Having a baby while on Crizotinib - 1268847

Thank you for your reply Tom! Having been on complete remission for nearly three years made us think that life has to continue. Cancer came as a huge shock three years ago, I had met my partner three months before and before we called ourselves "a couple" we were already fighting such a big battle that actually made us a lot closer. The first few months have been an emotional roller-coaster, and our love blossomed between the oncology clinics and wards of the hospital.
Once the first line treatment was completed, my partner had to face what all patients who are as lucky as him to go on remission have to face. The rebuilding of your life, of your routine, of everything. And he had to do this in a foreign country for us (we are both Italian, I moved to the UK 8.5 years ago and he moved 3.5 years ago a few months before getting ill. He decided to be treated in the UK as he was too unwell to travel back).
We have been very close and strong together, he started to work, improved his knowledge of English, he studied, obtained a good job within the field of, guess what, medical research. We bought a house together and now we feel we would like to start a family. It sounds like we are a very normal couple, the difference though is that he has to travel to Italy every six weeks for his health check ups (the Crizotinib clinical trial was not available in the UK, the only option was to be followed in Italy). I am hopeful we will be able to have a beautiful and healthy baby in the near future whether that comes naturally or through other methods. I hope somebody will be able to advise us. Certainly, the fear that one day the illness may come back is there despite we keep it hidden in the back of our minds and we try to only focus on the fact that as things stand my partner feels good and healthy. We feel blessed by the great chances that we had and by our special love that I hope will keep us together for many years to come.
Wishing you all the best!
Giulia

Hello,
I am new to this forum and pleased to meet you all. My partner, a 27-year old man is being treated with Crizotinib since September 2012. He was diagnosed with Non-Hodgkin Anaplastic T cells Lymphoma ALK+. After chemo we decided to continue his treatment with Crizotinib (on a clinical trial) rather than following the standard path of autologous stem cell transplant. He has never suspended the treatment apart from short periods (10 days) when his blood test showed he needed to (low white cells). He has been on complete remission since (he actually had a negative CT scan also before starting but his PCR/NPM-ALK from peripheral blood was positive suggesting the illness was still present in the blood ana high chance of relapse).
Being a fairly young couple we have been wondering about fertility and the possibility of having a baby. Before starting chemo he had cryoconservation. Nevertheless, his Professor said that we could try to conceive naturally since the worry would come when the woman takes the drug not the man. After a few months not taking any contraception, I found out I was pregnant last week (05/03/2015). I repeated the home test on the Saturday (07/03/2015) and again positive. We were over the moon. Sadly, I had a very early miscarriage on Monday 09/03/2015 which was confirmed at the A&E. I am worried that the Crizotinib may in fact affect the quality of his sperm but there are no data based on studies on men, just some preliminary studies on rats (http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Inf… paragraph 4.6 and 5.3).
I am wondering whether anyone has been successful in conceiving a healthy baby while taking Crizotinib. There is no planned suspension in the clinical trial. Any doctors or patients out there with any experience/knowledge?
Many thanks for your help in finding some more information.
All the best to anyone and long-lasting remission to all the cancer patients!
Love
Giulia

Thank you catdander for your messages and for merging the two topics, I was a bit naive so posted in two places! I am glad your husband is having to experience the "go-back-to-life" effect. This is just so good even though difficult in the beginning and not free from fears etc. as we very well know. Cancer changes your life no matter what, but I feel like saying that, in my partner's and my personal experience, there are also good things that we have learnt and acquired throughout the path and one of this is my sweet partner. I don't know how things would have evolved between us if the lymphoma wasn't diagnosed. This may sound strange, but it brought us so close that I don't think anything can separate us now.
Anyway, I will be very looking forward to hearing from Dr Walko and I also thank Dr West for his reply. My hope is to find some personal experience of a patient or a doctor who treated a patient who eventually conceived. In the meanwhile, my partner's doctor replied to an e-mail we had sent to confirm that no studies on humans exist (the number of patients is very limited and the majority is over the "conceiving" age). He also said that from the documentation they have about studies on rats it seems that the drug is not genotoxic nor teratogenic at the dose given to humans. However, they cannot guarantee that the fetus will grow healthy and "normal" so it is a very personal choice whether we decide to try to conceive naturally or through IVF. Given his reply we think we will still try naturally for a while and see what happens. However, I will wait for other views, if any and to hear from Dr Walko.
All the best for you all.
Giulia

In regards to the testosterone, we have noticed a lower libido in my partner compared to before Crizotinib, but this does vary and despite there are periods when he is not thinking about sexual intercourse at all, there are other times that the libido seems higher. I don't know if this will get worse in the future, possibly it will so I am asking if it is advisable to get injections of testosterone or other forms of testosterone? Also, Dr West, when you say "many trials formally state that people on anti-cancer therapies need to use contraception if they have childbearing capability" do you mean that this is a formality and it may not be the case that children (if conceived) will have abnormalities? Is it stated because there are no data and so it is a precaution? I am so hopeful this miscarriage was just a matter of being unlucky and that we will soon celebrate the arrival of our baby. Thank you again for your kind replies. I already love this forum which is giving me the possibility to ask information and speak to other people with different but somehow close experiences to ours.

Thank you amd5, I have read all that info already but that comes from the same doc about the non-clinical studies on rats and it says that there are no studies on men. This is why I am trying to find any patient or doctor with some experience in this (if there is anyone at all). It feels like we are the first in the whole world!

Thanks Judy and Tom for your interventions which are very much appreciated. Unfortunately, the clinical trial Aldo (my partner) is on does not forsee any suspension any time soon. However, I am hopeful that as his specialist said, the dosage given to humans as opposed to animals is not genotoxic and we have just been unlucky this time. In the UK there is no clinical trial with Crizotinib and very little is known about the drug (sadly, it wasn't approved by the NHS to treat/control lung cancer and there is no study on the benefits it may have on patients with lymphoma such as Aldo). Aldo has been off chemo for nearly three years and as far as his general practitioner in the UK is concerned, we would be treated as any normal couple and we can only have a free consultation with a fertility specialist and a genetist after 2 years of failure in conceiving. My hope is that because Crizotinib isn't as toxic as chemo, his fertility may not be compromised. Nevertheless, I do not want to put my future baby's life at risk and I asked the Italian specialist (the one following Aldo's case) if we can perhaps see a fertility specialist in Italy where Aldo is currently followed for his Crizotinib/Xalkori treatment. I hope this will be feasible.
All the best to you all.
Giulia

I also decided to write on here because of the luck of data and information around this topic. I hope that if anyone will be in our same situation in the future, they can then find some more information on the internet. It may not be scientific data but they can get confronted with somebody who has been there...

Good morning!
Just bumping this up in case Dr Walko is available. Many thanks to everyone who has replied so far.
Giulia

Dear Dr Walko,
Thank you for your reply. I'm unsure of what is meant by "they have off target effects". Do you reckon that it could be difficult that a healthy foetus could form? Could you advise any test we can do our should we just avoid conceiving a baby? The clinical trial my partner is on does not forsee any suspension. He has been on crizotinib for two and a half years. could this be potentially dangerous for his health too?
Many thanks for your advice.
Giulia