New member needing support

Hi

I'm a new member. My husband was diagnosed with PV recently and we are getting used to the whole thing. Finding it a bit scary - fear of the Unknown. Going to an MPN Open Day really really helped. He's just started on hydroxycarbamide and getting very sore bones. Scared the drug might trigger something worse. He's anxious which is unlike him. It's making me anxious too. Should we speak to the nurse?

33 Replies

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  • I got no side effects from hydrea and I've been on it 3 years. Everyone is different -good luck to your husband.

  • Thank you for your reassurance.

  • Hi, you've come to the right place for help and support and Maz our editor can send you lots of info if you wish, I expect she'll spot your post and respond. Lots of people on here have been on Hydroxycarbamide for years with no or few problems and hopefully your husband will get used to it and be fine, we are all a bit apprehensive at first. I took it for two years and was fine. I think bone aches can be one of our symptoms. If you are both anxious why not speak to the specialist nurse or your consultant and I'm sure you'll get lots of reassurance here too. Best wishes Frances.

  • Thank you for your kindness in replying. I am already overwhelmed by all the responses. Actually got tears in my eyes because of all the support. Feel so much better. Next step is to join Angus my husband up to the forum. Thank you.

  • If you are both anxious then do speak to the nurse, it can only help. I think the early stages after diagnosis can be quite scary, until you suddenly find you haven't though about the PV for ages.

    As others have said, lots of people cope well with hydroxycarbamide, I hope your husband is one of them. I've been taking it for 29 years, with few side effects.

    good luck, Fee

  • Wow! That's a long time and very reassuring to hear that. Thank you for the support. Feeling less scared already. Amazing forum.

  • there have been studies of hydroxy over i think 20+ years and it seems very safe over this time period - indeed it may give some protection against the disease progressing as it slows down scarring in the bone marrow - so i don't think u should feel in any way that hydroxy "might trigger something worse"

    re bone pain I understand that this may sometimes be caused or exacerbated by your marrow being over active so this might improve as the hydroxy slows it down

  • Really good to hear about bone pain as something that happened to others too. Couldn't find it in the list of side-effects, hence the anxiety. Thank you very much for the support. So glad I found this forum. It seems to be populated with very lovely people.

  • Hello MarybellM, welcome to our forum, I hope that being able to have contact with the people on this forum will help you, we all understand what you and your husband are going through, it is a very scary time when you are first diagnosed and it does take a while to understand most of it. I also understand your husband's concerns about starting Hydroxycarbamide, this is a fear/concern/worry that we all experience when we are given the tablets, I am on them myself, have been for about 7 years now, and it is very worrying, but all I can say for myself is that they made a huge difference to my quality of life, I was experiencing really bad symptoms, but now I take them without thinking. I also understand your concerns about Hydroxycarbamide triggering something else, it is very rare, but that there is a possibility that it may increase the risk of skin cancer and also a possibility that it may increase the tendency of MPNs to change to a form of leukaemia, this is very uncommon and it has not been proven that this is the result of treatment with Hydroxycarbamide. With all medications, even paracetamol, there are side effects and risks when taking them, but this is all dependent on the person taking the medication, so it is not necessarily going to happen to your husband.

    I can send you some of our information booklets in the post if you email me your address maz.cd@mpnvoice.org.uk, or you can download them from our website

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

    Have a look at our website, if you haven't already mpnvoice.org.uk you will find lots of useful information on there including real stories from people with MPNs and videos of people talking about their MPN journey, and also videos from leading haematologists.

    I would also suggest that as your husband is feeling anxious about it, as you are yourself, that maybe having a buddy to talk to will help, a buddy is someone who has the same MPN and takes the same medication so can give help and advice from the perspective of someone who really does understand how you are feeling, if you would like some more information on this please email me. It might also be worth asking your doctor about seeing a counsellor for the anxiety.

    Best wishes, Maz

  • Thank you Maz! I met you at the Inverness open day last year and it was a very positive experience. I have visited the website and it is clear and helpful but due to not being very social media savvy I didn't know how to get onto the forum. I stumbled across it last night when I googled hydroxy + bone pain. Now I feel that I've reached an oasis in the desert of our recent anxieties. I am totally overcome by the kindness on here. Will email you about a buddy. Thank you for your tireless work and detailed answer.

