Finally start treatment

[Cokopops]

Good morning all. After being diagnosed with E T almost a year to the day, I will start treatment. Feel apprehensive..Should have asked more questions..but on the phone I find it more difficult... Meant to ask the haematologist about having sex while on this hydroxycarbamide.. Any advise please. Stay safe everyone

[Mazcd Partner MPNVoice]

Hi Cokopops, the information on our website should answer your questions, and in particular: 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.

mpnvoice.org.uk/about-mpns/...

I hope you get on ok with they Hydroxycarbamide, we all understand how you are feeling about starting it, I was very scared when I had to take my first tablet, but 14 years on I am still taking them and feeling fine.

Best wishes, Maz

[Runner999 in reply to Mazcd]

Maz, I have never heard of the suggested condom use before!

I have just re-read the whole leaflet that comes with my pills - and there is no mention except to use contraception, not to use if pregnant, hoping to become pregnant or breastfeeding, and that men might wish to preserve sperm.

Likewise, the chemist at UCLH who issued my first prescription ran through loads of dos and donts (washing hands, keeping away from children or anyone elses medicines etc)

I am a post menopausal married woman- so we never even think of using condoms!

Where did you get this advice from please?

[Mazcd Partner MPNVoice in reply to Runner999]

Hi Runner999, this information has been included in our information booklet, which we have recently updated, see page 5 mpnvoice.org.uk/wp-content/...

[Mungestar in reply to Mazcd]

Should say Maz just spell check sorry

[Mungestar in reply to Mungestar]

Oh my not sexually crazed it should say at all🥴🤣🤣. My goodness I need check my writing.

[Cokopops in reply to Mazcd]

Thank you for your reply. Best wishes

[Mungestar in reply to Cokopops]

Thank you for your question. I ope your treatment proves helpful. All the best🌱💚🌱

[Mungestar in reply to Mazcd]

Max are you saying that even post menopausal women should use condoms? My husband and are older and sexually crazed but love making or playful sex can be relaxing for us all. Is it imperative if you’re taking hydroxcarbamide. Also do you feel worried about taking it for long durations or fear any leukaemic transformations? What do you think of interferon as a treatment plan for potential remission? Is this a real possibility? I’ve read several medicine journal articles but I’m more confused than ever. And since you administer and have experience with hydroxy I’m curious. I don’t have serious side effects from hydroxy over 5 months but definitely dry skin, itch which I manage with my own salves. But the worst is the sore joints which are cured with Epsom salt disks three times a week. I live in the UK countryside and it can get damp and cold in an old 250 year stone house barn conversion. Keeping my core warm makes a massive difference in joint pain. I drink organic cherry and blueberry juice and hiscus tea infusions. Lemon water in the morning. Vitamin D supplements 3 times a week or so. But everything I’ve read say hydroxy is the death sentence. I’m not finding it as harsh as I thought it would be.💁‍♀️

[hunter5582]

It is certainly understandable that you would have questions when initiating any new treatment. You should be sure to have all of your question answered before you initiate treatment with any medication(s). There is a risk/benefit profile to each of the medication options for ET. Hopefully the hematologist outlined each of your choices and reviewed each of your options. There is more than one choice. See the attached recommendation for how to make this choice by Dr. Harrison.mpnjournal.org/how-i-treat-...

It is reasonable to have concerns. Hydroxycarbamide (HU) is a "highly toxic medication with a low therapeutic index." (American Society of Health System Pharmacists) It is a teratogen, carcinogen, mutagen, and potential leukemogen (if used more than 10 years). That is why it is important to protect others from inadvertent exposure. This is NOT to say that the benefits do not outweigh the risks in your situation. That is something you need to review with your hematologist. I am thinking that you are a female age >60, but just in case that is wrong-- For people of childbearing years, avoiding pregnancy is important since HU is a teratogen. For men, HU can also cause oligospermia/azoospermia as it can compromise testicular tissue function. This effect is not always reversible, so men are advised to consider sperm banking prior to beginning treatment if they want to have children. Women must discontinue HU 6 months prior to conceiving, Men must wait 12 months. As Mazcd indicated, HU can pass into semen/vaginal secretions so a condom is advised to protect the partner from inadvertent exposure. The person taking the medication should always wash hands before and after handling the HU. If the partner even handles the bottle, he/she is advised to wear gloves. This is particularly important for women of child-bearing years.

Here are a few reliable sources of information about HU.

drugs.com/monograph/hydroxy...

cdn.upmc.com/-/media/cancer...

Please be sure to base your treatment decision on facts not fear. As Mazcd indicates, many people do benefit from HU and are able to tolerate it. If you choose to try HU and are unable to tolerate it, the side effects usually disappear then you lower the dose or discontinue it. Ultimately you have to decide whether the risk/benefits of HU outweigh the risks/benefits of the other treatment options (e.g. Pegasys) or continuing to treat the ET with aspirin only. Provided you make a considered decision based on facts, you will make the right decision for yourself.

I hope the information helps. Please do let us know how you get on.

[Cokopops in reply to hunter5582]

Thank you for your reply and information. The leaflet my haematologist gave me must be outdated..! I will chat with him again soon and point this out. Best wishes

[hunter5582 in reply to Cokopops]

Not so much outdated as incomplete. There is considerable variability in these patient leaflets. That is why it is so important to check multiple sources. It is also why it is so important to ask doctors the right questions. It is also the case that sometimes pharmacists know more abut drug interactions and side effects. They ate another excellent resource.

All the best as you move forward and make decisions.

[FG251]

I’ve been reading about Ropeginterferon and its efficacy in the treatment of PV, not only at a haematological level but at a molecular level. In some patients this has pretty much ‘cured’ them, potentially opening the way for treatment discontinuation - unless I’m mistaken. If so, it could replace HU as a first-line treatment. Currently there’s a trial under way for its use in ET patients who, like me, need cytoreduction, but it’s not due for completion until Mar ‘23. Does anyone know more about this potential miracle treatment? I’d love to come off HU.