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[indy22]

Hi I am glad to have found this site I have ET, diagnosed about 10 years ago only been taking Aspirin but now my doctor wants me to start taking Hydroxycarbamide. I have been feeling anxious about taking this tablet and to be honest I hardly ever took Aspirin because the thought of taking any tablet gives me the fear even taking a paracetamol . I have also to go and get another marrow biopsy done.

[Scottishterrier]

Hi

[Scottishterrier]

Hi indy I have been on hydroxcarbomide for many years you may feel very tired so if you can try and get a sleep in the afternoon it may make you feel a bit nausea you can get an anti emetic best one is called domperidone one three times a day but work wonders and also hu does keep the platelets down I would recommend it to anyone and all though it is classed as chemotherapy there is no virtual hair loss if you are planning a family it's advice not to as it effects the fetous also in summer wear a hat and use factor 50 as it makes the skin photosensitveStay safe best wishes

Scottish Terrier xx

[indy22 in reply to Scottishterrier]

Thanks , I feel very tired already and haven't started the tablets yet I can sleep at the drop of a hat ! I am getting older live on my own with my grandson I am his kinship carer , I have brought him up from 1yr old he's now 7 so I would say that probably contributes to my tiredness and they want me to look for a job ! I don't have the energy . I have also to go for another bone marrow biopsy to see if maybe I have MF so not looking forward to that .

[socrates_8]

Hey Indy...

Lovely that you are raising your grandson, but I've no doubt that contributes greatly to depleting of your energy reserves etc...

Worth having the BMB too... However, if I were you I might be asking my MPN Specialist, about having Pegasys' in place of HU, if that's a possibility(?)

Just a thought is all...

Best wishes

Steve

[Mazcd Partner MPNVoice]

hello indy22 and welcome to our forum. Completely understand how you are feeling about having to start taking Hydroxycarbamide, it is very daunting when you are advised to do this and a big decision to make, especially if you are fearful of taking any medications.

I would advise that you read as much as you can on our website about Hydroxycarbamide and other medication options, this will give you a better idea of what they are and what they do. And before you make your decision it would be best to have a frank discussion with your haematologist, ask why you are being advised to start medication, what are your risk factors if you don't start it, and what are the benefits if you do. And write down your questions and take them with you when you see the haematologist so that you don't forget to ask something.

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

this also might help you, information on treatment decisions:

mpnvoice.org.uk/living-with...

and talking with your doctor:

mpnvoice.org.uk/living-with...

It might also help you to have a buddy to talk to for one-to-one support and advice. A buddy is someone who has the same MPN as you and takes the same medication, if you take any, and can give you lots of support and help from the perspective of someone who really does understand what it is like living with ET. If you would like to have a buddy then please email me at [e-mail] and I can get that sorted out for you.

With very best wishes, Maz x

[hunter5582]

Glad you found the forum. It is a great place to get support and information from a patient perspective.

I am inferring you must be nearing age 60/65 and the hematologist is applying the standard protocol for ET, that calls for cytoreduction based on age. Most docs, but not all, do apply this protocol at either age 60 or 65 regardless of the individual patient-risk factors. Mazcd already provided some good links to information. Here are a couple more that may help.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

As Socrates pointed out and you will read in the two articles, there are several options to treat ET when you do need cytoreduction. It is up to you to review the risks/benefits of each of your options. The two primary choices are hydroxycarbamide and PEGylated Interferon. You will hear quite mixed reviews of each of these choices as we each respond differently to these drugs. I would suggest that you research each of your options, create a list of your questions and concerns, and speak to your hematology care team about your choices. Here are a couple of references to get you started.

Hydroxycarbamide - aka hydroxyurea

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

Pegasys

drugs.com/pro/pegasys.html

online.epocrates.com/drugs/...

HU vs PEG

mpnforum.com/hu-int/

In making this decision it is very important to consult with a MPN Specialist, not just a regular hematologist. Most docs do not have the KSAs to provide optimal care for MPNs due to their rarity. Here is a list of docs with the requisite expertise mpnforum.com/list-hem./ .

All the best to you on the next phase of your MPN journey.

[indy22 in reply to hunter5582]

Thanks for the advice and yes I have just turned 60 🙄 I will look up as much information as I can and try to reach a decision. I have a few weeks as waiting on my appointment for marrow biopsy before I start any treatment.

[Quercus53]

HII hope you are feeling a bit more comforted from all the comments?

I am just an aspirin girl at the moment too although every hospital visit they try to persuade me to go on hydroxy or one of the other drugs.

My platelets are around 530 - 560 but pretty steady, I have refused to take any toxic drugs for now. I just feel it isn't right to introduce toxicity into my body and the associated side effects when I am pretty stable. I also have chronic RA and have to take methotrexate for that by injection, at the lowest possible dose.

If you don't like taking tablets this is going to be a huge step for you, should you decide to start other drugs. It is something you should weigh up based on professional medical advice and also your own fears and feelings.

Ultimately it is down to you to decide, it's your body, and don't forget that if you decide to give it all a try, you can always change your mind or change your medication.

I wish you all the best, you are still young at 60 and I admire you for looking after an energetic 7 year old. Hey, any normal 60 year old would feel exhausted doing that!!

xxxxx

PS I also use this forum forum.bloodcancer.org.uk which is also useful

[indy22 in reply to Quercus53]

Thanks for your reply, it is a difficult pill to swallow (pardon the pun ) when your whole life you have been healthy and never been in hospital apart from childbirth ! I am afraid of having any side effects but also afraid of having DVT or clots so we can't win can we . I know I will have to make the decision sooner or later and I am thankful for all the comments to help me come to that decision. I have also just been for Xray for my hands to see if I have arthritis! I had covid over xmas and since then I have had bother with my stomach but thankfully I didn't need hospitalised I put that down to giving up smoking a year ago 🙄

[Quercus53 in reply to indy22]

Yes I have osteoarthritis in my right thumb and left index finger. They are practically useless now but I can still unscrew the top off the wine bottle!!

[indy22 in reply to Quercus53]

Hahaha brilliant 😁