Sex/Fertility Questions relating to Chemo (Temozolomide)

FormerMember
FormerMember
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Hi, 

My (male) partner is currently undergoing chemotherapy (temozolomide) for a brain tumour.

We have been vaguely told that we must use barrier contraception to avoid a) risk to me from possible transmission of chemo into semen, and b) risk to a potential unborn child if I were to get pregnant.

No-one has yet been able to clarify what exactly these risks are, and how long they might last after he stops taking chemo. Some sources say the "risks" (whatever they might be) last 2 days, some 2 years.

So... In terms of health risks to me:

1) What (if any) are the risks to me, if I come into contact with potentially chemo (temozolomide)-tained semen?

2) How long might my partner's semen continue to convey this risk?

And in terms of risk to a child if I were to get pregnant:

1) What risk (of disease? of spontaneous abortion? or abnormalities? etc.) is sperm produced whilst/after taking chemo (temozolomide) thought to convey to any baby conceived?

2) Is this risk KNOWN to exist (i.e. documented cases, anecdotal evidence, clinical tests); or a hypothetical risk (i.e. no examples of harm, but as untested medics err on the side of caution)?

3) If there is a KNOW risk, what percentage increase does this risk entail compared to a normal pregnancy? 

4) For how long after finishing chemo would these risks last?

In case it makes any difference, I'm 30, and my partner is 33.

Any answers (especially with links to medical back-up), or pointers as to where we might find information, would be greatly appreciated!!!!

Thanks.

Susan

  • Hi, how are you doing? My husband was diagnosed with the same in 2019. He’s still on TMZ until April this year. 

    We are currently debating on when and if we are going to have another child. We always planned to have 2 or 3 but he was diagnosed when our daughter was 7 months old. 

    We did freeze sperm but it’s still not an easy decision and I think we’d always prefer to do it naturally if we could but like you say they advise you don’t whilst actively on chemo but there is very little info on the effects of Temodar on the baby.

    Anyway I hope you, your children and your husband are all doing well. 

  • FormerMember
    FormerMember in reply to Brian the BT

    Hi there,

    So glad that you reached out. I am currently 34 weeks pregnant, due 3/16. We did some genetic/ prenatal testing and consulted with a couple of genetic counselors and also geneticist about the potential risks of TMZ exposure.  It seems that the bottom line is that there is just so little research on the effects of TMZ on the baby, and all of the potential risks are theoretical.  The geneticist advised that we test for a specific condition called Beckwith-Wiedemann syndrome, which we were able to do via a CVS procedure at around 13 weeks.  Fortunately, everything with the baby is looking good:-)

    My husband completed his year of maintenance TMZ last month, and is now being monitored through routine MRIs.  This pregnancy/ planning for another baby has been so helpful in distracting us from fears associated w the diagnosis and our future.  Would love to chat more.. so comforting to be able to talk to someone else going through this.

  • FormerMember
    FormerMember in reply to FormerMember

    Just so I understand correctly, you and your husband conceived naturally while he was on TMZ? My husband and I are currently going through IUI treatments, but have limited sperm (samples he'd given prior to starting tx). I'm nervous we'll use all our samples and then won't be able to try for a baby for such a long period of time. He's only 3 treatments into his year of maintenance 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi! Yes, that is correct! We conceived naturally (unplanned) when he was 6 mos into his maintenance year of TMZ.  Gave birth to a healthy baby girl 3 weeks ago:) 

  • Congratulations that’s amazing news on your healthy baby girl! My husband stopped his chemo in April and we’d been very careful throughout treatment and just after but we had one slip up last month and I now think I’m pregnant! It’s been 3 months since he stopped chemo but I’m now worried we’ve not left it long enough although your story for sure helps make me feel better. Hope your husband is doing well x

  • what do you mean by maintenance year of Temozolamide? We attempted IVF/ICSI during my husband's chemotherapy, as his semen quality was high with intact DNA (95%). This was done at a fertility clinic in Germany, where we currently reside. Despite transferring three embryos, each of excellent quality (2 with a grade of 4AA and 1 with 5AB), we experienced chemical pregnancies each time. We are uncertain if the exposure to temozolomide during chemotherapy may have contributed to this outcome, as there were no identified female-related issues. It's worth noting that we did not pursue conception before his chemotherapy. Fortunately, he has fully recovered from cancer after undergoing two surgeries, and there has been no need for chemotherapy for the past five months. maybe this is right time to try again. 

  • what is the maintenance year of Temozolamide? We attempted IVF/ICSI during my husband's chemotherapy, as his semen quality was high with intact DNA (95%). This was done at a fertility clinic in Germany, where we currently reside. Despite transferring three embryos, each of excellent quality (2 with a grade of 4AA and 1 with 5AB), we experienced chemical pregnancies each time. We are uncertain if the exposure to temozolomide during chemotherapy may have contributed to this outcome, as there were no identified female-related issues. It's worth noting that we did not pursue conception before his chemotherapy. Fortunately, he has fully recovered from cancer after undergoing two surgeries, and there has been no need for chemotherapy for the past five months. maybe this is right time to try again.