Yesterday Maz threw a curveball into a discussion saying that the new MPN Voice leaflet (and I see McMillan Cancer Care) now command :
If you are sexually active during this course of treatment, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.
This is not mentioned in the medicine leaflet nor the NICE website.
Can anyone shed any light on where this has come from?
Does it really mean "No oral sex" ?
I understood it to mean the fertility side of things, a risk of some problems with the embryo.
Yes it is in the medicine information leaflet, I posted about it a long time ago
Not in mine! I read every line yesterday!
And why putting the info. now? It definately was not there before.
And I cannot see how a trace of something we take orally into our systems at, mainly 500mg or 1000mg daily, can then really affect someone else if "applied externally" , as it were, in vaginal fluids. Especially if one washes very soon afterwards, (as, being morning people, we nearly always do!).
"a trace of something" may be all that it takes. (after all, that is all it takes for a pregnancy or covid or any other viral infection) Washing soon afterwards is not the answer to avoid the possible issues.
Surely there isn't a problem using a condom to keep you/yr partner safe?
Oral sex would also carry the risk.
That is why I was asking why this info is suddenly being circulated now when not in my leaflets, medicine insert, never mentioned by consultant nor hospital pharmacist.
"may be all it takes" - for what, why, how ?
What is a miniscule amount occasionally transferred from vaginal fluids to the exterior of a penis going to do ?
Does it make a difference if you have sex daily, weekly, monthly ?
And yes, as I said, is it really a "polite" way of saying do not ingest via oral sex ? !
My husband and I are many years past the dating days of condoms, which we were never very good with - and what, with the Viagra ........ - no we would not be "happy" using them ! Sorry if that is too much info for this time in the morning !
Clinical information can be yr guidance.Entirely up to you and your partner whether you want to follow it or not.
But there has been no "clinical guidance" - just the statement suddenly being added to the charity's websites/leaflets.
I just want to know what the risk from half a teaspoon of vaginal fluid being introduced to a penis actually is ! Risk of what ? It is hardly likely to reach his bone marrow to affect bloods.... And concentration would be very, very low - so what could it do?
Is no kissing allowed?
I'm not a clinical specialist. Seek advice from a health care professional,not Internet forums on something as potentially risky as this.
Thanks. I have been searching for medical advice in the internet and found nothing.I shall be ringing the hospital pharmacy early next week - and have a hospital phone consult a week or two after that. I do not consider it that urgent.
But I was asking here because it is the MPN Voice booklet which has suddenly been updated and so I assumed Maz or someone would know why!
Maz is an an MPN patient like us so she can't be expected to give clinical advice. What she does do (extremely well) is direct us to the best information available.
- but there must be a reason for the information to have been updated ! I would like to know the reason.
Hi Runner999, sorry for the delay in getting back to you, I have been checking with the team and they have advised that: the update included information that MacMillan give, and we are also seeking further information from the medicines information.
Maz
I understood that was always the case, I have seen it in other advise leaflets. I have seen some advise that says particular care in first few weeks of starting treatment & when dosage increases. It's because its in the whole body and is a toxic substance and can be secreted in bodily fluid, that also means sweat, tears etc... Best person to talk to is consultant but we went with keeping me safe rather than run the risk of causing me long term issues.
Good Morning !!! This is the most degrading and ridiculous thing I've ever set my ears to 
In my opinion and to my knowledge the only thing which can harm attenders in a cancer treatment is the radiation.
If it was true, it ought also be forbidden to use toilet, either for this or for that purpose, a woman's menstrual pads ought also to be treated like atomar waste !! Hey-- where are we heading ?????? Maybe they believe that a man's penis is eating his partner from inside, his tongue too --lol
Maybe we soon'ish shall be carrying signs, like the Jews had to and be living in radiation isolated ghettos, only let out to get treatments !!
Think about what the hospitals are letting out into our gutters ?? Iven if lots of their wastes are taken to special centers for treatment, the wastes will have to end in our soil in not thi, then in that way !
