Hello everyone, I read many concerns recently on this forum over conflicting advice given about protection during sexual intercourse whilst on Hyroxy. I had a routine phone consultation with my haematologist on Monday so I asked her. She said it isn’t something she or her colleagues advise patients to do certainly not for someone of non childbearing age. She sounded as though she’d never been asked it before. On that basis, my GP said the same last year, I am certainly not going to give it another thought, I am 71 though. I expect, like a lot of questions around ET, there will be different opinion on this but my consultant works in a well respective hospital with a brilliant haematology dept so I am going to trust what she says. I suppose if you are younger and concerned then you do need to find a definitive answer to this question.
Protection during sexual intercourse: Hello... - MPN Voice
Protection during sexual intercourse
My hematologist said it wasn't necessary.
Hi so you heard it isn’t necessary to wear protection
The issue has to do with the fact that HU passes into semen and vaginal secretions. A sexual partner can be exposed to the toxic effects of HU due to sexual contact. The use of a condom is advised by some, but not all doctors. Whether you need to use a condom during sexual activity is a matter of risk tolerance and personal preference. If you and your partner find the level of risk acceptable and prefer not to use a condom, then there is no reason to do so.
Here is one link to a source on this topic.
ethrombo.blogspot.com/2017/...
I had never even heard of this as a possibility! Will ask my Haemo and see what she says. Curses!
The only downside is that many hemo-docs are not up-to-date on this. Hopefully Dr. Harrison et al will shed more light on this topic,
I’ve had a different experience, my haematologists always ask ( I rarely see the same consultant now), I’m 41 and on hydroxy, always advise protection, I guess age is a factor.
The consultant I asked at UCLH the other week had not heard of the advice, recently added to a couple of the UK charities' info. booklets, either. He said he would ask , Dr Claire Harrison, (the fount of all knowledge), and get back to me - but has not done so yet.
Neither has Maz yet been able to advise as to why the advice suddenly appeared!
Someone made the decision to change the booklets - we should be told why and what the actual risk to our partners is ! Especially if most clinicians do not know!
Hi Runner999, we have included information the MacMillan give, we are also seeking further information from the medicines information team, Prof Harrison is doing this, I hope to be able to update you soon. Maz
Thanks Maz - it sounds as if everyone is asking her the same question !
I hope we get a reasoned response and not just " we decided to add it to the booklet" !
I do hope the Dr. Harrison can reference the study(ies) that were done that demonstrate HU passing into various bodily fluids. I did at one point see them, but cannot seem to find them now. I think it is likely that MacMillan and others simply are reviewing the literature and updating their advisements based on the current research. Kudos to them for staying current and giving the best advice possible.
Meanwhile, I did find this rather nice summary of the handling instructions for hydroxyurea. While it only indirectly addresses the issue of barrier contraception methods, it does a nice job of addressing proper handling of HU overall.
oralchemoedsheets.com/sheet...
All the best to all of you all.
So even that one only mentions contraception to avoid pregnancy ! In my mid 60 s ........
The very last line of the monograph addresses the issue indirectly.
"It is safe to hug and kiss. Special precautions may be needed for sexual activity while on oral chemotherapy, and you are encouraged to ask your care provider."
The authors elected not to be more direct than that. Providers are supposed to be aware of the risks related to sexual activity and inform their patients. I think this is not a black and white issue. It is a matter of degree of risk and what level of risk people are willing to accept. The level of risk is probably relatively low, but there is most certainly risk of secondary exposure during sexual activity to the partner of someone taking HU.
The key issue here is really about informed consent. Providers have an ethical responsibility to review all the relevant risks with patients when prescribing a medication, particularly one that has a significant level of toxicity. This definitely includes safe handling instructions, which all too often are not provided. When we decide to take a toxic medication because the benefits outweigh the harm, we also assume a responsibility to handle the medication properly. We can only do so if properly instructed on how to do so.
Providers have a responsibility to review all of the risks, including the relatively low risks associated with the use of a medication. It is not up to the provider to decide what matters. It is up to the patient. Likewise, it is up the patient to decide what is an acceptable risk. Unless patients are provided with all of the relevant information, they cannot make informed choices. This includes choices about how to protect our partners from potential secondary exposure to a toxin.
The bottom line from my perspective is that the level of risk of exposure during sexual activity is likely relatively low, but that is not the same as no risk. It is up to each couple to make an informed choice about how they want to handle the risk. They can only do so if properly informed.
