Just diagnosed!

[jcbydesign]

My hematologist told me today that I have MDS 5q syndrome with 5% blasts. Hemoglobin 8.6 which is down from two weeks ago. The plan is to redo CBC in two weeks but she thinks I will need a blood transfusion in a month. After second or third transfusion will put me on Revlimid 10mg.
I have been very calm the since the Bone Marrow test but today, on the way home, it just hit me hard. The sudden realization that I will be at the mercy of this progressive cancer generated so many different feelings I just broke down and cried.

[Tii]

Well you are in the right place to vent, write and read about stuff that we go through.

I was diagnosed with MDS 08/12 and went through a bone marrow transplant in 12/12. Everything happened just so fast! But I have cried the desperate tears, I have cried the sad tears and I have cried the happy tears. We know how you feel and its okay to cry, its good to cry. But right now you can't let fear take over.

Everything is so new that it can totally be overwhelming, but you need to stay positive, have a network of people to talk to, write down questions for your appointments and do not google the internet for answers. Not sure where you are located but there are communities with support groups, there are blood conferences coming up to meet with others, there are phone lines to talk with someone, you are not alone.

But meanwhile, try to maintain a normal functioning life (I was working until the day before I got admitted to the hospital for my BMT), eat healthy, exercise and keep a journal of bruises, red dots, bleeding gums etc.

Hang in there!

Tii - 37 yrs, MDS/t-cell leukemia, BMT 12/12 (sister donor)

[bailie]

Jane, I am sorry for your diagnosis. This is an excellent place for information and understanding. You will learn more than you ever imagined in the next few months. I am a 1 1/2 months into this and understand the feelings. I noticed the Portland, Oregon location. Perhaps we will meet at OHSU. I have just finished my first round of Vidaza, which seems to be the therapy of choice for my situation.

[sbk007]

Originally Posted by jcbydesign

My hematologist told me today that I have MDS 5q syndrome with 5% blasts. Hemoglobin 8.6 which is down from two weeks ago. The plan is to redo CBC in two weeks but she thinks I will need a blood transfusion in a month. After second or third transfusion will put me on Revlimid 10mg.
I have been very calm the since the Bone Marrow test but today, on the way home, it just hit me hard. The sudden realization that I will be at the mercy of this progressive cancer generated so many different feelings I just broke down and cried.

It is shocking. Did your doctor tell you that 75% of Del 5q patients respond to revlimid and live for decades?

[Cheryl C]

There is so much to learn when you are first diagnosed with MDS it's almost overwhelming. However researching for yourself is essential and knowledge is power. This website is an excellent start.

There is some good information elsewhere on the web too. I found the Aplastic Anaemia and MDS International Foundation web site really helpful. They have an online learning section where you can listen to presentations from experts. http://www.aamds.org/about/MDS/types

Remember "cancer" is a word, not a sentence!

[jcbydesign]

@SBK, my doctor told me I probably had 5 years, if all goes well. But there is that fear that I will be of those who doesn't respond to the Revlamid. But I am praying...I have two grandkids who love to play with me.

@baiile I am waiting for a referral appointment to OHSU so might see you there! Do you go to any support groups, and if, where?

@Cheryl - thanks for the web sites. I will be visiting them shortly.

@Tii It does sound like you had a real fast dunk in the MDS pool. How are you doing post transplant?

[bailie]

Jane,
I live about 40 miles from Portland so I am not attending any support groups in your area. My connection at OHSU is Dr. Rachel Cook who is very informative. I am also taking two days of my seven day treatment each month at OHSU. I will most likely have my transplant at OHSU.

[DebS]

Jane,

I echo what everyone else has said. It is so hard to receive this diagnosis. But do know that you have support and information here. This is the best place to come for just about any reason. People are so supportive and everyone and I mean everyone is in your corner!!!!

God bless!

Deb

[MaryS]

Dear Jane,

My dad was dx this Oct 1 with MDS/Myleofibrosis. He is 77 yrs old.
Everyone here is so nice and encouraging. It is a frightful time because you hear things or reads articles and it scares you. I have read many positive stories on this site and others as well. Learn as much as you can, and ask questions. Don"t be afraid, you are your best advocate.I think it takes some time to process this information. It is a lot to grasp. Hugs to you tonight.You came to the right place. If you ever want to talk or need help just email me.
There is a lady on this site who has battled this dx for over 10 years. She is my ray of hope. It was her story that changed the way I see things.
There is a section where pt tell their stories. Her story is the first story.
My prayers are with you tonight.

Mary Schmitz

[summerdrake]

Jane,
The most important thing to remember is that YOU CAN DO THIS! I felt like you did when I was diagnosed with SAA in May 2013. I kind of went through the motions in the beginning but then when treatnents were discussed I got scared. Being healthy and then finding out this? No fun. I dont know you personally but I just know you are stronger than you think and you will get through this! Best of luck with everything. Keep us posted!

[johnwc]

sbk and bailie

I'm John, diagnosed with CMML, in Portland and met with Dr Meyers at OHSU about transplant last week.

is it an epidemic??? ha ha

[bailie]

Welcome John. I am surprised you are lined up with a transplant team already. Doesn't it seem strange (not a strong enough word) to get a diagnosis like this. I couldn't believe it and still have trouble after two months. I feel fine also. I am heading toward transplant at OHSU probably around March or April (that's a guess). I will be having a bone marrow biopsy (3rd) in about three weeks. That will determine if I stay on Vidaza (in my second cycle now) longer or have the transplant while I still feel healthy.