Hi everybody. Just watched the video for "Blessings" and I'm glad one of you mentioned it. I do feel blessed despite MDS.

Another Arnesp shot today. My hgb is 9.0 (up just a tad from 8.8) two weeks ago. I mentioned to the nurse that I usually feel extra tired, and achy, for a couple of days after my shots. She said that happens to some people and that it's my body trying to make new bone marrow, and that the shots are doing their job. :)
God Bless you all.
Jean

Hi everyone. I was diagnosed with Myelodisplasia in May 2011. Both my red cells and platlets are low. So far my Blast count is low and chromosones are normal. The doctor started me on Vidaza which is form of Chemotherapy. I have been through 2 cycles and feel a little bit better. has anyone out there been on Vidaza? If so, what were your experiences?

Lou

Hi All

Thought you may like to read this article on fatigue. It explain "a little" why we feel fatigued even when our haemoglobin is at low or at normal levels.

http://www.mdsbeacon.com/

I don't check in for my blood results anymore because I feel really well. I try to keep active and I make sure I avoid those dreaded winter bugs that everyone seems to be infected with. I decreased my Revlimid dosage back to 21 days. I developed depression when I was on it full time and now that I'm back to the old dose I'm my old self again. Thank goodness! It really just shows that everyone is so different when it comes to the how there bodies cope with these toxic treatments. Anyway, I have no complaints about Revlimid. It has given me back my health. In fact I feel like a real fraud sometimes, especially lately. A friend from work recently passed away from cancer, he was only diagnosed early last year.

A month ago I completed a three day paddling race on the Murray River and even though it was challenge I felt I had reclaimed a part of my old life back.

Keep the faith and I'm sure God will be there with a answer (and hopefully inspiring a researcher to find a cure)

Rachael

Rachael,
Thanks so much for posting the link for the "Fatigue Article". Being a new MDS patient, the fatigue is what depresses me the most. I have always been very active belonging to a gym, bike riding and even Civil War reenacting. It suddenly all stopped because of fatigue. I am only starting to cope with the idea that I have a chronic blood disease. I feel very alone and depressed at times especially when reading many of the MDS articles that make it sound that my life is near over. As I mentioned, I have had 2 rounds of treatment with Vidaza since my platlets are low as well.
I do feel better after the 2nd round compared to the 1st when I could not get off the sofa. I am so glad I found this group to help me through this.

Lou

Hi Lou

The MDS Beacon is an excellent resource for current information on MDS research. I get an update at least once a week on my Facebook page. Other sites worth visiting are Marrow Forums and the MDS Foundation, both have very current updates on MDS advancements, especially Marrow Forums. The unregulated and older information on the Internet can easily overwhelm you. Recent research advancements have now acknowledged that current prognostic tools do not reflect the survival rates for the majority of MDS patients.

Feeling depressed after being diagnosed is normal, and for some it takes time to adjust to this diagnosis. It took me a year to really cope with the changes in my health and how a Bone Marrow Transplant (BMT) may change my familys life. To be honest after nearly three years I still find the prospect of a BMT daunting.

Its great that youve been able to access Vidaza. It does (for some) take months to see any results from MDS treatments. It took about four months for me to feel any improvement, but the end result is that I have blood results that are probably better than most healthy people I know. I didnt understand the impact of a low Hgb (around 10 -11) until the other day when I went for my first run (3km) and didnt have to stop. For years running has been a strenuous activity and it would take me months to build up to that distance.

On a lighter note, Civil War enactments must be fun. Im sure my son would love to be involved in an activity like that.

I really hope the Vidaza works quickly for you Lou and that you feel better soon.

Rachael

Rachel, it is so good to hear from you! I was thinking about you and wondering how you were getting along with the Revlimid. I am so happy to hear that life is more or less back to normal for you.I too feel like a fraud. I feel so wonderful with the Revlimid. My counts are all normal, in fact, I was a bit concerned because my hgb was 15.2 which is. .2 over the normal! My wbc count is 4.2 and my platelets are 268. My anc is 2.75. It is hard to believe that almost a year ago I entered the ER with a hgb level of 5.5 and an hct count of 15.3! I was in bad shape. I remember feeling such a loss of control and how frightened I was. Thank God that I found all of you because your words really helped me. I may not post often but I am always reading!

Jean- I got arenesp shots for a couple of weeks and while I didn't feel tired(just the opposite in fact) I definitely felt achy. My upper thigh bones felt like I had constant growing pains. I still get these pains with the Revlimid that I take and I too was told that it was due to the bone marrow working. I found warm showers and baths really helped and believe it or not, exercise, just walking. Feel well soon.

Rachael,
Thank you so much for your reply. As you know to well, it is a shock to get a medical diagnosis that will change your life forever. It has been 2 months and there is not a day goes by that I don't feel tears coming. I guess it is the same grieving process you go through when a loved one passes away. I also feel so alone. Most people never heard of this disorder and it so hard to tell them how you feel physically and emotionally. After reading so much negative information on the net I realized that I cannot accept everything as fact. This disorder varies greatly as we all vary greatly in age, health, lifestyle, diet etc. Finding you and the other people on this site has already lifted my spirits. I don't feel so alone. My hemotologist seems very positive with the Vidaza treatments. My Blast counts are low and chromosones are normal even though my RBC is only 2.56 and platlets about 75000. I have completed two cycles of Vidaza and assume I will need at least another two before I see improvement. I also hope if I can hang in there with Vidaza for a few years, there may be new treatments available.

Just for the record, I am a Captain in the Union Army!!

Hey all,
Wlecome to the new folks and it 's good to see other's posting. I appreciate the new resources provided. I drive my oncologist nuts sometimes asking about "legitimate" things I've found on the net or questions about research. I do caution as does he that we need to be careful of our feelings, emotions and reactions to what we read on the net. Three years ago if I had let myself dwell on the life expectancy listings I would have probably talked myself into what they said which was not all that good. In addition, I would have messed up enjoying the moments of each day that came my way. From what I see we all range from high counts to low counts, and a variety of treatments which helps us all to understand and work with our med teams.

BTW those that checked out Laura Story Blessings I'm glad you enjoyed it. That and Grace are great isnpirations.

Have a great week all. God Bless,
Mike

Mike: The video Blessings was just so beautiful. Thank you so much for sharing.
Rachael: I read the article on fatigue with great interest. When I went to see my oncologist in April, I had spoke with him at that time about how tired I get during the course of the day. That at times I just need to lay down for 15 minutes or so just to get some energy back. He said that my hgb level was 12.1 and he didn't feel that my count was low enough to cause my fatigue. The article was very interesting to the fact that fatigue is not always in correlation to blood counts. I do plan to ask my oncologist about this again when I see him in October for my checkup.
I am so thankful for this blog and to all of you who share your stories. It helps knowing that if I have a question or issues or just need a pick me up. I can come here and read the posts and it helps knowing that I am not alone.
Have a great day to all!

Well I'm scheduled to have my stem cell transplant next Friday the 29th, that's my admission date. I hope this works for me.

Fantastic Laura. You know you are and will be in our thoughts and prayers.

Mike

Good luck! will be praying!

Laura, how exciting! And scary, I'm sure. I do hope you will report on the transplant procedure here so that others waiting for one will have a better idea what to expect.

My own counts are still about the same, & like most of you, tiredness is my main complaint.

Posh, glad to know you're lurking...

Best of luck Laura! You are in our prayers!!