Hi,
I have read a few of the posts about pregnancy and saw that when trying for a baby you should stop taking glivec 3 months before, is nilotinib different to this as it takes 36 hours to be out of your system?
Also just wondering if there is anyone on here that has had a baby who achieved MMR but not cytogenetic response?
Thank you and best wishes x
Hi,
Prof Jane Apperley at Hammersmith advised us that the Glivec would not take long to be out of your system and that it would only be necessary to wait for a week or so. I presume that Nilotinib will be similar but best to confirm with your doc.
We have decided to wait until Sept and then consider coming off the Glivec and getting pregnant. At the moment my results are still not quite at MMR after 19months treatment on Glivec. In fact, at my last appointment the consultant mentioned changing to either Nioltonib or Dasatinib. I will have to read up because I feel like I cope well with the Glivec and I don't want to change for the sake of trying to get a perfect result at the expense of suffering worse side effects. Also, I need to look into the implications of changing and stopping for 9 months. However, I will probably give it a go because I want to get the best result I can before stopping for a while.
I think there are lots of people who have had babies when they have achieved different stages of response. There seem to be quite a few studies on the internet, so it is confusing. Please can you post what advice you receive from your hospital as I think there are a few of us in the same situation?
Thanks,
Stella
Hi Stella,
Thank you for replying I have been advised to wait until i get to 0% but they will support me if i go ahead and try for a baby now i am at 0.03%, I really want to go ahead but I am obviously worried about what affect this could have on my results and I dont want to have any treatment as I wouldnt want to harm the baby. Another option i was told about was to come off the treatment and see what my results do over 3 months but i feel this is wasted time being off the drugs because there is nothing to say that my results could be fine for those 3 months then in the 4 month they could increase.
i have done searches on the internet and im not sure if its a good idea for me because its so mixed and different situations that i dont fully understand.
you mention trying for a baby in september will you still consider this if you are not at 0%?
thank you
Catherine
Hi Stella,
I was just wondering if you know much about alternative diets and green tea starving cancer cells and shutting down enzymes. I plan to speak to my doctor about it.
Thanks Catherine
Hi Catherine,
I have read a few blogs and articles on the internet about drinking bucket loads of green tea! I guess I would try it if I came off Glivec for a while. I already have a couple of green tea bags with lemon/jasmine a day but most of them talk about drinking gallons of unadulterated green tea leaves for it to make any difference. It will be interesting to hear what your doctor says. At least if you did come off the drugs that would be something positive to do in the meantime. There seems to be lots of annecdotal evidence about.
I see what you mean about wasting time staying off the drugs for 3 months just to see how it goes - you might as well be trying to get pregnant.
I think we just have to wait for the right time for us and listen to the doctors but weigh up the pros and cons ourselves. I will have to see how I feel in September - I only picked it arbitrarily cos it's my birthday and I'll be 33 then. Somehow I doubt I will be at 0% by then and definately not for 2 years. I really need to discuss it further with my doc but you know how it is when it seems that they just want you out of the room asap with no time for discussion or questions. Plus I always want to out of that hospital as soon as possible and back to real life. My doc has said that the advice is to wait until I have attained 0% consistently for 2 years before stopping Glivec - but that just seems like it is never going to happen.
Some studies have had the ladies on interferon during pregnancy but when I spoke with Prof Apperley about it she said that if this was pre-Glivec days and I wanted to have a baby she'd advise that we just went ahead straight away. My haemo doc arranged for us to go and speak with her because she is an expert and I get the impression that my doc doesn't want to advise us himself as it is a bit 'specialist'. In the end it is up to us but there doesn't seem to be too much information about.I am trying to think positive because I know people have managed it well.
I live in Manchester and am treated at Trafford General. How about you?
Anyway, thanks for replying and let me know how it goes.
Stella
Hi there, I'm also looking for more information about pregnancy and what to do, as someone mentioned above your doc's appt's are really quick and they try and rush you out the door before you can ask anything and I suppose I'm still a bit hesitant to ask the question when can I have kids if at all. I also did a bit of research on the net and had mixed results as well some not so good stuff out there. I've been on glivec for nearly 2 years now my doc originally told me not to think about it for at least 2 years but I would like to know what options there are as I would really like to have kids in the near future. When is the right time and what do my levels have to be they are not at 0%, or can you try when they aren't as low as zero? Any advice would be great or if anyone that has had kids.
Hi Ladies.
I read your posts with interest because I found out I had CML whilst trying for a second baby (inability to conceive was one of the things that sent me to my GP).
I read about a study of 7 patients with CML who interrupted therapy for pregnancy (Jane Apperley from Hammersmith is one of the authors.) This seems to suggest that it is important to achieve MMR before you interrupt therapy for pregnancy as this could have an effect on your outcome after reintroduction to Glivec.
We have decided not to have a second child which has been a hard decision to make but I am sure if we did not already have a child our decision would have been different.
I wish you all good luck and am very interested to hear if anyone out there with CML has had a break from therapy to have a second baby?
Kate
