I have Polycythemia with Jak 2 Mutations and /Thrombocytopenia

[fairytabu]

Hi I wonder if someone could please advise me x I’ve recently been started on I tablet 500mgs of Hydroxycarbamide a day x I’m in a new relationship and I wondered is it okay for intimate relations or should I be using some sort of protection for my partner? ie condoms? we are both early 60’s x

[Cat1001954]

hi I’m on hydroxy 500mg daily I’m 69 I have triple negative ET. I also asked this question last year when diagnosed and it’s your choice they advise condoms but we don’t use them it’s your choice and your body only rule I have is to wash straight after no waiting hope this helps I would not do oral while on oral chemo

[Scottishterrier]

Hi When I was put on Hu I was told that I could not have children by my consultant as it would affect the child and not to have unprotected sex it put paid to my engagement as my fiance was great about it but his mother had other ideas as she wanted grandchildren and I could not have them so my fiance broke relationship of so listen to your consultant and take their advice and have a serious conversation with your partner

Stay safe

Scottish terrier

[Wyebird in reply to Scottishterrier]

wow that’s awful

[Plate in reply to Scottishterrier]

I am sorry your fiancé was so shallow in not taking your needs into consideration. As Hunter mentioned, there are many ways to get around this.

I have two adopted children and I feel as though I gave birth to them.

Sorry for your loss.

[hunter5582]

This question requires a somewhat nuanced answer that has to do with your life goals and risk tolerance for you and your partner. There are two issues to address.

Risk of exposure to HU. "Hydroxyurea is a highly toxic medication with a low therapeutic index." American Society of Health System Pharmacists. HU passes into semen and vaginal secretions. The level of exposure with unprotected sex is relatively low. The primary risk is irritation of genital tissues. Not everyone will experience this problem. Some choose to ignore the risk. It is a matter of personal choice. The more conservative recommendation is to use a condom. ethrombo.blogspot.com/2017/...

Teratogen and Fertility. HU s a teratogen. It would pose a significant risk to a pregnancy. If you are both in your 60s then this may not be as significant a concern. HU can also cause oligospermia/azoospermia (decreased sperm count AKA hypogonadism) in males. This is usually, but not always, reversible. Sperm banking is recommended should a male want to someday have children. It is recommended that females wait 6 months and males wait 12 months after discontinuing HU should they want to have children.

Since you are convened about protecting partner, there are handling instructions for HU that you should be aware of. The short version is that you should always wash you hands after handling HU and your partner should wear gloves if handling the HU or the bottle it is contained in. oralchemoedsheets.com/sheet...

Hope that helps to answer your question.

[Cassandra61]

Hiya,

I am sorry you have the double pressure of a new medication and new relationship, I really hope both enhance your life and make you very happy.

I have been on Hydroxy for about 18months and I asked the sex question as prompted by the excellent answer and resources from Hunter . The answer from my Consultant was that basically the risk wasn't hugh as I am an old lady passed the menopause . I talked it over with my partner and we agreed that condoms might be the way to go, mostly because I wouldn't feel happy putting him at risk. I also asked about oral sex which apparently nobody had ever asked before !!!! She said the risk was really low. I think a good wash of your hands and anywhere else might be the solution but my Consultant said that mostly Hydroxy mostly left the body through the kidneys and your wee. I do wash my hands after handling the tablets and make sure to drink 3 litres of water a day. I think talk it over with your partner and your consultant and then make an intelligent decision that you can live with. Wishing you all the best and happiness in your new relationship.

[Shadowperson]

in reply to fairytabu. I take Hydroxy for my PV. 500mg ev other day and 1,000mg ev other day. So far fatigue seems to be the most "active" side effect. I nap 60-90 minutes daily plus get maybe 6 hrs. sleep otherwise. I also have REM:SBD so my sleep is not that restful. My blood is monitored quarterly by the VA in Baltimore. Have you ever heard of shadow people? They check on me now and then. Tough to get to sleep and stay asleep with them around. I am 76 and have been told by my oncologist/hematologist that I should make it to my statistical year of death:14 years on average from now if diagnosed early enough and 20 years max, more or less. I am the only one in my family with the PV diagnosis. Lucky me, eh. Hang in there and keep a positive outlook. While there is no cure today, who knows what2030 will bring. Stick around.

[MichaelS in reply to Shadowperson]

Hello Shadowperson, just to put your mind at rest about longevity; I was diagnosed with PV in May 1983 and was on hydroxyurea most of the time. It changed to MF around 2009/2010 and since 2013 I've been on Ruxolitinib. I am the same age as you, but soon to be 77. Every person is different of course, but try not to be concerned about longevity, but enjoy life as long as you are able. Very best wishes from Michael

[Shadowperson in reply to MichaelS]

Many thanks for the positive outlook.

[Nrl303 in reply to MichaelS]

I hope you make it way longer than 14 years. I’m 26 and have PV