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Dom

Transplant vs TKI plus baby!
Submitted by Dom on Wed, 13/08/2014 - 17:53.
A big thanks to Chris and Sandy for keeping me right. I know we all have a great deal to be thankful for, and I know that over time I will re-adjust to the new reality. It has been really positive reading through the various posts and it is great to see such positivity within the group. I take all your points on board re transplants and appreciate your time as I'm sure you' ll have answered this question many times! If I could ask one more thing it would be to find out about fathering on gleevic. My wife and I were in the process of trying for a baby when I received my diagnosis. My consultant arranged for the necessary things to be done at the fertility clinic and we are waiting for our first visit together. However I read a post that suggested some doubt had been cast over whether sperm is affected. Is there any up to date info on this issue that you can point me in the directions of.
Many thanks again
Dom

TKI therapy in males wishing to father a child.

Hi Dom, yes you are correct in saying there is doubt about TKi therapy affecting sperm. Certainly in males, there is little doubt amongst the CML clinicians I have spoken to about this, that this class of drugs does not affect sperm. So there is no reason for you not to go ahead with your plans to father a child.
I have asked my own doctor (expert CML with an interest in TKi and pregnancy) about this and she has advised that males taking TKIs are not at any great risk of causing foetal abnormality than the normal population. It is different for women as the risk to the foetus in the first trimester if taking TKI therapy is there. Even so there have been normal births to women who have discovered their pregnancy after starting TKi therapy, but it is not recommended to continue with therapy during pregnancy.

If you would like to be very sure about your risk (or lack of it) then you could ask your doctor (or GP) to refer you to see Prof. Apperley at Hammersmith Hospital. I am sure she would reassure you.
If you need the relevant contact details then let me know and I will forward them to you- cmlsupportgroup@gmail.com

Sandy

Sandy, really happy to read your post. Will definitely be taking this up with my consultant when I'm next in. My wife has just chimed in with your 'comments are good enough for her' !! A really big thank you for taking the time to reply
Dom

Hi Dom, my husband is on Glivec also and was diagnosed just as we started TTC. Following Sandys advice and others on here we have seeked a second opinion from prof apperley. We are awaiting to hear back at the moment but I'm happy to share the info we get when it arrives.

However I should also add the amount of info we have found already tells us its fine but we just wanted to be extra certain.

Good luck and best wishes

Jenni

I generally try to be very positive in my approach to what is possible with TKIs and CML, but I have thought about the fathering subject a great deal and have a fairly non-politically-correct issue with it.

If we choose to have a child on TKIs, then the person who has to live with the decision and consequences for their whole lives is the child, although secondarily the parent.

Whilst research has shown that healthy children are being born, we cannot know whether those children will have an impact from TKIs over their entire lifespan until, unfortunately, some of them have lived that long.

I'm very fortunate to have two children already from before my diagnosis, but I would find it difficult, with this uncertainty, to father another child knowing that I bring them into a future which may be impacted at any time by a very new drug. I make that decision form myself but I don't know if I could make it for a new child.

I would value other people's comments on this, and I have absolutely no wish to judge others for the decisions they may take, which are entirely up to them and I understand why they may wish to have children.

Rod

Hi Rod,
yes I understand what you are saying and agree that such a decision needs to be the responsibility of the people directly involved. Healthy children are being born, but there is an extra risk of foetal abnormalities in women who are treated with TKIs (data is from imatinib) when they conceive. The risk is in the first trimester (12 weeks), however is is thought to be safer to stop therapy for the duration of the pregnancy. Women who want to begin a pregnancy should not do so until they can safely stop TKi therapy for the period prior to conception as well as the duration of the pregnancy. Several women have done this successfully- but under the close care of their clinicians.

From what I have understood from reading the various publication available it seems that
for men it is a different issue- i.e. the issue is not an extra risk of foetal abnormality, but more the effect of therapy on fertility, and therefore, if possible, it would be better to bank sperm prior to the start of therapy as the effects on the viability of sperm may delay conception.

http://www.sciencedirect.com/science/article/pii/S0145212613002476

http://www.sciencedirect.com/science/article/pii/S152169260900070X

Sperm motility/viability- a fertility issue:

TKI effects on male fertility:
https://ash.confex.com/ash/2012/webprogram/Paper46216.html

I think you have been 'fortunate' as you say- you were able to father your children before diagnosis- but for those who have not been able to do so then there viewpoint might be a little different.

