Sex Life: Hello, my partner is on Ibrutinib... - CLL Support

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Sex Life

pollyg2016 profile image
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Hello, my partner is on Ibrutinib (also known as Imbruvica) - started one week ago. I have two questions.

1. Will the drug affect our sex life? Do we need to take extra precautions eg. Condoms?

2. He has been told to avoid grapefruit and oranges (he ate something that he didn't realise had oranges in it, and reacted immediately with shaking and numb hands for an hour). Are there any other foods he needs to avoid?

He has started to keep a diary on any reactions/what caused them/when it happened.

Many thanks,

Pauline

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pollyg2016
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

Yes condoms....Ibrutinib is not carcinogenic like most chemo, but they recommend them due to fluid transfer and increased risk of infection in both directions...

No..Bitter oranges, aka Seville... star fruit, pomegranates, St. John's Wort, Regular oranges should be fine.

All supplements must be OK'ed by your treating doctor...

Generally better to take pills on an empty stomach, food effects absorbtion..

~chris

Ruhi9 profile image
Ruhi9 in reply to Cllcanada

Hi Chris, I didn’t know pomegranate was on the list of forbidden foods.

I’ve been eating them whilst on my daily 420mg of ibrutinib, with no apparent adverse effects. They’re not mentioned on the drug information sheet which comes with the capsules - only grapefruit, seville oranges and St John’s Wort.

Please could you tell me your source for avoiding pomegranates, thanks.

Ruhi

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to Cllcanada

I'm surprised that tangelos are not on the list - a cross between a tangerine and a grapefruit or pomelo. I have often seen pomegranates included on the avoid list for some chemos, so I'm not surprised to see it on the list for Imbruvica.

Oleboyredw-uk profile image
Oleboyredw-uk

In addition to what Chris stated my list includes Pomelos and grapefruit. Most significant for me no Seville oranges means no Marmalade. I did not know about pomegranates, which is on Chris' list. Learn something new every day.

I normally have an an orange included in my breakfast, never suffered any identifiable reaction.

rob

pollyg2016 profile image
pollyg2016 in reply to Oleboyredw-uk

Thanks but what about sex life? Is it advised to use condoms? fluid exchange etc? We're past the stage of pregnancy so that's not an issue.

Berrytog profile image
Berrytog in reply to Oleboyredw-uk

I have had two very bad reactions to citric fruit eaten an hour before taking my pills. On each occasion I was rushed to hospital by ambulance. I now take nothing citric, it was tangerines in the second instance and naval orange in the first. My symptoms were extreme pain in the chest and stomach bloating so bad that I thought I was going to pop. The pain lasted twenty four hours. As far as sex is concerned I would avoid pregnancy by whatever means you choose. I started IB five and a half years ago but at seventy two I am well past my sell by date for sex.

pollyg2016 profile image
pollyg2016 in reply to Berrytog

Hi berrytog, You're ONLY seventy!!!! You're too old for sex when you're dead :-) , no sooner than that! Thanks for the feedback. No chance of pregnancy as partner has had the snip. I was more concerned with infections/toxicity in fluids etc.

closh profile image
closh

I wasn't advised to use condoms, just measures to avoid pregnancy as there's some evidence that Ibrutinib can cause birth problems. Not using condoms hasn't caused us any issues.

They're not sure if Ibrutinib is present in semen (I haven't heard of any of us on trials being asked for that test either) but the half life in blood is about 5 hours so you're probably extra safe if you schedule your partners pill times accordingly.

Graham

RJR1 profile image
RJR1

The only things I was told to avoid were Seville oranges and grapefruit. When I asked the Specialty Pharmacy about other types of oranges the answer was " better safe than sorry ... no oranges". The other fruits mentioned in earlier replies ...never mentioned.

saintjohn profile image
saintjohn

Makes me sort of happy I no longer have a sex life,wearing condoms would be like wearing socks to bed,can't feel the sheets lol

Hoffy profile image
Hoffy

I have been I imbruvica and sex has been fine. Improvement due to nodes shrinking and not pushing in the prostate.

Be well. Have fun !!

Lola69 profile image
Lola69

I am taking a tea that has peaches and pomegranate. Green tea and ginger as I have gained weight and eat too much. The tea helps curb my appetite.

YjbCLL profile image
YjbCLL

Hey...My son (now 11 months) was conceived (the old fashioned way) when I was about 14 months into Ibrutinib. He is fine and super cute. Let me know if you have any other questions...I know your post is a bit old.

Jeff

Pasca profile image
Pasca in reply to YjbCLL

Hi... What did the gynecologist say? Is the pregnancy more dangerous if the father is using Imbruvica? Did your partner had to do any more tests than for a normal pregnancy?

Is your son still fine?

in reply to Pasca

My oncologist was very clear that you should not conceive while on treatments. I’m on V+O which is for 1 year and they said I should only think about conceiving 1 year after my last dose of the drugs. Even then, they suggested freezing eggs as the safest option. I’m female, so didn’t ask any questions regarding males being on treatment but I believe a risk still exists? The drug manufacturers certainly advise against both males and females conceiving while taking the drug. The issue is that they don’t know what the impact is/could be. Because CLL is usually found in older people, the issue of fertility/having children comes up less and so there are minimal (if any?) studies into the impact of the drugs on fertility/unborn children.

Pasca profile image
Pasca in reply to

Hi, thank you so much for sharing and taking the time to answer me. Thank you.Unfortunately, it looks like my partner won't ever be able to stop Imbruvica from now on. We don't have children. And we want a child so badly...Doctors advise against it I know but ... I'm trying to find hope somewhere, somehow. I'm so desperate. :(

Newdawn profile image
NewdawnAdministrator in reply to Pasca

Hi Pasca,

Have you discussed this issue fully with a CLL specialist? Your husband would have to cease Ibrutinib for a while in certain situations and certainly if he needed important elective surgery. Many of us do. Please ask about a temporary cessation because it seems dreadful that this is preventing you from having a family whilst you are of child bearing years.

Best wishes,

Newdawn

Pasca profile image
Pasca in reply to Newdawn

Thank you so much for your response. I will check with a CLL specialist. It is dreadful... I so so hope we'll find a solution... Thank you. Best wishes and good luck to you ❤️

Justasheet1 profile image
Justasheet1 in reply to Pasca

Asking the doctor to stop the ibrutinib or even switch to a time limited therapy such as Venetoclax could be a possibility. Good luck,

Jeff

Pasca profile image
Pasca in reply to Justasheet1

Hi Jeff! Thank you so much for your response! I will ask if a switch in therapy is possible... I really hope it is. Thank you! Best wishes and the best of luck to you ❤️

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