5q- Syndrome

[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

[californiagirl]

If you are currently on supportive care does that mean you are not taking any type of meds right now to help increase your numbers?

Ever since I found out I was anemic and before my diagnosis I focused so much attention on my numbers. My doc said don’t worry about the numbers but focus on how you feel, but it’s hard wondering if the little tick upward or downward is a sign of stability or another downward trend. Before my diagnosis I thought it might be b12 deficiency (321) and started taking a b complex supplement and it actually helped somewhat with some other symptoms I was having especially the “swooshing” noise in my ear, but it did not bring up my counts up too much. So after 3 months I decided to do the BMB. And here I am.

Now I’m trying to move forward and adjust to my life.

[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.

[californiagirl]

Thanks for the advice. Right now I have low RBC,normal low WBC, and normal high platelets. I get hot flashes throughout the day/night, but doc says it’s not related and is probably hormonal. I get a little fatigued climbing long flights of steps or hills. I’m still pretty active, in fact, I feel better when I’m active than when I’m sitting still. I think I felt better before I knew I had it! If I never had a CBC I probably never would have found out until later when my hemoglobin would have dropped even lower. I was always too busy working than to find time to take care of myself. I’m waiting for an appointment at Stanford for a second opinion about watching/waiting vs starting on some kind of meds.

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