Features of MDS
November 10, 2017 at 1:17 pm #34518Barbara PlasenxciaParticipant
Hi, I am a 24 years old woman, since I was a child I always had sore throat very frequently. When I was around 18 years my doctor discovered that my white blood cells count was low, and since then they have kept the same way. Even though I barely have throat infections my WBC count is still low. Right now it’s around 2.4 and the normal range is 4-10. So I went to a hematologist and she made me a bone marrow aspiration and biopsy and she said that I have SOME FEATURES OF MDS. She said that there is not medicine for that because it’s FEATURES, but still I need to know if there is something because I don’t want to get worst. And one more question is, can I still have kids without any risk? Please answer me those questions, I will appreciate it.
Thanks.November 10, 2017 at 10:38 pm #34520rarParticipant
What are your platelets and red blood count? Your hematologist should be able to tell you if you have MDS. Is she also an oncologist? It might be wise to get a second opinion. 24 is young for MDS but not impossible. It may be wise to wait on kids until you have MDS sorted out. 2.4 is out of range for WBC, but not critical. Mine was as low as .2.
RayNovember 10, 2017 at 10:54 pm #34521Barbara PlasenxciaParticipant
My Res blood cells and platelets are ok, I have no problem with that. It’s only my WBC. And yes my doctor is an oncologist. She just told me that the results on my biopsy is Features on MDS, because cells are not maturing well. But that worries me a lot. And I don’t know if this is something that can be cured
November 11, 2017 at 2:41 pm #34523rarParticipant
- This reply was modified 2 years ago by Barbara Plasenxcia.
If you are worried get a second opinion. The cure for MDS is a stem cell transplant which is used on high risk MDS.November 14, 2017 at 12:48 pm #34534staceyParticipant
I was diagnosed in 2004 at the age of 34 with 5q- MDS when I was on prenatal vitamins hoping to have children but was found from a physical to be very anemic. My hemoglobin (and corresponding RBC) was affected and one other blood line, I think the platelets. At that time, I was offered 2 treatment plans, and I chose to go on Revlimid which was a clinical trial drug (10 mg capsule) then.
Unfortunately I had to put my plans for children on hold because I couldn’t get pregnant on the medicine (it would cause birth defects). I was also told back in 2004 (and maybe things have changed, you’d have to check) that if I underwent a bone marrow transplant instead it would involve total body radiation which would affect my ovaries and make me unable to bear children. That second treatment option would have meant I needed to store my eggs beforehand and get a surrogate to carry the child. So I chose the 10 mg Revlimid daily capsule instead and had hope that someday I could go off the medicine to have children once my blood work was normal again.
In 2006, when my hemoglobin was high and all my bloodwork (including platelets and whites) was back to normal from the medicine, I talked to my husband and doctor about going off the medicine to have children. I asked my doctor if my children could possibly get MDS, and she seemed confident I wouldn’t pass that gene on. (The few cases of MDS that run in families tended to be environmentally caused).
I won’t go into all the details, but through a lot of praying, good eating, rest, low stress, and more hoping and praying, I gave birth in 2008 to very healthy, identical twin girls who are now 9 1/2 and show no signs of MDS, thank goodness. Towards the end of my pregnancy, my hemoglobin started to trickle down again, and immediately after my C-section, I needed a transfusion of 3 units of red blood cells.
Since you are so young, you do have time before getting pregnant. I strongly encourage you to talk to your oncologist and primary care doctor and your ob/gyn about your lower white blood count and find out how that would affect you getting pregnant before trying to have kids. One question I have for you — can you currently go 10 months without antibiotics for infections? Because there are probably certain antibiotics you might not be able to take in your first trimester if you would get a bacterial infection, for example. You should get a plan in place that if you would get an infection while pregnant, what could they treat you with that wouldn’t be at risk to the baby?
Interestingly, pregnancy increases your blood volume and you might want to discuss how they expect that change to affect your counts, particularly your white count. Would they expect it to raise your white blood count (or lower it or remain the same)? I don’t have a medical background, so I don’t have the answers to these kinds of questions for you. But I would make sure I got my white count to normal first (unless that is impossible for you) and a plan in place and all my questions answered first from those doctors. They should be able to give you some information.
One more thing. I recommend you ask your doctor for a script for monthly blood work and request a copy of the results mailed/faxed or available online to you when you go to the lab. Stay in the loop there and keep on top of your counts in case things change when you ever do start to try to get pregnant.
And…. good luck! I am rooting for you and hope things go well! Let me know if you have any questions. Take care.
-StaceyNovember 22, 2018 at 9:13 am #44507katie hallParticipant
Hi Barbara, I am 27 and I was diagnosed with MDS RMCD 7 years ago (age 20). My MDS is currently “watch and wait” meaning I have the condition and my counts are below normal but not low enough to cause too many problems or need treatment.
I believe there are many patients on watch and wait for years, or on minimum treatment for years.
I am also worrying about future children, I think pregnancy is fine and closely monitored, I dont think there is much research on whether it can make your MDS worse, well I can’t find any anyway!
However, I don’t think MDS is hereditary, but there is new research to suggest that certain genetic defects can cause MDS, and those defective genes can be passed on to any children you may have. There’s also the chance they have the gene but it doesn’t cause MDS at all, or it could cause other illnesses, there is no way of knowing which is a shame! If you are diagnosed with MDS then they should do genetic profiling on you and then I believe you will see a specialist on this. My genetic defect is GATA2.
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