Have a nice weekend -- and don't forget to spend it in chastity, ahem... !!!
I was not suggesting that chemo drugs such as hydroxycarbamide are not dangerous drugs. Although obviously they are totally different to radiation chemo.
And yes, we follow rules in handling them and keeping them away from other people.
But I understood that was to stop accidental ingestion.
(Well done on the correct use of the term "chastity" BTW - seldom used nowadays !)
Words deserves airing, like old dogs.I just dislike everything illogical. If there were such dangers connected to our treatments the remedies would have to be treated like our farmers' chemicals.
I let some of your comment lose on my cancer unit group, and they all had different degrees of titter itch !!!!
I am glad ut was not tears, we cry enough.
I just assumed it was in the likelihood that there is a child conceived
Hi there. I think we need some clarification here!
Hydroxycarbamide is indeed highly toxic but I also understood that the doses given for chronic conditions like MPN are relatively low and therefore the side effects / risks may be different.
Like others I also thought the risks were around fertility. Perhaps Prof Harrison could give some definitive guidance.
And, another thought, does that mean that people taking Hydroxycarbamide should not kiss their partners apart from possibly a peck on the cheek ? ? ? ? ? Saliva is another bodily fluid ........
I am glad Mazcd passed the information about condom use along. It is the type of information that providers should be providing to patients when prescribing any medication, particularly one that is toxic. Informed consent means being informed of all of the risks, including those that are relatively low. That is the only way people can make informed decisions about their care. It is also essential for patients to be able to manage their use of a toxic medication responsibly.
It is unfortunate that the patient education leaflets are inconsistent regarding what they share. That is why it is a good idea to read more than one version and to consult the advice given to prescribers as well. Note that the information for prescribers is much more extensive than that given to patients. Decisions are made about what to actually tell patients based on the perception of what patients should be told, which is not everything.
The reasons for the cautions regarding condom use is based on research indicating that hydroxyurea passes into both semen and vaginal secretions. I am not aware of any research that has looked at tears and sweat, so there is not data to indicate a caution for that. We could reasonably suppose there is a different level of exposure/risk to the partner of a female or male simply based on what happens to the semen/vaginal secretion after coitus. That would just be conjecture, however.
There is no question that hydroxyurea is a "highly toxic drug with a low therapeutic index." That is well established in the literature. It is also well established that hydroxyurea is a teratogen, carcinogen, and mutagen. It has also become clear that there is likely some increased risk of leukemic progression with long-term use (more than 10 years). When we make the decision that the benefits of the hydroxyurea outweigh the risks for treating the MPN this is a decision about what we are doing to our own bodies. Due to the toxicity of the medication we have a responsibility to handle the medication properly to mitigate risk to others in our household.
Proper handling can be a simple as washing your hands before and after handling the hydroxyurea. Note - that is a good idea with any medication. I was trained to do that when administering medications as a professional and we trained all patients to always do that. When someone not taking hydroxyurea is handling the medication or the container it is in, they are advised to wear gloves to reduce risk of exposure. The issue is how much risk is acceptable when dealing with the potential toxicities. Most would say to the degree possible it is always better to eliminate risk.
Regarding risk to our intimate partners, each couple has a decision to make. There is some level of risk of secondary exposure to HU inherent in sexual activity. Whether that level of risk is acceptable is a decision each couple has to make. It needs to be an informed decision based on the facts available to us. How much risk is acceptable is a decision that each of us has to make. There is no single right answer. Only you and your partner can make that decision.
Thanks for both the original question and Mazcd's answer. While this is a sensitive topic it is exactly what this forum is for. We need a place to share this kind of information and discuss how it makes us feel - without any judgement.
All the best to everyone.
Thank you for your detailed reply. In between times I had found an old reply of yours on the same subject by searching and scrolling down quite a way on the word "condom" !
