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Brestfeeding on Glivec...

It's a long story by now. I was diagnosed last year on 13th of Oct when I was 22 weeks pregnant with my 4th child.

While pregnant I had sessions of Leukapheresis 3 times a week for 5 weeks which hardly brought my WBC count below 100. Since my husband discovered that EGCG in green tea may help I started drinking it on regualr basis and my blood count went almost back to normal and remained stable till around 6 weeks after giving birth to baby who was born at home 41 weeks of gestation, not via c-section at 34 weeks as doctors were predicting. I refused treatment for as long as it was possible up until my WBC went back up to the level when I was diagnosed and my spleen got enlarged and started hurting. Using any altenative medication related to CML I could find I did manage to brestfeed my baby exclusively for 5 months. I got on glivec 3rd of July and I've not stopped brestfeeding altogether though I reduced breastfeeds as much as I could and she gets bottle feeds and solids during the day and 2 to 3 breastfeeds at night.

I'm still terrified. I keep checking her all the time, paranoid she may die in her sleep or something. I feel like it's all going to be fine and Miatilda will not have any long term problems but maybe it's just wishfull thinking. I only decided to continue breasfeeding after I read a medical report of a 41 year old woman who chose to breastfeed her only baby she had and she was on glivec. In the end her baby was a tiny newborn and she still did it.

What am I supposed to do?

Anna

Hi Anna & many congratulations on the birth of Matilda, I so love that name!  My understanding is that Glivec should not be taken whilst pregnant (as you know) and also not whilst breast feeding. Have you discussed this with your consultant? He would be in a better position to advise you. Sometimes the manufacturers ere on the side of caution & I wouldn't worry to much about your daughter. Hope this might help.

Wishing you all the best

Ali

Hi Anna,

First off I wanted to say congratulations on becoming a mum with CML- must have been a really emotional and upseting time for you, especially when you're going through something like pregnancy, childbirth and maternity.

I also think that you've been brave concerning the breastfeeding and I agree with your reasons as you've laid them out.

Your logic is based on good advice and you've not taken the decision lightly. It's balanced and not overly paranoid, but I'm not a medical person, so I think that you just need to get as much information as you can- from trials, manufacturers, your own specialists and from forums like this- have all the facts and then make a further decision. It sounds like this is the approach you and your husband are taking and I think it's all you can do.

You should be really proud of breastfeeding for 5 months. At the end of the day any number of things might happen to a baby, or they may not. And that may have something to do with your direct actions, or it may not. You can never really tell. All you can do is educate yourself and mke the best decision you can with the info you have to hand.

People in our position know only too well the fragility of life, but it sounds to me that you're already demonstrating great parenting skills.

Best wishes-

Adam x