I will note that is is quite helpful for us to be able to have a place to have these discussions in a reasonable and supportive fashion. Thanks to all for your considered input.
You keep talking about acceptable risk and choice - but no one has explained "of what" ! How can the risk to my husband be weighed up if we do not know what he is at risk of?
As I said on the previous thread, I suspect they may actually mean "do not have oral sex" but are too "polite" to say so!
Hydroxyurea is a highly toxic medication that some of us choose to take to treat the MPN when the benefits outweigh the risks/adverse effects. drugs.com/monograph/hydroxy... . HU is teratogenic, mutagenic, carcinogenic and leukemogenic. There are additional potential adverse effects as well. The risks of secondary exposure would include all the same risks we assume when we take the medication. That is why proper handling of HU is so important to protect others who are not talking the medication from exposure. The degree of risk would be in proportion to the degree of exposure.
More specifically, there are specific risks to direct contact of HU on the skin. "Hydroxyurea can irritate or damage your skin if the medication comes in contact with your skin. Wash your hands before and after handling the capsules or the bottle." healthline.com/health/hydro....
Since HU passes into both semen and vaginal secretions there is a certain degree of risk with exposure to these bodily fluids. Use of a condom of the most certain way to avoid exposure. Washing the fluids off post-coitus would also provide a degree of protection (the same as "wash your hands"). This would be easier when it is the female partner is taking the HU as a male could simply shower. You are correct in thinking that the recommendation for use of a condom during oral sex is particularly important due to the risk of ingestion. It would seem self-evident that the length and degree of exposure to tissues would impact the degree of risk. So would the form of exposure.
We know that HU passes into various bodily fluids. About 40% of the HU that someone takes is excreted unchanged in urine. online.epocrates.com/drugs/... . (see Pharmacology) . Perhaps Dr. Harrison and the medical advisors at MPN Voice can speak to exactly how much HU is excreted in other bodily fluids. This would perhaps help speak to the degree of risk involved in exposure to HU during sexual activity. The bottom line is that there is some degree of risk if exposed to HU during sexual activity.
From a layman's perspective, I would think the risk of exposure to HU during unprotected sexual activity is relatively low. That is not, however, the same as no risk. It is up to each couple to decide what level of risk is acceptable. There is no black and white answer to this question. We each have to decide based on the best information available. Hopefully Dr, Harrison and the MPN Voice medical advisors will be able to shed more light on this question.
Thank you to all for continuing to have a rational and reasoned conversation about a sensitive and important topic.
My hematologist didn’t think it was necessary.
Precautions are necessary if you are of child bearing age. X
That "advice" or rather command has always been there for those intending to have kids who must come off hydroxy a while before intended conception. It is in the medicine leaflets - and I assume drummed into anyone of child bearing age when put on this damned drug by their haemo and pharmacist.
But we are talking about new advice, suddenly appearing in the charity booklets, that everone on Hydroxy should use condoms as a safety precaution.
Oh dear thank you.
I started a long thread on this a few weeks ago. Linda probably started this new one with her medics' responses as that one got so long!
There still seems to be some unresolved issues here and even some anger, thanks to Hunter5582 for your comprehensive replies. I hope Prof Harrison can give us the the information we need, with evidence from studies, so that we can finally close this thread.
I also hope that Prof. Harrison et al can provide some more specific feedback and information. Particularly about how much HU is actually passed into other bodily fluids.
I would note that the anger we hear is, I expect, about the lack of informed consent that is all too common. I have experienced the same thing from some providers who simply do not meet their ethical responsibilities in this area. There are also providers who are not keeping up-to-date on some of these issues, which is also an issue of basic medical ethics. We can only make informed decisions when we are properly informed. Sadly, it is often up to patients to ensure this happens as some providers simply do not do provide the information needed for fully formed informed consent. .
Thank you
I work at a university and have access to everything in the Library, including several million online items from lots of journals and research sites.
I have spent some time searching everything I could think of (and I really hope the Librarians never check our search terms!) to see if I could locate any research on this and have so far come up empty-handed. I've also asked Macmillan for any links as I too would like to know where the advice has come from i.e. is it case-related or theoretical.
I will keep looking and report back if I find anything.
I sure hope someone can find the base research. I know I saw it at one point but now I can't find it either. DO let us know if you find anything.
I haven't been able to find any research but got an interesting - and comforting - response from Macmillan.
New thread started called "Sexual protection and chemotherapy - update".
Mel.
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