Possible Myelodysplastic Syndromes (MDS), and questions

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JWoo
JWoo Member Posts: 1,171
edited March 2015 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi all. 

I am having what may be symptoms of MDS, but wanted some first-hand knowledge from anyone here that has this before I start bugging my doctors about it. I am fatigued, have petechia(sp?), have started bruising easier, and have had a light cough for a few months. I figured the fatigue was the tamoxifen and post chemo/surgery, and the cough i just assumed was allergies(still may be,) but it is not gong away. The bruising is new, but the petechia have been with me since chemo, and keep getting worse. 

If you would, please describe your symptoms, how long after chemo it manifested for you,  your treatment, and any advice you may have about not only talking to doctors about it, but living with it. 

Or, could it be something else? If so, what? Any advice or info you have would be greatly appreciated. 

Thanks. 

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  • toomuch
    toomuch Member Posts: 901
    edited May 2014


    JWoo - I don't have any first hand information about MDS but I wanted to respond. You don't have signature line information so I don't know how far out you are from primary treatment. When was the last time you had a complete blood count done? If you have a new symptom, you should definitely contact one of your doctors. A simple CBC will tell you if your platelet count is low and if you have any reason to be concerned about MDS and could go a long way in giving you peace of mind. 

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  • dutchiris
    dutchiris Member Posts: 855
    edited May 2014

    Hey JWoo,  I agree with toomuch.  Being that I have had low platelets and wbc since chemo ended, I asked my onc about this.  If I remember correctly, She said that a chemo drug I was given could cause MDS but that it usually occurs years after chemo.

    Toomuch, the Sig line doesn't show up in the initial topic post for some reason.  If you "click" on her name you can see her diagnosis and treatments.

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  • JWoo
    JWoo Member Posts: 1,171
    edited May 2014

    Thanks ladies- I have an appt in the beginning of July, but may move it up. My last blood work was good, but, I am just really weirded out about the petechia and now this bruising. It is just disconcerting. (I know it is rare, but, my entire family does rare diseases and cancers all the dang time. My mom is in several medical journals. )  I finished my chemo at the end of last August. I just can't figure out what else this might be coming from. 

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  • Di2012
    Di2012 Member Posts: 925
    edited June 2014

    I have MDS......found out just 11 months after BC DX....I had no radiation or CHEMO.....and have read that if had rads or chemo with BC if one is to develop MDS it would usually occur 5 to 7  years later.  I have low RBC, anemia......funky odd shaped red blood cells......I am in "Watch and Wait" mode....so I have blood test every few months, as hemo/onc said  treatment is sometimes worse than anemia and other side effect.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited March 2015

    I have had low platelets since the end of chemo and today low WBC again! This is scaring me.

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2015

    JWoo, I have had pettechiae since I finished chemo in Nov 2013. I am about to start again. My MO has not been too concerned since my platelets have bee ok, but they are watching them. You als can ask about Von Willebrand's. It is unrelated to chemo or cancer but can presentwith petteciae and bruising. Mild cases sometimes are undiagnosed until adulthood.

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