However I still have no answer to the question as to what the risks actually are from, say, weekly exposure of the penis to vaginal fluids which I would have thought must be very dilute.
Should they really have said "we do not recommend oral sex" ?
Should we not kiss passionately because of saliva?
This info was not in my MPN Voice MPN booklet or Hydroxycarbamide leaflet 2 years ago - so why added now?
These are my questions !
Planti added some additional science-based answers to the discussion. Unfortunately I cannot find any research that quantifies the amount of hydroxyurea that passes into specific body fluids. It does indeed pass into multiple body fluids, which simply makes sense based on basic physiology. I did just come across this very specific leaflet on this topic while looking for additional information. ethrombo.blogspot.com/2017/...
Some patient education leaflets that address the need for condoms do say kissing is safe. This general set of chemotherapy recommendations recommends against open mouth kissing while on chemotherapy, but it is not specific to hydroxyurea. I expect this may be more relevant to more intense forms of chemotherapy.
oncolink.org/support/sexual...
The one warning I did come across advises to avoid oral sex if you have active mucositis (mouth sores) which simply makes sense. There is an advisement to use a condom during oral sex as well from at least one source. Exposure to blood during sexual activity would be another reasonable concern, particularly with HU in someone's bloodstream. There are also warning for caregivers to be careful about exposure to urine and feces when caring for patients on HU. Again that just makes sense as HU is excreted 40% unchanged in urine.
I am afraid there is not really a quantitative answer to your question about level of risk. It depends on too many factors. The dose of HU would certainly be one of them (see Planti's answer). You certainly could reasonably stratify risk based on the type of activity, length of exposure, type of exposure, and the gender (anatomy) of the persons involved.
The core of the answer to your question is that there is some degree of risk of exposure to HU during sexual activity. No one can say precisely how much. Even assuming the level of exposure is relatively low, how much risk is acceptable? There is not a clear answer to that questions. It depends on the people involved and their risk tolerance.
As to "why now", I expect that more sources have started adding this advisement to patient education out of an abundance of caution. Once one source does it - others follow. I know that advisement goes back at least several years, possible longer. These things do evolve over time, hopefully in the direction of better informing patients. That is really the underlying issue you are addressing. It is up to prescribers to do their due diligence in providing patients the opportunity for meaningful informed consent. That can only occur when people are fully informed about all of the risks as well as the intended benefits of any course of treatment. Prescribers also have a core obligation to educate patients about the proper handling of any medication with a toxicity profile like hydroxyurea. Educating patients about their treatment is a medical best practice and a core ethical obligation for any prescriber.
Thank you to all for a reasoned conversation about a sensitive topic.
Thanks for the links.
As always your reply is well thought out and clear. Each couple needs to assess what they can find about risks for themselves. As Hydroxyurea is such an old drug I have noticed that there is pretty scant new information being compiled into new well organized and practical suggestions for patients. Salivary and sweat glands are very similar in form and function to the kidney units of excretion (glomerula) and as such we can expect that some of the unmetabolized drug will appear in the sweat and saliva as well as seminal and vaginal secretions. Exactly how much is very unstudied as far as my researches tell me.
This is for the potential audience:
Generally speaking, exposure risk of things that are toxic can be thought of as: toxicity of one thing, plus other toxic things and multiply by the length of time you are exposed in addition to taking into account how bad or good your organs are at getting rid of toxins. This is sort of simplistic as you can add in all sorts of variables.
Of course the route of exposure is also important, as for instance the penis covered with a tougher epidermis is much less penetrable to fluids after sex than the vagina. The exposure time is a factor too as a simple shower does it for one not the other.
So for instance if you both are older, and your partner (who is not taking the medication) has basically okay health and not expecting to live for another 50 years, one might be less cautious about sharing bodily fluids with their consent. Subtracting one or more variables might lead to healthy discussion as to how important it is not to use barriers methods during intimate acts.
