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Fathering a child on Imatinib

Hi, I am a new member but been closely following this site since my husband was diagnosed with CML in November last year.

As it was for all of you his diagnosis was a huge shock, discovered by having a standard eye test! He was 29 years old when he got diagnosed and otherwise very healthy.

As an additional blow, having been married the year before we were in the process for trying to conceive our first child. Due to his very high WBC at the time they told us there was no time to freeze any sperm either. He has since been on 400mg Imatinib a day and doing very well. We're still awaiting his 6 month PCR back but we've been told hes hit all of the doctors goals for progress so far.

His doctor has been brilliant however we are struggling to come to terms with the fact we cannot continue trying to conceive. The doctor has said it's unsafe for the foetus whilst he is on Imatinib, however everything we have read online suggests otherwise. I can't find any examples of abnormalities but just healthy babies when the man is on Imatinib.

Even the research on the Novartis website doesn't say this is an issue.

We are planning to go visit our GP to discuss getting further opinions on this however I'd appreciate any information anyone has on this? I know there's lots of posts already I just don't always understand a lot of the terminology so wanted to double check the advice.

Thank you in advance. Best wishes to you all. Jenni x

Jenni,
There have been several posts recently on this subject. As you are in the UK you can request a second opinion to set your minds at rest- and maybe help your husbands doctor understand the difference between the risks (of pregnancy) caused by IM therapy in women as opposed to the risks of therapy in men who wish to father a child.

I have been told by my doctor (as well as other expert CML clinicians) that there is no added risk to men as IM does not have an effect sperm.

Contact me on cmlsupportgroup@gmail.com and I will send you details of how to get a second opinion.

Sandy

Hi Jenni - so this is my personal experience, I am no Doctor of medical person

I was originally DX'd 7.5 years ago and put on Imatanib 400mg. We where told at that time the same as you that we shouldn't try for a child. We already had one, but where trying for a second. The advise was given along the lines of, "we don't know if there are any risks as there hasn't been enough medical studies to say one way or the other".

About 2 years later that advise changed, I think there had been enough accidents but with normal healthy babies for that to change.

So after a while my wife fell pregnant and we now have a normal healthy 4 year old boy.

We where extremely lucky as 6 months later I had to switch to Dasatanib as I had developed a mutation. And again the advice was and still is, don't conceive because we don't know the effects of the drugs. But to be honest 2 is more than enough for us.

My understanding is that the advice for women on Imatanib is still not to have babies but not 100% on that.

Rob

Hi both. Thanks so much for your advice, its great to hear positive outcomes! We have booked an appointment with our GP to discuss this all and raise our concerns, and with your help and experiences we will hopefully be able to start trying again!

All the best, Jenni

Hi. Thanks to your info we have booked an appointment with our GP to request a second opinion (although we're having to wait 6 weeks for an appointment!)

I have also compiled a load of research I have found on here and other websites regarding the advice on males on imatinib conceiving a child that I want to give to her so she can understand where we are coming from and why we want the second opinion.

Ive noticed a few people on this forum mention they had contacted Novartis who told them it was safe for males on glivec to conceive (or along those lines). I just wondered if anyone still had any of their information they would be happy to send to me?

Thank you. Wishing you all the best

Jenni

I would suggest you ask for a referral to a centre of excellence as all the evidence shows that you would be able to father a child. Maybe you are being treated at your local hospital and there knowledge of cml and TKI's maybe limited. Where are you being treated.

Were in Leicester which is a standard local Hospital. Don't get me wrong my husbands haematologist is fantastic. One of our biggest concerns after researching into this is we don't want to offend his doctor. We're certainly not questioning his condition or their work but just this 1 little (although not so little really) aspect to his treatment. Our GP is amazing too and really takes the time to talk to us both so we will voice those concerns about getting a second opinion to her and see what she says.

