!

I'm so sorry that your visit with the transplant team didn't bring better news! Please, don't give up hope - there are many members here who have had similar stories and have seen a lot of success in their treatments! I hope John's siblings will be good matches for him or that an unmatched donor can be found quickly! Hang in there and know that all of us here are hoping and praying for all the best for both of you!

Tina - I just want to second what JordanN has said. Many of us have had horrible prognoses and there has turned out to be light at the end of the tunnel. Thoughts and prayers for both you and your husband. Keep posting as you get more information.