Hi Everyone!

[flowerlady]

I was diagnosed in June of this past year and at the time my only true symptoms were severe bruising, frequent infections and a feeling of having run a marathon each day. I was very tired but, figured it was due to the fact that I chased kindergarteners all day sometimes rather clumsily, and we had just had our son and daughter married in the previous year.Oh, did I mention I was in the middle of planning my parents 50th Anniversary Party, too? I am the worrier, and try to fix it person of my family which includes my incredible husband, 2 (now married) children, my parents and my husbands mom. Well, after one sinus infection after another and the concerns of my family and coworkers due to the bruising, I went to my Primary Care Dr. who upon seeing the colors and sizes of the bruising immediately ran a CBC, and also took a chest xray. Big confusion on my part as I truly didn't have time for all this nonsense. Well, as I am sure many of you have also found out sometimes we have to give respect to the "nonsense". Next day phone call to my classroom to suggest a visit to a Oncologist/Hematologist a.s.a.p....The rest is kinda a fog, low platelets...44,and other lows just under normal. Hmmm... really was a kink in my plan. 7 months later learning about the miracles of Revlimid and a dear brother who is a perfect match for a down the road SCT. But, I am trying to figure out if I am supposed to feel sore and tired as much as I do. Kinda whooped most of the time!! Some days I am still my old self but, there is no way to plan it. Major lifestyle change! But, with so many things working in my favor I continue to work hard at learning all I can and try to remember to count my blessings. Of which, finding this site and some of the kind people I have already spoken to are! Question is though, is it normal for me to feel this way...tired, short of breath and soreness in my muscles and chest? Are these normal signs of the anemia? Thank you all for your kindness, I don't feel so all alone now.

[Vernette]

All of the above and some over 80 aches and pains also!! I am on Aranesp and B-12 shots for two years now. Don't take any chances with infections. Don't go into a hospital if you have a cut or open sore anywhere. I did and picked up a staph infection that about did me in. Don't over tax your self. Take time to relax. Good Luck with the 50th Anniversary. Did one for my parents in 1970. Good Luck with everything.

Vernette

[Zoe's Life]

Flowerlady,

When my hgb drops I have all kinds of symptoms: achiness, sensitivity to pain, depression, thoughts of dying (not suicidal, just expecting death), weird dreams in which I am sleeping (I mean, you must be really worn out if even in your dreams all you can do is sleep). My platelets run normal to high so I haven't had extreme bruising, but I do bruise more easily when hgb is low (don't have a clue why). My whites still kick butt and I don't get sick often.

You have a great attitude! It will get you far.

Zoe

[knstone]

Sorry to hear of your difficulties, MDS is a mean disease. I've been on Revlimid for 13 months, was on Thalidomide for 2.5 yrs prior to that. I'm doing great at present.

You havn't mentioned your Hgb or Rbc. Normally a normal Hgb will not result in shortness of breath. When my Hgb was at 10.7 I noticed my breathing rate was higher for normal exercise. At the mid 13's Hgb presently I have no shortness of breath; however, I find I tire much faster than before I had MDS.
If I work "hard" around the house in the AM, I'm usually tired by mid afternoon.

Have your counts improved on Revlimid. My Rbc and Hgb improved almost immediately; however, the platelets and WBC remain a little below the normal lows. This is a characteristic of Revlimid.

Hang in there and let the Revlimid work for you.

[Dick S]

I just found this site today and glad to see others feel "spent" like I do. My attacks of extreme and I mean extreme fatigue seem to come and go. I used to have two good weeks and two "bad" days, now it seems to be in reverse.
Thanks for knowing I am not alone.

[flowerlady]

Thanks to those of you who offered your support in your messages! Yup, the counts are starting to slowly climb back up, wbc is lagging but what is really amazing to us is that we were told the Revlimid most likely would not be able to help my platelets,due to another abnormality, but they are increasing in warp speed! I too, try to plan my major activities for the a.m. and then kinda settle down for the afternoon or visa versa if I have something special going on in the afternoon. I still am a bit paranoid about getting sick though, and am probably driving everyone around me a bit crazy with the germ stuff. Also was wondering if anyone has visited Dr. List in Tampa at the Moffitt Cancer Research Center..think I have spelled it all correctly...please excuse if I haven't. We are considering relocating to be closer to Moffitt and would be interested if anyone receives care there. We are in Georgia and do not have an MDS Center of Excellence here that we are aware of. Very pleased with our Dr. here but just curious.

Flowerlady

[Marrowforums]

We don't know of a center with MDS specialists in Georgia. As you know, the H. Lee Moffitt Cancer Center & Research Institute is in Florida. There's also the University of Alabama at Birmingham Comprehensive Cancer Center in Alabama.

You can judge the relative distances on our Treatment Center Map, but getting the best treatment is the most important concern.

[flowerlady]

Thank you for that information. We will study those options as well.