What to expect with secondary MDS?

[K Dance]

I'm new to this and haven't even been diagnosed with MDS, but my blood cts have been low for a couple of years, and continue to gradually go down. My cts are not low enough for a BMB, so the drs are in the wait and see mode. Over all my health is good, except for bruising easily, being exhausted the next day if I exercise and get out for activities, low energy, I'm freezing all the time, and have sinus infections most of the time. I've had to cut back on activities to actually save up for an exercise class I teach. So I'm trying to educate myself to stay as healthy as I can. I am a 5year breast cancer survivor and hope that's all! I'm curious about how MDS could make me feel if infact it goes that way for me. I have researched MDS and would like to know from actual secondary MDS survivors on what to look for. Please respond!

K Dance
50 years old, 4 children, and in wait & see mode!

[Neil Cuadra]

K Dance,

Let's hope your low counts are from a problem other than nonfunctioning bone marrow. What people with MDS feel is the effects of their low blood counts, with the symptoms of anemia being the most obvious. See Symptoms of MDS for a list. The symptoms you describe match those you might expect from low counts, but they don't indicate the cause.

[Heather8773]

Those symptoms sound familar. When my husband was dx it was because most of those took us to the Dr. His counts as of last week
Hgb 6.4
Plts14
He had a bmb at higher counts in November and will be having his second one this Monday (bc we are seeing a new Dr, otherwise I doubt they would do them that close)
I hope that you do not have MDS. I think the only way to dx is by bmb (I could be wrong I am not as familar w MDS) AA I believe is through bmb. PNH is by a flow cetometry test by blood draw.

[K Dance]

Good Sunday,

I've been having sore throats and tightness in my neck, with pounding headaches, it seems like for a year now. It's funny though I don't get sick much at all just aches and pains with exhaustion. It's fine with me that I don't get sick, so pretty thankful about that. I wonder if the throat thing happens to anyone else? Thanks!

[billyb]

Are u in remission for breast cancer ( what stage were u in ) or are u on a on treatment now

[billyb]

U have to remember something... doctors wont run tests ,not because they dont think its needed, but it because insurnce companys wont pay for it until it gets to a certain point

[K Dance]

I'm 5 years out from chemo treatment and was stage 2 breast cancer. I see my oncologist every 6 months. About 2 years ago my Hgb, hematocrit, started inching down and have been below normal for that 2 years. Then my RBC and platelets started going below normal, and then the next 6 month check up my WBC slipped below normal. My RDW is high. The oncologist doesn't feel like their low enough to do a BMB, so we will just wait and see. Over all my health is good so I'm fine with the wait and see mode, but all the info I can get is helpful. Thanks for your input.




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50 yrs old, breast cancer survivor with anemia, and on tamoxifen

[slip up 2]

KDance....you might want to get an appointment with a Haematologist/Oncologist.....Kate

[billyb]

Remember, everybodys situation is different, like Neil said, there is alot of good information out there, along with the folks on this site who can share there experience, strength and hope with you. The things you have talked about could be a wide varitiey of things: From being 50, to long term radation effects, to long term chemo effects and so on.

[Cheryl C]

Hi Kdance - I frequently feel a sore throat coming on a few hours after I've been with groups of friends and receiving/giving lots of hugs (my white cells are my worst problem). What I do is take a 5000 mg capsule of Echinacea (a natural immune system booster) and 99% of the time it fixes the problem. Sometimes I need to take this dose 2-3 times within a 24-48 hour period before the soreness completely goes. It doesn't increase my white cell count unfortunately, but I haven't had a cold or flu for more than 12 months which is pretty amazing for me.

[Heather8773]

if your counts are going down and your experiencing more symptoms I agree w advise previously given about seeing a hematologist/oncologist. Having testing done to know what you are or hopefully are not up against may give you peace of mind and if you need to start looking into treatment options.