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Pregnancy and Glivec

I have reposted this from another thread from last year.

Sandy

Submitted by Martha Stuart-B... on Mon, 2008-08-25 20:14.
Hi, I am 30 and was diagnossed with CML in November last year. At the time we were hoping to try for another baby but my specialist said it would be too risky. After months of trying to push this at the back of my mind I find it hard to stop wanting another baby. I really do not want to give up on this. I know there is some hope somewhere. I did find the blog on glamour very useful thanks.

Hi Martha,
Please take a look at another thread on this subject on page 2 of this forum... scroll down the page until you come to a post from Sharon Morris who has just had her second baby girl.
best wishes,
Sandy

Hi Martha
Just to let you know that there are so many of us out there looking for info. (I am a regular on the Glamour blogg). I was diagnosed with CML at 12 weeks pregnant with my son 3 yrs ago. My son is healthy and I really do apreciate that but I always assumed another baby would be on it's way by now, but CML has put pay to that dream for the moment. Good luck with the search for an answer as we follow our hearts. Please use this blog to keep in touch perhaps between us we can find answers!
Denise x

Hi i am new to all this but looking for some answers, was diagnosed with cml a year today so abit emotional and mentally tired. My husband and i had only just got married when i fell ill and as i explained to him the other night i almost feel like i have been in prison since, with someone telling me when i can get out. We are at MRI in manchester and although i know that Glivec is doing a wonderful job i am desperate for a part of me to be here. We have been through all the fertility checks and we are all good but i sometimes feel that i ignore that this drug has given me a channce, i dont i just want to get on with things. Has anyone got pregnent whilst in remission and if so how does it work? Is there hope? i need to ove on and feel that i need to take a chance.

Hi everyone and happy new year. Sorry did not reply sooner. Today I have decided to give it a try to get pregnant while having CML. I know it is a decision we have played around with for a while. I will be seeing my specialist on Thursday and I will chat to them about it but I know what their answer will be, but its worth a try. I have been off Glivec for two weeks now as I do not seem to tolorate it very well although I am only on 200mg daily.

I am taking this chance now as I believe that I have many more years to live. I'll keep you posted on what is happening.

Cassidy62 never give up hope it is what keeps us going CML or no CML.

Hi Denise,

I have been on Glivec for a year now and have not received a full response to it. I could only tolorate it at 200mg a day though. After my biposy in November last year it turns out that Givec is not working for me. I have been of it now for almost 4 weeks and feeling great still. I am having to take iron tablets daily as my iron levels were seriously low.

Turns out that now my only options are to be tried on Nolotinib or to have a BMT. I'd be keen to go for the BMT if I could get a donor as I have no siblings.

As of a few weeks ago my husband and I decided to try for another baby while I am not on any meds. We will know in a few weeks if I am pregnant as we had such a small window in which to try. Spoke to my consultant who also said use this opportunity while not on any meds but she also warned me that if 4-5 months into the pregnancy my CML got worse then i'll end up having a really tough decision to make. I am hopeful and keeping strong as I want this baby so much.

I will keep you posted.x

I've been off Gleevec since the 9th of January and taking my iron tablets daily as I was severely anaemic. I am now 7 weeks pregnant and so far so good. Doctors say thay will monitor my bloods and I will then get to see them if they need to talk through stuff. I am very happy about the pregnancy and I will keep everyone on here posted on how things progress.

hello, i've been taking glivec for 8 years now and feeling fine, my pcr is very low, even though i never reached zero.
i have had 4 miscarriages over the past 8 years. last one last year, baby's heart stopped beating at 3 month. it's heartbreaking, the drug that is saving my life is preventing me from really living my life. i have come to terms with the miscarriages, but sometimes i get very upset. We would like to try again, but i'm scared and not sure if i could go through it another time. sorry, not very uplifting message. .. maybe we try again..

Hi Claudia, I am so sorry. It must be really hard for you. Do you have any other children? I am so scared at the moment as I really wanted to try one last time before giving up on having a baby. I had been off Glivec for a few weeks when we decided to try. I am not sure how things will go but I have strong faith in God and if this is not meant to happen then it won't.
Before deciding on the pregnancy the doctors had told me that Glivec was not working for me anyway and they are currently considering Nilotinib or a BMT. The are leaning more towards the BMT but I have no siblings and I am African- Caribean so likely hood of a match very slim.
I pray everyday for the health of the baby because I cannot remember the last time I wanted something this bad other than a cure for the CML.
How is your partner regarding the pregnancy? My husband is still worried that he'll lose me and have to look after the children all by himself.

Thanks for you message.Miscarriages are difficult anyway and most of the time we do not have a drug to blame. In our case it happens and we think its because of the drug that we are taking and we think- we have been pre-warned about getting pregnant but it all falls to deaf ears coz all we can see is the baby that we so desperately want.

I am keeping hopeful and will still put my updates on here. Hopefully someone will benefit from the information that they get on here. keep strong.

i'm 10 weeks pregnant now and apart from my morning sickness i'm ok and taking loads of rest. Still off the Glivec and my bloods seem fine. Having my next bloods done in 4 weeks.

I am now 19 weeks pregnant and have been ok. Baby is growing well and my bloods are actually getting better as the pregnancy progresses. I wonder if anyone has had the same thing happen?

The only abnormal trait in my bloods is my platelets which are now 718 but my doctors said is more due to the pregnancy.

35 weeks pregnant now. Counting down the weeks. Doctors were worried about my WBC which was up last week but have decided not to give me any treatment at the moment and monitor me weekly. I am sure God is on my side so we are hoping for a straight forward birth.

Plans are for me to go on Nilotinib after the birth as I did not tolorate Glivec.

Thanks for posting this Sandy. It is interesting to see how other people have fared.

We have been to Manchester St Mary's MRI to see the fertility people and they have done some tests. They advised that the haematologist at Trafford General should let us in on his plan for my treatment. I am due my first PCR test on Wednesday so I guess that will inform us on how well I have responded to the Glivec. Have been feeling really tired since going back to work full time so I am back to 3 days a week again for a while.

I think u take a good decision.
sriti jha