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CML during and after pregnancy

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Hello all, I am new to this forum, but would like to post my experience for all that may be going through something similar. In early Sept 2006, I found out that I was about 4 weeks pregnant. I went to my OB for a 6 weeks sonogram, etc, and at that time he drew blood for a basic CBC. My results came back with my wbc elevated to about 130,000. By the time I was contacted by my OB, I was around 10 weeks pregnant. He referred me to a specialist, who fit me in that day... it just happened to be a Friday at 4PM. After going through my entire family history, he gave me a preliminary diagnosis of CML. The weekend that followed was the worst for me, my mother, my fiance, and my closest friend. We all cried and researched and tried to figure out what this could be and where it may have come from. It took about a week to get a confirmed diagnosis after the bone marrow biopsy and aspiration. The oncologist told us it was definitely CML and our only option was to terminate the pregnancy immediately and begin treatment with Gleevec. None of us were happy with this choice, as there were no children or grandchildren in our family at that time.

We decided to get a second opinion, which I suggest to everyone recently diagnosed with a life threatening disease. I am so happy we did, because the second oncologist (who is still my oncologist) reassured us all that it would be possible to carry the child to term. After extensive research and multiple conversations with my OB, a high risk OB, and my oncologist, we decided to go ahead with the pregnancy and treat my CML with interferon alfa 2a. It is believed that interferon does not cross the placenta, and if it does, it is a chemical that the body naturally produces so it should not be harmful to the fetus. It is considered to be a category c drug during pregnancy, which just means there is no information showing that it can harm the fetus, but there is nothing to prove that it won't cause harm. Although interferon was harder on my body throughout the pregnancy, it is considered at this time to be safer for the fetus than gleevec.

I started giving myself daily injections of interferon at about 12-13 weeks, and I continued until my 37th week when I gave birth to a beautiful, healthy little girl. My blood was monitored weekly, I saw my oncologist every other week, and eventually I saw one of my high-risk doctors every week. I felt pretty horrible most of the time that I was pregnant... interferon is know to make its users feel under the weather. I was pretty anemic, had to take a million pills a day on top of the shots, and could not pull myself out of bed somedays... but it was worth it. My daughter was a little premature, but that had nothing to do with my CML. When she was born, she weighed 5.6 lbs, and she and I were able to go home together after two days in the hospital.

She is 3 months old now and still has a perfect bill of health. I am doing much better also. Interferon never completely brought my wbc down to normal. My high was about 195,000 and my low was about 60,000. I had to get 3 blood transfusions throughout the pregnancy because of low platelets and low hemoglobin. Somehow I managed to continue working on my Master's degree, but hardly at the rate I would have if I had been healthy. After 3 months on gleevec, my counts are normal and my last FISH test was at about 30%. I'm getting close to remission!

I am so thankful that I became pregnant when I did, that I found so many wonderful doctors to help me through this rough time, and that I have such a supportive family. My oncologist, Dr. Westervelt in Saint Louis, Missouri, is such a great doctor. He always has a smile on his face when he walks in the room (which is very important when going through something so tramatic)... he always takes as much time as is needed to explain things to me... he even came to my hospital room to see me and my daughter when she was born. My mother and my best friend called me practically everyday just to check in on me. My fiance took care of me when I had no strength in my body... he would pick me up and help me to bed when I felt too weak... bring me food every morning before he went to work... and rub my legs and my back when I was in pain. And my daughter, well, she saved my life. If I had not become pregnant, then I may not have found out about my condition until it reached the acute or blast phase. She's my little angel.

I hope that my experience can help someone who may be going through something similar, and I am always open for anyone who may need information or advice.
Debra

What a great happy story ! Many congratulations and I hope that you will go into remission very soon on Glivec. IFN [and now PEG IFN] for those who can tolerate it - is a way to go during pregnancy and also the leucapheresis method of filtering the white cells every so often has proven successful. There are a few people on this site who have had babies whilst having CML.
Wishing you and your family many happy years.
Elizabeth

what a wonderful story :) made my day

rob - http://cmlblog.spaces.live.com

dear debra, many congratulations and thank you for sharing your uplifting story with us. as elizabeth says, there are an increasing number of cml patients who have successfully managed their disease throughout pregnancy.
very best wishes to you and your family,
sandy C ;o)

Thanks for that. Cheers up a yukky day.
My wife went through a bad couple of years recently (not CML) and the arrival of our grandson made so much difference to her, so I can imagine how you feel.

Well done and all the best for you and your daughter.

John

Thank your for your post, it really makes me hope. We are just recently going into the CML.
Before the CML diagnostic, my husband (he is the one is affected by CML)and I were planning to have a baby sometime next year. I think that a baby can give him a very good reason for live and fight. You are a clear example. Thanks for your message.