  • Hello Marybell, we did indeed meet last year, I wasn't sure if it was you. Glad you have found this forum. Maz

  • I've been on Hydrea for years. Keep following the MPN Health Unlocked advice and posts. Good luck! One thing, this illness makes you value your life.

  • Thank you for your response, lucieboo! Much appreciated.

  • Hello MaryBellM,

    Welcome to our group. I have only been a member for a year(a newbie too), but the help and information that I have received here is second to none.

    Absolutely, speak to your nurse. You don't say where you are, but my dedicated nurse is in the UK and they are so helpful. I find that the haematologists do not appear to have time to answer all our worries, so the dedicated nurses are happy to take up the slack.

    For my part, I have been on hydroxycarbamide for a year without any serious consequences. I do suffer fatigue, some bone pain and a few headaches. Copious amounts of water helps with the headaches (two and a half litres a day). The really good news his that the drug has reduced my platelet count by half. Bonus!

    I do hope that you get the answers that you need and that your husband keeps well.

    Hugs,

    Marcia

  • Thank you very much for your reply, Marcia. We live in the Western Isles of Scotland so my husband is the only person with PV in the whole of our islands and beyond. For treatment we link up with Inverness and my husband does phone consultations with a very able and caring specialist nurse. The forum looks like a life-line to me. I was at a low ebb last night when I found it. Today, I am a new woman! My next step is to pass all the positivity to my husband and get that weight of anxiety off his shoulders. THANK YOU and hugs back. Marybell.

  • Hi marybell! I'm really glad to hear that being on this forum has helped so much. It has helped me considerably too (I read more than I post). I was diagnosed with ET (then later upgraded ;) to PV) two years ago at 37. I'm not on hydroxy but on interferon, which comes with its own set of worries and side effects. I have found some things have helped me with bone/leg pain:

    1. Communicating with my hematologist and discussing dosing. My side effects were a result of being taken up to too high a dosage too quickly. Lowering my dose a little helped tremendously.

    2. Staying hydrated (something that I've discovered comes up a lot with the medications we're all on).

    3. Finding support and reaching out (welcome!)

    4. Heating pads. I have a nice size heating pad and it has helped tremendously, especially when my aches and pains were particularly bad.

    5. Meditation and working on detachment (an individual journey for everyone). I know it might sound so silly but it really helped me to get perspective when I was initially diagnosed, and was very scared. Most days I don't even think about it anymore, it's a part of my life but it doesn't control my life. It took some time for me to Have that perspective.

    It just occurred to me that perhaps your husband might benefit from joining this forum also, especially since you mention he is (naturally) anxious about it all also?

    Best to you both!

    Sharon

  • Some great ideas - I'll try getting a heat pad. That would be really comforting. I'm away for weekend so haven't been with my husband when all these great responses have been flooding in. I sent him the link so he could read everything I posted and all the reassurance too. He might well decide to join himself too. Lovely lovely place to be. Still can't get over how helpful and kind people are being. Makes me want to give something back. Hopefully I'll be reassuring other new members a couple of years down the line...

  • We've all been where you are, to greater or lesser degrees, so I think for many it is easy to empathize. :) Everyone I've encountered here has been nothing but helpful and kind and generous with themselves and their knowledge. You'll always find support here! Take care,

    Sharon

  • Hi, I am sorry to hear of your husbands dx. I was dx with PV when I was 33 just 3 years ago, I've been on Hydroxycarbamide since the beginning along with warfarin. My bloods are mostly in range besides some anaemia but I do have side effects; bone pain especially hands, feet and hips, night sweats when I can sleep, or insomnia and tiredness regardless and the occasional bout of breathlessness, these side effects or symptoms of PV happen rarely and never all at the same time...so daily I might not notice anything. I keep a diary of it all. However, medically I am fine really. I understand your husband is likely to be anxious, the best bit of advice I can offer is to go back to normal life as soon as possible. I am working full time and try to do everything I used to prior my dx. I eat clean, I don't drink, I try to walk a bit.

