I am 35 and I don't have a HUGE desire to have children but I worry I may want to before I'm too old. I am not in a position financially to freeze my eggs or anything like that. Can you even have kids once you have CML and are on Tasigna? I'm too scared to ask a doctor because I'm scared to hear that final "no". I don't really WANT children (I work with them all day as it is lol) but the fact of having the choice taken away from me permanently scares me.
Has anyone had a baby after being diagnosed with CML?
Posted 26 March 2012 - 11:24 PM
Hey again, I feel like I'm stalking you on LLS tonight lol.. Here is a "blog" by Erin Zammett Ruddy, if you don't trust the link (I understand it's the internet lol) you can google her name and CML glamour magazine writer and she will come up.
She was diagnosed with CML and she has children, I was presented this blog (sadly she does not write anymore) but when I was upset about the kids thing and wondering if I could... This will bring light to your tunnel : ).. I def did all my homework and know a lot of good resources if you ever need a pick me up or information. I mean I'm no Trey lol cause that man is very knowledge on CML but I like to know what i'm going into before I get there so I've done a lot of research... but I know the feeling of being told you cant have children is extreamly hard, I've recently been told that and that I can not freeze my eggs... but this is because I'm going into transplant aka makes me fertile, and I can't freeze eggs cause my numbers are way to high doctor said to risky.. Know it's never not an options until you've tried everything you can!!! I am a single gal, support myself and eveything else but when you freeze your eggs LiveStrong has partnered with SharingHope and they actually help you with paying for the process and are very very helpful with that as well as finding emotional / financial support... Again just message me if you ever wanna talk or want some of these other links I have : ) lol.. Kids were so so so important to me and I did everything in my power to try and get them or see if I could in the furture because I'm only 26...
Prayers to you hun
Posted 27 March 2012 - 12:46 AM
The short answer is you can do it. In my opinion and that of the medical profession you shouldn't do it while on treatment, people do mostly by accident but there are real risks to the baby.
The choice hasn't been taken away from you but it's not as easy as it used to be.
The links that Trey posted in this thread might help: http://community.lls.org/thread/11015
And this one that Lucky posted is a nice story: http://community.lls.org/thread/13437
If you have seen some of my posts you can see that we will try. We were told that we have a 50/50 chance for a whole range of reasons.
My fertility specialist treats gleevec like baby poison and I assume that Tasigna would be treated the same way. She wants me to have a long washout period (2 months) starting last week. The paper that Lucky linked to had a short washout period.
I don't think that you necessarily need to freeze eggs or go through IVF. However, you would want to know about your (& your partners) fertility before committing to stopping treatment.
From memory you have had a great response to treatment so far so stopping treatment may be possible for you.
I have to say that going off treatment is nerve racking, I wish I was a cool unflappable dude with ice running through my veins.... it's something I'm still working on. In the mean time I'm watching my husband get all worked up about his job interview tomorrow and it is strangely relaxing. Don't get me wrong, I really really want him to get the job but being stressed about something normal is keeping my mind off the fact that I'm no longer on treatment.
(btw I love your online name) it sucks that you are too risky for egg freezing. I don't know what else to say, it just sucks (((hugs))).
I have spent a lot of time talking to a lady who lost a pregnancy through brain hemorrhage and medically isn't able to try again. She has come to peace with it all, she says it is no longer the big gap in her life that she thought it was. That could be me and my hubby soon too, and it still looks like a bloody big gap to me. I know that you have to move on to transplant and for now you will just suck it all up and keep going... but I wish you didn't have to. From your tumbnail pic: yes you are strong!
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 27 March 2012 - 02:54 PM
Thanks Jig . It's been my "nickname" forever.. It is very hard and I hope to come to peace with it too. Thank you for sharing about that lady with me. I will pray for good outcomes and little feets in your soon future !!! Yes it is weird hearing others get worked up and stressed out about thems that seem so small once something so big hits your life... I know you will do great off gleevec and god will be with you keeping you safe! You got this ;-)!!! Keep us posted though I have good feelings
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