THATS SO GREAT
WHEN I HAVE SPOKE TO MY DOCTOR HE HAS TOLD ME ITS NOT A VERY GOOD IDEA TO COME OFF GLIVEC AND HAVE CHILDREN CAUSE THERES TO MANY RISKS !!
READING YOUR STORY HAS NOT MADE ME DETERMINED TO APPROACH THE SITUATION AGAIN AND MAYBE GET A SECOND OPINION

Hi Debra congratulations on the birth of your little girl. I was diagnosed with CML in exactly the same way at 10 wks. Everyone including my own family wanted me to terminate and concentrate on myself but my husband and I couldn't do that. We already had 2 children and this baby was wanted just as much and I saw him as my angel he helped me I should do everything I could for him. I had to endure weeks in hospital then daily visits to outpatients for treatments and I can't describe how bad I felt at a time when you should be thinking of new life we had to contemplate how fragile ours was!! I am sure you get what I mean . Anyway I gave birth last year to a healthy boy who is the light of my life. We are now back to almost normal family life. I had sensitivity problems with Gleevec and it has taken 12 mths to get me onto a full dose due a bonemarrow biopsy in 2 weeks to check how things are going. But as strange as it is life does go on and you have to look forward. Enjoy and be thankful.
All the best Denise

Thanku for posting ur expeirience with us :-) it helps ppl like me
who r up at 4 am having another sleepless night fearing having a baby
N yet wanting it soo badly :-(
Ur story is a form ov motivation for me n I bet many others
Thanku once again :-)

Hi i havent been on here for awhile, infact since my little girl was born over 2 years ago.  I have just had another glivec free successful pregnancy and Kitty Rose was born 2nd August 7lb 15oz full term.  I again came off meds as soon as i found out i was pregnant and was monitored closely.  i was undetectable when i came off and still am now after 9mths off treatment.  i Just want to offer hope to all the women out there that thought like me.  It requires alot of belief and dtermination but it is well worth it.  pleaes feel free to contact me.xx  Us women are fighting back

many, many congratutations on the birth of your 2nd baby.... and also on you negative pcr status. I am sure that the fact that you have obviously have had an optimal respons to imatinib (glivec) has helped keep your bcr/abl levels so low and so stable. You might know that several patients have maintained low/undetecable levels as part of the STIM trials.
I am sure many people will find your experience with managing your CML and having children very uplifting. Thanks for taking time out to share on this forum.
Best wishes,
Sandy

Hi Debra!
like you I was diagnosed when I was 28 weeks preganat of my first baby, as soon as I gave birth, I started my treatment with Tasigna, and I achieve molecular remission after 10 months. But now Im pregnant again, and my concern is that I was taking this medicine and I don't know if I should have this baby or not. My ONC and My OB/GYN say that I can do it, but there ir not enough information about this situation,and it may be a risk for my health and the baby, Im just want to know how was your second pregnancy, and how was the treatment with the interferon.

I am so happy that you had a success with both pregnancies. I have been diagnosed May 2006 with CML. I terminated a pregnancy in 2010 because I was on dasatinib and the Onc doctor did not recommend me to keep the baby. My boyfriend and I were disappointed but we figured that was the best thing. Even though my boyfriend was there I still felt alone. It was very heart breaking for me to be 27 and have to make that decision. Now that I am 29 (soon 30 next mth) I am ready to plan my pregnancy. My Onc doctor stated that they cannot advise me to become pregnant but will work on it with me. Your story inspired me and I hope that I will be able to post my story one day.

Hi there, I have CML and was diagnosed in June of 2003 at the age of 14. I have been taking Gleevec/Imatinib since the day I was diagnosed. I am now 26 and thinking of my future and would like to start planning a family one day.
Are there any studies/reports or other women who have already been diagnosed and wanting to become pregnant?
Did the patient receive/switch to another treatment? What were the outcomes? Side effects? Was there a full term pregnancy? Was the baby healthy? Were the mother and/or baby not effected by the treatments?
If you could please answer my questions or redirect me to a source I could talk to about my predicament that would be amazing.
I am trying to do my research on this subject - and all the reports/incidences I have been reading are women who were already pregnant and then diagnosed.

Please and thank you!
- A woman's wish

Hi,
I hope I can give you some encouragement. The known effects on the foetus from imatinib
(there is less data on the new TKIs but it is assumed that they carry the same level of risk) occur in the first 3 months - however, most doctors will err on the side of caution and advise that if you plan to get pregnant then you should stop TKI therapy before you conceive, and throughout your pregnancy. Quite a few of our members have done this without problems. The proviso is that you have a stable molecular response before you stop.

Women who do this are closely monitored by PCR and some are managed with pegylated interferon- but this is in EU countries as this form of the drug (which does not have the same level of side effects as standard interferon) is not available in the UK through the NHS. Nevertheless, if you are in the UK and you do have a stable molecular response then you should ask for a referral to one of the major CML centres who will advise you. Please contact me at cmlsupport.org.uk and I can put you in touch with a specialist in this ares. If you are not UK based then I can also advise you on who you should see.

Quite a few women have managed to have planned families -

Sandy

Hello all, it has been quite a while since I originally posted my story. I never got back on here after posting it, but I now see a few people have commented since I told my story in 2007. Just 3 months ago (April 2015), I had my 2nd child. Since I had been on Gleevec and in remission for so long, there was no need for me to take Interferon, as I did with my 1st daughter. Fortunately, I stayed in remission throughout the entire 2nd pregnancy and just restarted my treatment a month ago. My 2nd daughter was born in April and she is doing great. My 1st child, the reason I found out I have CML, is 8 years old now and also doing wonderful. I'm so grateful to have such wonderful doctors and nurses who have monitored me so closely and helped to make my family possible. There are indications now that Gleevec can make it harder to conceive, but it is still possible. Good luck to all of you out there who have CML and hope to also have a family.

Debra