[Vicki K]

Hi, this is my first time posting here, I have been lurking for several days and finally feel the need to post and ask questions. I currently am awaiting a visit with a hematologist, and I have another 8 days before this appointment.

I am currently a Stage IV Leiomyosarcoma ( LMS) patient ( it is a very rare smooth muscle cancer, even rarer that it was in my uterus), diagnosed almost 3 years ago. I had my original surgery ( hysterectomy) to remove the tumor, and adjuvant chemotherapy. Last July I had surgery to remove a lung metastasis, which puts me at the stage IV. With LMS, once it metastasizes it is likely it will show up again, and so I am always readying for battle.

I am seen every 3 months for CT scans and Oncology visits, and for over a year now we have seen my blood counts go low. Some have been hovering at low normal, until the past 6 months when they dipped lower, and some have been low but stable. My oncologist has many times discussed seeing a hematologist, and has also mentioned the possibility of MDS. I was feeling absolutely fine ( I happen to be a personal trainer and fitness instructor, so I am very active and health conscious! As well as stubborn and not wanting any more medical interventions than I already deal with) Well, the last two months or so I am not feeling fine. I am actually exhausted most of the time, only feeling better immediately after teaching a class, which are getting harder and harder to get through! However, it seems after any activity I need hours of rest and sometimes cant do much for an entire day. I have shortness of breath, dizziness, headaches, excessive night sweats which have become more frequent, strange itchy rashes popping up and a need to chew ice ( which I only realized after someone pointed out that I am doing it and it could be due to low iron?)

I just saw my oncologist again two weeks ago ( CT scans clear thank goodness!)and he immediately referred me to the hematologist. Anyway, I am so frustrated, my counts are not as low as so many I see on here, however I have read that if it is MDS it is the Cytokines that cause the exhaustion as opposed to only the HGB. I also know that having had chemotherapy (gemcitibene/taxotere..... taxotere seems to have a relatively high number of people who have subsequent MDS) puts me at a higher risk for this.

Anyway, I am so inspired by so many of you and so confused as to what's happening to me. I am posting my last 2 sets of labs ( just the abnormal results), any insight is more than welcomed!

I feel better already after writing this. I honestly can't believe I could possibly be developing a second cancer. Ugh.

3/12: wbc 2.9 rbc 3.76 hgb 11.7 hct 32.6 mch 31.1 mchc 35.9 plt 534 anc 2.03 alc .66

6/12: wbc 3.1 rbc 4.05 hgb 11.5 hct 35.3 plt 204 ( back to normal) anc 1.8 alc .87

Again, I realize my counts are not as low as a lot of you, but I am having these symptoms no matter how much I try to rationalize them..... seems like my wbc and neutrophils and lymphocytes are the main culprits?

Again, thanks for reading, any thoughts or if any of you started with these types of counts or if any of you have secondary MDS I would LOVE to hear from you!

Vicki