It is also of concern what we put into the waste water, which holds true for so many things from toilet bowl cleaner to chemotherapeutics (antibiotics also being one of those). You can go online and see how concerned some septic tank providers are about servicing tanks where those making deposits (!) are on chemotherapy. From failure of the septic bacteria to live and perform to potential toxic exposure to staff. And yes I am sure that they wear gloves and wash their hands before they pick up their kids.
Finally my concern is for the animals that give us so much love and solace. Wash your hands for them after handling anything toxic, don't use a lot of chemicals in your house for everyone's sake.
Sanity in crazy times, must prevail, Lauren
My guess is that they don't know what the risks actually are and it would be incredibly difficult to assess them. I was looking for more information about side effects of Peg and found myself delving deep into stuff Roche had put up on the web, I came away realising that they're still collecting information on the drug.
Certainly pharmacists know more about drugs than doctors.
Maybe they're covering themselves by saying no contaminated fluids into another person.
On hydroxy my pee smelt weird, seemed strange to flush it away eventually to the sea.
I have now also read 3 patient inserts on line , FDA info (as well as NICE), eMC info and Cancer Research UK - nothing - only MPN Voice and McMillan !
Perhaps it is the condom manufacturers ! (- not a conspiracy theory - honest !)
To quote from the patient information with my last batch (Bristol-Myers Squibb version):
"When appropriate both male and female patients should discuss safe contraception measure before and during treatment with Hydrea"
And yes, it does say 'measure' rather than 'measures'.
Not exactly instructive is it?
Andy
- but again, contraception advice is not the same as "use a condom to stop transfer of vaginal fluid/semen" when there is no contraceptive reason for us oldies or women using the Pill or coil.
Hi. I asked my oncologist when I got on HU about regular unprotected & oral sex and was informed it wasn’t safe for my husband. Hoping he was wrong I asked a specialist a few years later but he said the same thing. If you go onto the product literature for HU in the states. it’s listed as a black box toxin-as bad as they come. And they are in fact so toxic that if there’s vomit or any feces from the patient, rubber gloves should be used. But that’s not surprising since we’re never supposed to touch the med without gloves on. The product handouts make it clear this is really toxic. That’s what scared me in the first place. If you want to get really bummed, any kissing with tongues is also risky. Katie
I’m a 71 year old female that’s been taking hydroxycabamide for 6 years. The issue of unprotected sex has concerned me for a while. I did ask my GP about it last year and she said she didn’t think there was a problem as I was taking the drug, it would most probably be a different matter if it was my husband. I’ve been very interested in reading what everyone has said in this post but it’s still unclear to me what exactly will happen to my husband if we continue having unprotected sex. What side effects is he going to get, if any, will he become ill possibly? He is 74 so this isn’t going to be a long term issue but it seems, for younger people particularly, there needs to be some very sound advice on this. I’m going to talk to my haematologist about it but I suspect that the answer will be unclear and that I will be told that it’s down to us to make the decision, the patient and the partner. Like a lot of things to do with this rare disease I wonder if even the experts really know the answer.
I asked my haemo about in the last phone consultation. She didn't know anything about it and insisted that hu doesn't reach vaginal fluids. The Macmillan info sheets she sent me were missing the last pages , which is where this appears. I only saw it when I read the sheets online. Doesn't fill me with confidence.
Thanks for posting, Runner999, and for everyone who replied.
I am new to this forum, recently diagnosed with ET, early 70's, and having only mild symptoms. I am questioning whether I need anything beyond aspirin and was seeking information regarding Pegasys, as recommended by my hematologist, and HU.
This discussion has been enlightening and makes me think I should avoid cytoreductive medications until my symptoms increase.
Adding my two cents: Different companies may have the same toxicity data, but likely have different attorneys...
Good health to you all!
The prescribing of cyto reductive treatments for older people is not, on the whole, to do with symptoms - but to reduce platelets in the blood, thereby reducing the likliehood of a thrombotic event including strokes which we are more likey to suffer from as we get older. I have no symptoms but went on hydroxy at diagnosis aged 63 because of age, family history of heart problems and pre- existing peripheral arterial disease.
