Hi! I’m Kathleen 29 years old from the Philippines. I’m currently 27 weeks pregnant and my hematologists considers I might have CML because of the results of my FISH BCR/ ABL. 11% BCR/ABL is detected on my blood. It worries me about how it may affect my baby. Anyone here who’s pregnant? I really need support right now.
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Pregnant and Suspected to have CML
Sorry to welcome you into our club. I was diagnosed with a very high bcr/abl a few weeks after giving birth. This means that I had cml throughout my whole pregnancy (at least.) My baby will be 2 this summer and he’s doing great. No issues. I would say the biggest issue for me was emotionally. It was not easy to process my diagnosis while trying to bond with a baby. Please feel free to message me with any questions!
Hi! I still don’t know how this site works and how to message you so i’ll just reply here.
That’s the biggest issue i’m going through right now as well. Aside from knowing I might have CML, I am worried about my baby. That’s why I enrolled for cord blood banking. Even though it’s expensive here in the Philippines since we do not have public banking.
Sorry to hear about your news and welcome to the club nobody wanted to join. I'm no expert, but just a CML patient myself, and I'm sure others will answer your questions more thoroughly, but here is my understanding:
As far as I know, the presence of BCR-Abl means CML. From what I've read, the level of BCR-Abl doesn't always correlate with how advanced the CML is - that is more related to the presence of blast cells in the blood (these are immature white blood cells), spleen size and symptoms such as night sweats, easy bruising and left abdominal pain caused by the enlarged spleen. I was diagnosed with BCR-Abl of 72% but I was VERY sick, with all sorts of symptoms.
I am not sure how pregnancy is managed but I'm certain that your doctors will be able to find a way of keeping both you and your baby safe. This is a slow-moving disease, but obviously has to be treated. You will surely not be the first person to be diagnosed with CML during pregnancy and there must be a way to manage it! I wish you every success.
The one take-away I want to give you is that this is a very manageable condition. I honestly thought, at the beginning, that my life was over... but five years down the line I'm still here and doing much better.
Good luck from South Africa
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Sorry you have to deal with a diagnosis of CML, especially when pregnant, but your are not alone and please be assured that this will not affect your baby or your ability to get pregnant in the future. CML is NOT an inherited disease so you cannot pass it to offspring. Over the years there have been many women who have had healthy pregnancies and managed the disease very well. The only issue is that when you start TKI treatment you will be advised not to get pregnant as the TKIs can affect the foetus. It seems in the first trimester (first months) there is a higher risk of foetal abnormalities - that is higher than the normal rate seen in the non-CML population. This is why the advice is (for women/but not men) that you should use contraception once your treatment starts.
If your doctor has tested for CML and found that you do have evidence of the BCR/Abl protein (caused by the abnormal fusion of chromosomes 9 and 22) I am afraid it is pretty likely that you do have CML. The treatment is very effective indeed and the vast majority of people diagnosed in chronic phase go on to live out their normal life-span.
If you have any questions at all then please let us know on this forum. You will find a lot of help and support here.
Thank you so much, Martin!
Your words encourages me. I most of the time overthink about my condition. Hearing from you makes me less worried.
I actually don’t feel any symptoms right now. I just found out about this when my OB-GYNE noticed my white blood cells are consistently high. Above the acceptable range even for pregnant women who usually have high WBC. That’s when she referred me to a hematologist.
Thank you so much, Sandy!
That’s good news to me. I get worried lately most especially for my baby not just for me. I feel guilty that I might give him a condition because I’m not healthy. But thank you for letting me know healthy pregnancy is possible. Right now my doctor just monitors me thru blood tests since treatment is still not possible right now.
I am wondering how is CML being treated? Is it just thru oral medications or operations necessary?
It is treated, for most of us, through oral medications that are taken once or twice a day. The medications have a very high success rate and, even though they can't cure the disease, they keep it under control and there is a very high chance of a normal life expectancy. Some lucky ones can even come off the drugs after a few years of treatment, but that depends on many things.
Sorry to hear about all the worries you are having at the moment. I completely understand as I was diagnosed with CML when I was 14 weeks pregnant with my second son. That was almost 19 years ago when I was 34 years old and my son is now 18 years old and absolutely fine.
I know how worrying it is but there are ways to manage your diagnosis through pregnancy (such as Leukapheresis) and you may by now have had those conversations with your haematologist.
I am always happy to chat if you need any more information.