I think if I were in that position I would try to get the best possible advice and try to get a referral to a clinician who has an interest in this specific area. I certainly would not go ahead without clinical advice.

Hope the following link might help in this discussion:

Sandy

The following link is from the EBMT Learning Programme for CML. Click the link for Module 3: Managing TKI treatments and special CML populations- which is a good (up to date) slide presentation regarding issues with CML and its therapy:

https://www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Docum...

This PPT presentation includes a section regarding pregnancy and fertility issues for both women and men, diagnosed with CML within child bearing age group (approx 10%) treated with TKIs.

See start of the relevant section at:
slide 85: Fertility and Pregnancy
and
Slide 86.
' *CML gives rise to special issues during pregnancy since the condition requires life long therapy

*The situation differs for male and female patients'

For the current advice for Males fathering children when treated with TKIs scroll down to slides 99 - 101

Slide 101-
Male conclusions fertility and pregnancy studies:

*Due to possible adverse effects on male fertility sperm banking should be discussed at diagnosis as an option

*Studies show no suggestion of any problems in pregnancy, delivery or any increase in congenital abnormalities when the father is being treated for CML

*For male patients fathering children can be achieved without interruption of treatment

-------------------------------------------------

For all the EBMT modules on CML see this link:

https://www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Pages...

Hi Jenni, thanks for sharing this info. Sandy has been very reassuring with the research evidence she has provided. Of course we are all naturally very careful over this and want to speak to as many people as possible. Rather than bother Prof Apperley with a similar enquiry ( I'm sure she must get loads) we would be really grateful if you could let us know when she gets back to you. I'm speaking with my consultant at the start of sept. here in Edinburgh and want to have a conversation with him before doing anything. Thanks again to everyone who has responded to my post - all comments are gratefully received.
Dominic

Hi Dom,

My wife and I are considering family and have been through a similar journey. I was fortunate enough to talk directly to Prof Apperley at the 2013 CML patient day - she also held a sidebar fertility Q&A. Her opinion was that there is 'no evidence of TKIs impacting birth defects for males taking TKIs'; we know this is positive but not the same as 'evidence of no birth defects'.

However, Prof Apperley was very reassuring in the message to fathers on TKIs in that therapy does not need to be stopped. It's slightly trickier with the ladies due to time off TKI and time to conception and birth against disease progression.

It may give you reassurance to have your sperm quality checked - this should be available through your GP. I simply requested mine be checked for quality/quantity due to the 'chemo' drugs and I have my 'donation' appointment shortly. You can also pay for the appointment to be within 2 weeks (I'm a tight northerner so was happy for a 6 week wait).

Based on what I've read and the experts I've listened to, I'm satisfied that the risk is sufficiently low for us to try for a child without me stopping TKI therapy (pending sperm test results). Rod is indeed fortunate to not have to make this choice, but the current data suggests the chance of birth defect with father on TKI is no different to the rest of the population - I'll take the risk in pursuit of having a family.

Good luck with your journey.

Chris

Hi Chris
Thanks for taking the time to provide this info. Much appreciated. I see my consultant tomorrow and I know he's not going to offer any guarantees but everything I've read from people in this forum is very positive
Thanks again and good luck to you too
Dom

You bring about a valid point. I guess the flip side is that we are operating under unknown condition. Issues can and do arise ALL OF THE TIME when individuals are not on these medications. I mean people are developing diseases that at one time there needed to be some sort of genetic correlation. Even the development of CML is an anomaly since most people don't develop it via radiation exposure nor is there usually any genetic predisposition. Conceiving a child regardless of medications really is a game of Russian Roulette. You can be medication free, healthy as ever and have a sick child. I do find it interesting that the only warning that the drug company gives is directed towards women on the drug when it comes to conception/pregnancy/breastfeeding. There's no mention at all when it comes to men.