In the UK hydroxy seems to be the first stop for anyone over 60 with ET. I assume you are in the USA as you mention "attorneys" ? !
Yes, we all have our little ways of showing our stripes. 
Thanks for your experienced perspective, Runner. I'm just being a bit cautious about any action that might lower my QoL which is really quite good. Clearly, a significant thrombosis could change that rather dramatically. I had a TIA a year ago despite platelets only around 450 (still there now). I am also positive for JAK2-V617F which is known to increase thrombosis risk. I see that a low-dose aspirin twice per day has shown strong effects in reducing clots versus once per day. What I don't know is whether adding cytoreduction will provide significant additional help. For example, if my yearly risk is 20% and aspirin reduces that to 10%, and aspirin twice per day gets me to 5%. That doesn't seem too bad.
I am fortunate to have a very experienced hematologist/oncologist, so we will agree on a good plan over the next couple weeks.
Yes, I need 1000mg/day hydroxy to get my platelets below 500 even though they were not normally much over 700 with one rogue reading at 835. Keep hoping can halve this treatment soon!
macmillan.org.uk/cancer-inf...
There is information in the Macmillan leaflet online but nothing in the Hydroxycarbamide leaflet online.
The Macmillan leaflet has more information. (I didn’t know women shouldn’t wear false nails? I don’t anyway)
Yes - I mentioned McMillan as well as MPN Voice in original post - but the query is - why have they suddenly added this advice and what are the actual risks to our husbands or wives?
Me too on the false nails thing ! A bit of ordinary nail polish on special occasions!
I’ve got the hospital in a couple of weeks, I will ask.
I asked the consultant who rang me yesterday, he seemed unaware (other than the contraceptive side of things) - He said that he will ask Dr Claire Harrison ( the fount of all knowledge !) and come back to me!
- other news - platelets up to 500 and up to 3 tablets at weekends
😪
It’s common sense. I don’t think anyone would want to expose a sexual partner to a chemotherapeutic agent. HU is excreted through the kidneys. I make sure all toilet lids are down to prevent my cats being injured if they found the toilet water appealing. Chemotherapy CAN be present in any secretions or body fluids you can think of. It is by unlikely you will find this information in a pamphlet. It would require a study to determine. That would be complicated by the individual’s ability to metabolize the drug. It is scary complicated. I would be honest with your sexual partners. The documents submitted for approval of a drug might have more information. It’s so toxic you are advised to wash carefully after handling the capsules and never to open them. So.......Ask your HemOnc what he or she thinks.
As I have asked - what is the risk of short term exposure to very dilute vaginal fluid (or sperm).? What could it actually do to my husband before he washes his bits 30 minutes later? ! No one seems to know.
It is not as if he is dealing with my drugs or bodily fluids every day as a nurse might have to for several people in a hospital where exposure could build up.
If it is that poisonous in extremely tiny amounts then why are we put on it for life?
Obviously I am careful around the drug and house - though we have no children or pets around.
I don’t think any risk to your partner unless she is a woman conceiving a child.
The amount of chemical in bodily fluid will be so minuscule it will not hurt your partner.
Condom is to protect even one molecule of drug (or a chemo-toxified sperm) from reaching a fertile egg and disrupting cell divisions at conception.
It’s a bit late now!
The use of condom is only concerned with potential conception. Trace amounts of a chemo drug reaching sperm or eggs could affect cell division or cycling at conception.
I just used condom because my wife is six weeks pregnant and we don’t want even slightest trace of hydroxyurea reaching the embryo/fetus this early from seminal fluid, although risk actually might only have been at time of conception.
I think after six months of pregnancy I will not be concerned about potential toxic impact on the fetus, although my wife likely will be.
If couple is past child-rearing then there is not any significant risk of toxic impact from one partner to another, oral or vaginal. Condom not needed.
Hydroxycarbamide 
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