[Afreemanswife2]

I am 56 years young and have been diagnosed with 5q-MDS and have been going to MD Anderson in Houston since October of 2013. Was diagnosed in 2011 but, transferred from a private Oncologist to MD Anderson.

MD Anderson, The Leukemia floor is where I go to see my doctor and fast track for my blood work. The doctors and the staff have all been great. I see people from all over the world there.

My blood work last month was (Neutrophil Abs 0.52 K/uL, WBC 1.7 K/uL, RBC 3.17 M/uL, Hgb 10.4 gm/dL, Platelet count 62 K/uL ). I will have my next BMB next Tuesday to check for mutation. I am currently taking Revlimid 10mg per day. Mine is not high risk like husbands is.

Patricia

[Afreemanswife2]

I was diagnosed in 2007 with ITP then in 2012 was diagnosed with MDS. I too deal with a lot of pain. Mine has a lot to do with arthritis. With my immune system low it seems to have gotten aggressive. I dealt with the pain a long time before I went to the orthopedic Dr. about it. They prescribed Tramadol which I use at night so I can get some rest.

Patricia

[Afreemanswife2]

You are correct. I am not taking any type of meds. at this time. All I take is vitimins: Calcium (Which is good for leg cramps which I get a lot if I don’t take them), D3, Multivitamins, Omega 3 and b12. My goal right now is to keep me as healthy as possible. If you know someone is sick stay away from them. And if you get an infection or start running a fever contact your doctor ASAP. Don’t let it get out of control.

Just like you I keep track of my numbers as well. It’s nerve racking waiting on BMB results to see where I am and whats up for the future. Right now the Dr. thinks that The additional aberrations may suggest clonal evolution. I’m not quite sure what he thinks it’s evolving into. He wants to keep a close eye on it.

I don’t know what symptoms you have but mine is fatigue, Freezing during the day and Night sweats and of course bruising.

[Afreemanswife2]

Good Morning Colette,
About March of 2009 I was diagnosed with ITP (Idiopathic thrombocytopenic purpura). Or should I say misdiagnosed. It wasn’t until 2012 I insisted that there must be something else wrong because I am tired all the time and my numbers started to flip the other direction that the Dr. decided to do a BMB and that was when I was diagnosed with 5q- and I had a blood Infection in which I was treated for. It took about 4 months of Intravenous Antibiotics but thankfully it’s gone. After another 7 months I decided to go to MD Anderson for a second opinion and decided to switch my medical care to them. It’s a one stop shop (you can get all the test done and see the doctor in one day).
I have been stable until recently when my numbers started to drop, the Dr. is keeping a close eye on them.

I am currently 53 years of age and have been blessed to have a pretty terrific Boss who is understanding when I don’t feel well or have to take off for Dr. visits and is a great counselor when needed and a true friend. My job has kept my from just sitting around feeling sorry for myself, It has kept me mobile. Even with Osteoarthritis. However, my life is pretty normal, I have to rest when I over do it.
I hope this helps you. – Patricia

[Afreemanswife2]

Hello, I’m new to this forum but I was with 5q- in Jan 2012. I am currently working. However, there are many times I don’t want to get out of bed and go to work.

I go to M.D. Anderson in Houston, TX. My last Dr. Visit was in May and I don’t go back until September. My Hemoglobin was 9.6, WBC 2.2, RBC 2.7. My numbers have dropped a little every 3-4 months. I am on the Supportive Care which is the wait and watch.

Thanks
Patricia

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