My doctor told me that I am first stage myelodysplasia. I would like to know if it will turn into cancer down the road? I am wondering....do I or don't I have cancer. It's so confusing. Can anyone shed some light on this?
Thanks and God Bless
Jean

Hi Jean,

First, write down every question that comes to your mind and make sure your doctor/oncologist answers each one in a way you can understand. Don't be afraid to seek a second opinion if you feel you need one. Do all the research you can, but be sure to stay with the facts because as with anything you'll find a lot of different opinions out there.

I would suggest you go to the National Cancer Center site on the subject at http://www.cancer.gov/cancertopics/pdq/treatment/myelodysplastic/Patient . I also recommend the Nationa Leukimia Society folks at http://www.leukemia-lymphoma.org/hm_lls . These folks have been great in sending me info, asking and answering questions, some financial aid and other things. Most larger areas have a local chapter as well.

Make sure you and your doc are working in an informed manner together. Your doc along with test results and other avenues will determine what your MDS diagnosis is. You may have options that many of us here don't have but some here will have gone through them so keep asking.

Be informed but be positive and be sure that you set the rules of how you live your life and how any diagnosis has an impact on you.

God is right there with you each step and so are we.

Mike

nanajean my dad's dr says it is cancer. as I understand it some drs do not agree with that. it use to be called pre-leukemia. there are tons of sites and some will send you free information on it. I have a link I can send you via pm

50/50 on the cancer/not cancer for MDS but our hemotologist works in the "cancer center" AND there is special free parking/valet parking which I wish I had known about on our first visit.

My Drs have referred to it as blood cancer, & I too go to a cancer care center.

But don't let that scare you--cancer or rose, it's the same disease! It doesn't spread to any other organs as far as I know.

The meaning of first stage, I'm not sure of. My Dr told me about five major groups, and said that I was in a low-risk group. At first after diagnosis, I avidly researched all I could & tried to absorb the meaning of the various components of the blood.

Finally, I'd had enough. It takes a lot of time & thought, and I'm too busy living!

Doctors visit went well. Her confirmed that I have "low risk myelodysplasia". My hemoglobin went down to 10.5 from 11.3 but doctor said that's okay. I will get another Arnesp shot in 2 wks and again 2 wks from then. If my hemoglobin continues to decline, he will then increase the dosage and continue monitoring. So, it's wait and see, but in the meantime I am really not worried. I feel I am in good hands and still feeling good. I hope the shots work; otherwise it means another transfusion. I am thankful to God that I am feeling better. God bless all of you.
Jean

Jon,
I know I am going to be your biggest cheerleader during your transplant process or at least one of the loudest. I am meeting with the stem cell transplant doctor again Feb 3. My doctor told me last month I am still not ready for one but will be ready if/when the time comes. I hope someone can keep us informed of your progress while you are going through this. Did you have a perfect match? My two sisters were not a match for me but I have two perfect unrelated donors. It's really worries me to have one but I know that the possibility is there. I will pray for you and everyone else here to give us all strength to fight this disease.

guys I won't be on for the next few days probably. my brother was tragically killed today. Dad is not doing well and didn't take the news well either. I do believe Dad is losing his battle. his wife told me tonight that she thinks his one kidney is shutting down as he has not much output today. Please keep us all in your prayers. much love to you all.

Oh Posh, you won't read this for some time, but how terrible for you! Our hearts go out to you, and we send you our prayers for strength.

My 36-year-old son was killed a few years ago & his father died 4 months later, so my daughter & I feel a special kinship about what you are facing. It was a very black time for both of us.

But you will get thru it, Posh. Come back to your leaky boat crew when you can.

Posh
I'm so sorry your having to go through all this but know for sure we're there in spirit with you and will continue to have you and all of your family in our prayers. When you can let us know how your doing.

Your friiend,
Mike

birdmom I think I am still in shock. I thank you so much for all your support during these black hours.


mike thank you hon. it is good to know I have all you guys as my family and to know you are all with me in spirit.

So sorry for your loss. My prayers are with you.
Jean

Jean, I'm so sorry to hear what happened. It is so upsetting when one of us is lost. I still tear up when I think of Chris and read his early messages of welcome when I was first diagnosed.

I had my transplant last night. The stem cells are from an unrelated donor. All I know is that he is a 34 year old male. So far, I feel a bit fatigued, but I'm getting a lot of medication. As of tomorrow, I won't be allowed out of my room until the white cells come back. They are at .6 yesterday and on the way to zero..

I'll keep everyone posted. My personal email is jjunge@xtra.co.nz
Best wishes
Jon

Poshshorty, you are in my prayers as you go through this difficult time. You are in our hearts so know we are thinking of you.

Jon, please keep us updated. You are getting a stem cell transplant? Did they bring all you counts down yet? Tell us the process you are having done to help us understand the procedure. How you feel, where you hurt and whether you think this is worth it all. Are you scared? I want to go through this with you so i will know what to expect when it's my time to have it done. Keep us a running diary if at all possible. I know that there are more than just you and I that will probably be getting this procedure. Thank you Jon...I am praying for you too.-

Jon, the deed is done? I'm sure you are trepidatious, & being cooped up for so long won't be easy.

Susan has a good idea about the daily diary. You can help others by detailing what you've gone thru so far and what happens next. Could you do that?

Saw my oncologist yesterday. My Hgb leaped back up from 10.3 to 11, so I'm a happy camper. He put me on a 3-month visit with him rather than 2, so he feels that I'm doing well on Aranesp as it stands. (I have the max dose every 2 weeks.)

Posh, I'm glad that you checked in with us. If you are in shock, that's a good thing. It allows the body & mind a little time to absorb bad news. How is Dad doing?