We did show some research we found to his haematologist a few months back just to check the advice. We made it clear if they said it was safe we wouldn't try to conceive until my husband was stable and hitting his goals with treatment but they insisted the advice was it was not at all safe. We do go back to the hospital in a months time, 2 weeks after our GP appointment so ill raise it again with all this new knowledge and see what they say but ultimately we will make our own decision. Although in our minds we already have made the decision to go ahead with our plans as its clear to us it's fine but we would still prefer to discuss it with a specialist to put our own minds at rest :-)

One of our biggest concerns after researching into this is we don't want to offend his doctor.

You're thinking about all the right things - but I really wouldn't be worried about offending your doctor. Your primary concern is for the health of your husband and your planned child. The feelings of your doctor come right at the back of the pack!!

You're right in saying we shouldn't think about that. I think just so much worry comes to our minds still that were being careful not to disrupt anything, but his treatments going well and were told to live our lives as normal so we should try and seize the day and not worry so much!

Clinical opinion always vary, but as your husbands haematologist is not expert in treating CML then I would question his/their teams approach to this subject. It is correct to say that TKI can have an effect on a foetus, but this is not through the sperm.

I have asked for the view of the manufacturers of imatinib and nilotinib and will share their answer when I have it. A second opinion will only add to your confidence. I hope your GP will be speedy in setting this up. Prof. Apperley is a world renowned CML clinician and I am sure would reassure you should you get to see her.

best of luck with it all.... an I agree with David, clinicians sensibilities/feelings should be the last thing you should think about, I am pretty sure they would agree.

Sandy

Thanks Sandy. I did try Novartis myself but they won't speak to me without my GP so if you do get anything if be interested to see it. I hope our GP manages to act quickly too but given were 3 weeks in to a 6 week wait for a general appointment I won't hold my breath!

Although I have found a number of presentations and publications by prof. Apperley and if Novartis shared her clear views along with all the other research we've found on here we feel we would be confident to go ahead without getting a referral. We will see!

Thanks for all your help.

Good news today too that my husbands finally been signed off by the ophthalmologist (he was diagnosed from multiple haemorrhages)!

How's your husband's sight now he's been signed off by the ophthalmologist?

I ask only because I presented with the same symptoms and it took the guts of a year for my sight to return 99% (I had these weird 'flashing' sensations in the centre of my vision).

There are still times where I can see some problems, but it's really rare. I was concerned at one point it was never going to get much better.

His sight is ok. All of the haemorrhages repaired leaving no lasting damage. I'd say the big thing is the anxiety it brought with his eyes. He has floaters (which most people do even me) and he now notices them more. A few months back we went to check his eyes 4 times in 1 week because of curtains, flashes all sorts but he was always told it was nothing. Of course though flashes and floaters can be caused by anxiety so I think that was part of it. He doesn't seem to have many issues now and they say his eyes all look normal too which is good. They can't see any white cells anymore.

I'm pleased to hear your vision also returned to normal. Makes you realise how inportant eye tests are!

Yeah, I have loads of floaters too. I try to count them, but as soon as you start to they move so it makes it impossible!! I reckon it's around the 15-20 mark. It's worst in the summer as they show up most against a blue sky, I find.

I've gotten totally used to the floaters, the only problem I have (and it is small) is when a floater from the left eye, and one from the right eye both pass over what I am focusing on at the same time. Totally throws my vision for a moment - but not a big deal.

There is an operation that can be done to remove them, but it sounds a bit extreme to me so I'll just live with them. It was the flashes that were difficult to cope with and they're 99.99% gone now.

David.

Hi David... I suffer from these too. You might find the following article interesting- I have not yet had time to read but it might have some useful info. Mine do improve when I consistently use an eye bath of 2 drops of homeopathic Euphrasia tincture with warm water. But I must admit it takes some dedication! They are still there if I concentrate but much less than recently.

Sandy

http://health.clevelandclinic.org/2013/09/your-eyes-understanding-flashe...

Hi all, I just wanted to say thanks again for all the information sent over. We finally saw our GP this morning, and shes writing a letter to Prof Apperley to request a referral. Fingers crossed this doesn't take too long!

She did also warn that sometimes the governing bodies refuse a referral out of the patients area (which is rubbish!) so fingers crossed that doesn't happen!

I'll be sure to post any information I get also which may be useful to others on here looking into how Imatinib effects males and trying to conceive :-)