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Nilotinib and fathering children

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Hello,

I was hoping someone more knowledgeable could weigh in on this and help set my mind at rest.

To give you some context: I'm in my earlyish 30s and I was diagnosed late last year. Treatment's gone about as well as I could've hoped (0.0135% already:).

Anyway, I've probably been reading too much and it's likely a case of don't believe everything you see online, but I'm concerned about the impact nilotinib could have on fathering children.

I was advised by my consultant early on that there no such considerations with TKIs, and that would seem to chime with a few threads here.

However, some articles I've read online would seem to suggest otherwise.

At the foot of this oncolink article on nilotinib, for example, it says: "Exposure of an unborn child to this medication could cause birth defects, so you should not become pregnant or father a child while on this medication."

As another example, cancer.net says: "It is important to note that men and women taking TKIs should avoid fathering a child or becoming pregnant while taking the drugs because of a risk to the developing child."

A third article says there is no data on safety for men on second-generation TKIs, but adds that men are "not recommended to conceive while taking a TKI, with the possible exception of imatinib".

Meanwhile, this PDF on nilotinib, which was produced by the NHS, says: "It is very important the patient understands the potential risk of infertility, all patients should be offered fertility advice. There is a degree of uncertainty but most evidence supports that it is safe to continue nilotinib for male considering partenting. As nilotinib may cause reduced fertility, consider sperm storage/cryopreservation in appropriate patients."

As I understand it, evidence on the subject is relatively thin, but it's hard not to be somewhat alarmed by what I've read because it conflicts with my consultant's initial advice as well as the 2020 ELN recommendations.

Any guidance you could offer would be much appreciated.

Chris

 

There is an old thread on this general subject here My comments on that thread are still valid

1 On here David Fitz is the one with practical experience, but his 2 year old twins keep him pretty busy. David's daughters were conceived while he was on dasatinib.

2 The UK experts on this are Prof Jane Apperley's group at the Hammersmith Hospital.

I hope that's a useful start.

Thanks ever so much for your response.

Fingers crossed that David can also comment.

I suppose my concerns stem from the fact that I've been offered no real guidance on fertility.

Initially, I was told that it's nothing to be concerned about when I asked my haematologist and I took that on good faith.

I've not been offered the chance to preserve sperm, for example, and I would hate to look back on that as a missed opportunity someday.

Hi chris, 

I was recently diagnosed too started treatment last week, I'm 34. My hematologist told me no issues with fertility, good thing I didn't listen to him. Sperm collecting and freezing (for five years ) is free where I live for cancer patients. The only mistake I made, not seeing a fertility doctor to make sure I didn't shoot blanks hahaha. I was rushing to start treatment. 

I would advise if you can afford it to do that go see a fertility doctor and freeze your sperm if possible, you've been a year on treatment  and your sperm now will probably be better than your sperm in five years. But I wouldn't worry too much, your response is great and you probably can clear the medication from your system with discontinuation for a few months  and conceive like many cml mothers do. I did it primarily in case I couldn't get off medication and my sickness god forbid progressed. 

What I know now is that our oncologist are primarily concerned with keeping us alive, so for life advice I'd turn to a site like this. Go see a fertility doctor that would be my first move if I were you. But don't worry long term you are most likely fine the counter indication is for the foetus not you freezing was just for my piece of mind .

Good luck!

Hello,

Much has changed in the world of fertility and CML (for men, anyway) since I was diagnosed 8 years ago. Back then, fathering a child successfully was not backed up with much data. So before I took my first dose, I was sent off with a well worn “fancy” magazine, into the most depressing room in the whole hospital, with and a little cup and my sperm was frozen after that. I’ve never had to use it.

Right away, kids weren’t on the agenda - but over time that changed. I’ve met Jane Apperley a number of times, and listened to her talks over time. Not too long after I was diagnosed, the message was that fathering on imatinib is safe, but there was not much data on other TKIs so don’t do it. A couple of years later, we started to talk about kids so the next time I saw Jane was in Slovenia at a CML conference and I asked her what I should do ... I have sperm frozen, and I have the other obvious option too. There are risks in everything, but what should I do? She said that the emerging evidence, which she agreed with anecdotally, was that other TKIs (dasatinib in my case) were OK for fathering a child. She said “go for it, the old fashioned way” and we did and we ended up with twins ... which is not because of dasatinib.

Since then, the evidence has moved on again and it really does seem that there’s no problem fathering a child on TKIs. It’s much more complex for a woman, but in the case of us guys I’d echo Jane’s advice and say just “go for it”. Whether you get blessed with twins or not is another question!

My little two turn 2 towards the end of this month. Time flies!

David.

Thank you ever so much for allaying my fears. That was more or less my understanding before hand, but it was quite scary/confusing to stumble across something in black and white stating the opposite.

Chris, there are people on this forum who have contact with international experts on aspects of what is a rare cancer. I probably wouldn't have tried treatment free remission if I hadn't had the chance at the CMLSG patient day 2 years ago to talk to Prof Richard Clark who was the lead researcher on the Destiny Trial. David had the chance to discuss his fertility question with Jane Apperley, who is a global expert on the subject. In the USA Scuba sees Dr Cortes at MD Anderson, who is one the top guys on CML over there. There are many other examples.

The information that these experts develop and share takes time to filter through the medical hierarchy and be included in treatment guidelines, particularly to general haematology consultants who do not deal with many cases of CML. Doctors are bound by guidelines and their professional indemnity obligations to be conservative in their advice. The general haematologist has many conditions to keep up to date on: we sometimes need to help them with the latest on our condition.

I have a running gag with my current consultant (who did some of his training with Prof Clark) that if I am seen by his registrar I will invoice him for training them on CML.     

Well said, Alastair!

That is a pertinent point. I've perhaps been a little lax and guilty of sitting on the sidelines somewhat. I'd never been through such a health scare before and I'm a passive person, so I'm not great at asking for what I want, especially as it was hard to have any idea at first. I also don't want to step on clinicians' toes.

However, you are right that it's important for the patient to take a lead at least sometimes. I'm a veracious reader, so I've been devouring everything about CML that I can get my hands on. I'm now asking myself: what's the point, if not to inform my care?

I'm a little concerned, as an example, about the lack of any cardiac monitoring given the potentially serious side effects of nilotinib and the fact that Novartis' leaflets says I should be having ECGs. I will raise that and fertility at my next consultation!

Just to add in my two cents: 10 years on Nilotinib, 2 healthy daughters ages ~4 and 30 months. I was 38 and 40 at the time of their birth and No break in treatment.

Had to do IVF (wife not me) for daughter #1 and the doc commented on the high quality of my sperm.

In summary, my experience has been fine and, having also had a direct conversation with Prof Apperley prior to starting a family, I was very reassured on the evidence (or lack of).

Good luck

Chris

Just to add in my two cents: 10 years on Nilotinib, 2 healthy daughters ages ~4 and 30 months. I was 38 and 40 at the time of their birth and No break in treatment.

Had to do IVF (wife not me) for daughter #1 and the doc commented on the high quality of my sperm.

In summary, my experience has been fine and, having also had a direct conversation with Prof Apperley prior to starting a family, I was very reassured on the evidence (or lack of).

Good luck

Chris

Thanks all. It's quite frightening to read on CRUK's website that "you may not be able to become pregnant or father a child after treatment with this drug". However, it is heartening to hear so many success stories. Anyway, I'll be sure to raise it at my next consultation.