Hi @JanPS totally understandable you have questions around this. I’d really encourage you to ask your specialist nurse, or another member of your healthcare team, as they might be able to offer you more tailored advice around this, as they’re equipped with the information around your treatment pathway, medical history etc. I know you said you have a telephone consultation at the end of August, but if you have any questions, don’t be afraid to give them a call or an email. You’re well within your rights to be informed around your own situation and how best to look after yourself. Hope you’re doing okay Jan.
Alice
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https://www.mpnvoice.org.uk/about-mpns/treatments/hydroxycarbamide.aspx
This gives you an answer Further down the info list ( as I thought ) but if you are on other meds I guess it’s best to check .
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@Brenthebaker @JanPS Going back to the chat about alcohol, I have treated myself to a bottle of Seedlip, which is a non-alcoholic distilled spirit, which you can mix with tonic (but I used elderflower presse) and ice. It feels like a grown up drink
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Thank you sounds wonderful, must give it a try. X
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Hi and welcome. As others have said Blood Cancer UK offer some excellent support services. You also have all of us here at the Forum. Many of us have one type of blood cancer or another so can relate to the feelings you are experiencing, especially in those bewildering days early on in your diagnosis. Although we won’t all have the same kind of blood cancer that you have, we have all had very similar experiences and suffered the same anxieties. This forum is a very safe place for you to come and unburden yourself with whatever is worrying you at any particular point. Blood cancer is a long road involving various treatments and you should be kind to yourself and use whatever support mechanisms are available to you. Quite often family and friends are kind and well meaning but can’t offer the same perspective that someone in a similar position can, so you’ve come to the right place. I wish you all the best.
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Hi @JanPS how have you been doing over the last couple of months? You mentioned you had a telephone consultation end of August so I hope it went well and that you’ve been coping okay.
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Hi thanks so much for asking, my consultant didn’t give me a number this time but said all were at a normal level and that because it has been stable for last two tests she wouldn’t need to talk to me for 3 months. I am very thankful for that and will stay on same amount of medication 2 capsules a day until we speak again. I am trying to keep fit and healthy as possible doing exercises walking ect. as I’m a bit concerned my levels can change but doing the best I can at the moment and very grateful for your support.
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Thanks for letting us know @JanPS, good news, but I know those thoughts and feelings around the the fact that my levels could change at any time.
Yes, we are here to support you so please keep letting us know how you are doing.
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Lovely to hear from you @JanPS and to hear your results were stable! Keeping fit is so important isn’t it, for both your physical and mental health. I need to be a bit more motivated. Need to take a leaf out of your book! X
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Hi, I’ve just joined this forum and recently (last Oct) been diagnosed with PV/thrombocythaemia. I thought originally the consultant diagnosed PV, but since notice that thrombocythaemia was added, which as my platelet count two weeks ago was 770 is right. I’m a 78 year old male, born one kidney, always kept fit and watched my diet. But I also have a pacemaker and two leads going into heart for an irregular heart beat and blood pressure ( which I’m on medication for). Anyway since diagnosed I’ve had fortnightly blood letting, which I guess haven’t altered much. So Thursday I am starting 500mg of Hydroxycarbamide, and after reading the affects it can have, is quite frightening. Not only that, why do I start the meds on Thurs, because Tues I have an appointment for a day and overnight stay at the cardiac unit to have my old pacemaker renewed and a third lead put into the heart. Up to a 3 hour opp on local ann. This I’m not to worried about
, it’s the blood
cancer and medication that concerns me. Any reply’s here to help myself, wife and family would be appreciated.
Thank you.
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Hi @Laws I don’t think I can help much but have you asked if the 2 hospital visits can be co-ordinated, I have found that often consultants and wards don’t talk to each other. I hope it all goes OK and I find all medical appointments are so draining emotionally, physically and practically and I am so tired afterwards.
You ask what I can say to your wife and family. I would say, from my point of view, that your wife as the carer can be hardest, sometimes most thankless roll in the world, you also go on the emotional roller coaster and try and keep all the plates spinning as well.
As for your family I think they might also be on the same emotional rollercoaster and want to help, or might not be in a position to help, and not know what to say for the best.
Please share all your fears and concerns on here, we are here to support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Please keep posting what is going on for you.
Hi @Laws. I am sorry to hear that you have rather a lot to cope with medically speaking at the moment. I hope I can reassure you a bit. I took Hydroxycarbamide for many years due to a high platelet count. I now no longer take it because the features of my disease have changed. I have myelofibrosis. 500 mg is a very low dose and as far as I am aware it is usually well tolerated. I agree with you that the drug patient information leaflet is very scary but I tolerated the drug well. I realise that the drug companies have to list every possible side effect that could happen and it is frightening when you read it. Incidentally my mother also takes daily Hydroxycarbamide and has had no problems with it. I wish you well for the coming week. Do let us know how you get on. Warm wishes to you and your family. Willow
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Hi @Laws
If it helps in any way, I’ve got an MPN as well, although it’s ET rather than PV. My platelet count was 800+ when I started the hydroxycarbamide and my count has dropped to a much safer level, so the team at Royal Free is happy with my progress. I was put on the drugs the minute my diagnosis was discovered and as @Willow said, the leaflets can scare you but the drug companies do need to list all possible issues that ‘could’ occur.
I found talking here a real help as I didn’t want to worry my family but needed to talk to someone, so do reach out if you have any issues or as @erica said contact the team at Support Services who are an amazing bunch of people.
Best wishes for your hospital appointment. Hope it all goes well
Lou
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Thank you everyone that answered my message, you have made me and my wife far more positive. Onwards and upwards as they say. And may I add, what a wonderful idea this forum is, although I’m still not to sure how one use it.
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Hi @Laws, you’ll get used to the technicalities of the forum - took me a while! I’m so glad the forum has helped. Keep posting and sharing 
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Hi every one , thank you for the kind comments. Just a few questions hope you can help with.
I am suppose to start 500mg of Hydroxycarbamide on Thursday, when is it best to take this, and how, with food etc?
I take vict c and a capsules also lemon and honey drink each day and eat lots of citrus fruit, is this ok?
I worry because one of the effects it has is it knocks the immune system, any comments on this as at 78years have to be careful?
I did phone the no I was given to phone for advice this morning, but only got an answer phone, can understand they are busy.
Anyway thank you for any information you can give me.
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Hi @Laws. So understandable you have these questions. When you rang the number you were given earlier did you leave a message for them to call back? Hopefully they will get back to you soon. Your healthcare team will be best placed to talk through your questions with you and offer you advice in the context of your individual circumstances so don’t be afraid to be persistent. Healthcare teams are understandably busy, but everyone has the right to feel informed around their individual circumstances.
Do give us a call if there’s anything we can do to support you.
A warm welcome to the forum by the way!
Alice
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Hi @Laws, yes as @Alice_BloodCancerUK says these natural questions are for your medical team and if you get an answerphone it is worth leaving a message and say that you are anxious to do the right thing.
Please let us know how you get on.
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Hi there @Laws we just thought we’d find out how you’ve been since your last post, everything ok? did you manage to get through to your healthcare team?
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Hi Su, thanks for that, every one is so kind. I had my pacemaker procedure on Tues as a day patient, no beds at our hospital, but all seems to have gone well. Weds the wife and I rang our health care team and they were very helpful, told us things we didn’t know and were a bit shocked, ie on the chemo tablets for rest of life and life shortening. But it’s best to know, and they were very supportive.
Thursday was the first day to start the Hydroxycarbamide, seems unreal to use gloves etc when handling them, and to take care. But I’m all ok so far, just a bit tired.
Thanks again for the message.
Laws
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