    Please don't feel like your on your own - either of you, there's lots of people here with lots of information, ask your questions we have all been there and know what your both going through xx

  • Thank you so much for your caring reply. I'm new to the world of forums too so might make a few errors. Can't believe how good it is to find this forum. Xx

  • Thank you Mardi.

  • Hi MaryBellM,

    Anytime. I mean that. I log in most days and if you need anything at all, even if it's just a willing ear there is always someone at hand to listen, help if they can, and point you in the right direction if they don't have the answer.

    You are not alone and we have all been where you are at some point.

    Maz, the director of our group is very knowledgable and has a link to a specialist in the field of MPNs. She will help I'm sure on the more technical issues. Welcome again and sleep easy tonight.

    Hugs,

    Marcia.

  • Thank you again. I feel emotional (in a good way) because of all the responses I got to my first post. It's not just the diseases that are rare here - it's the kindness of the people. X

  • That is exactly the way we all felt when we came here Mary. They are a really lovely lot of people from all over the world. Well perhaps the people in Scotland are a little bit reserved eh!

    My nephew was a captain of a submarine at Faslane. He said that the people take a bit if understanding, but the scenery is the most beautiful in the whole world. He has been to most places too.

    Smell the coffee, look at the beauty and rest easy Mary.

    Most of us manage to live an almost normal life when we get over the initial shock.

    Hugs,

    Marcia.

  • Welcome to the group.

    My husband has had pv jak2 positive for 4.5 years now.

    He's on asprin and 500mg daily of hydroxy. He's had no side effects only a dry mouth, but that's nothing.

    He's very well and leads a normal life he gets check ups every 3 months and a pint of blood drained (venesection)

    He used to get itchy legs and terrible headaches, but since starting hydroxy all these symptoms have gone.

    He was having monthly venesections, so he was so tired from the lack of iron. He opted to try hydroxy it's reduced the number of venesections.

    Good luck Tracey

    Ps it's very scary when first diagnosed but it all hasn't been half as scary once we've spoken to other people.

  • Thank you Tracey. Lots of good practical advice. I wrote a long response to you but can't see it (must have done something wrong re posting). I like the idea of the heat pad.

  • My husband went through terrible fatigue. He cut out caffeine in October last year and hasn't looked back he feels so much better. The headaches were from the caffeine not the pv.

    X

  • I will say pv is covered by critical illness policies.

    Just thought it was worth mentioning.

    Your husband is entitled to free prescriptions too.

    Tracey

  • Hi MarybellM, I am newly diagnosed too and scared about taking the chemotherapy but so far so good🙌 I have been on it 3weeks. I found the McMillan nurses very helpful 0808 808 00 00 and as you have already experienced this site is great, so you never have to feel alone, I am also starting counselling on the 24march for my anxiety, ask GP.

    Best wishes to you both Angelina

  • Thank you Angelina. I'm feeling very much more positive after finding this forum. I know I'm not the one with the illness though; it's not so easy to relax about it when you actually have it. I do believe that mental attitude can really affect a person's physical health, so with my husband's PV I'm trying to keep both our spirits up and like someone said in another post, aim for as normal a life as possible. Good luck.

  • What I have just realised to day Marybelle, is how abnormal my life had become before my diagnosis, the process of the disease was so gradual and hard to detect, and since starting the chemo the me that was being drowned by the disease has slowly with the chemo improved, I have found eating parsley helps my stomach and nausea.

  • That's interesting Angela - the point about pre diagnosis being actually pretty abnormal. My husband was diagnosed when trying to give blood at blood donor centre in Glasgow and his thumb prick test showed high iron. However, looking back he actually did have lots of health problems- headaches, pains in his back, forgetfulness.... I'm just thinking of them as I write. That may all be to do with the PV. Another thing he has is an distended abdomen which we both put down to bad eating habits. Could this be another PV thing?? Thank you for your thought-provoking post!

  • Hi Marybelle, I think you will find they areare symptoms, the disease is very gradual,!!!:) best wishes and I hope life improves and becomes more settled for you bothxxAngelina

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