Oh @Marylin you have a right to be annoyed on all counts.
You are so right I never check the dosage on my repeat prescriptions and medications either.
Perhaps it needs checking out and you are so, so right about the anxiety, stress and hassle it causes us, when fatigue is one of the prime symptoms I manage.
Look after yourself and your own health.
Has anyone else had similar problems?
I’m annoyed for you and am so glad you checked!
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I don’t know if this would be news to others but I have had quite a severe rash on my arms and torso but have found using Double Base cream as soap during a shower as well as a moisturiser afterwards has helped to reduce the rash and itchiness. I have used it as a moisturiser for eczema for many years as advised by a dermatologist. My skin has become even drier since diagnosis and Hydroxycarbamide. The downside is Double Base makes the shower floor slippery and tends to clog the filter.
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Hi @Marylin yes, be careful of the slippery shower floor and yukky clogging of the filter. Look after yourself.
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Hello Rammie,
I am Conchita. I have ben diagnosed with P.V. and also have had 2 venesections. I am also taking baby aspirin and Hydroxycarbamide.
My only symptom ,so far, is a HORRIBLE burning, itching , painful feeling on my legs and arms. It can go on for hours …it makes me cry out loud, it is agony, torment and I am not exaggerating! I hope someone can give some advise on how to relive these symptom. I am also taking high doses of antihistamines but they don’t help
It is a very lonely situation. I feel alone and scared. And the thought of having to live with this agony for ever, makes me want to end my life.
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Hi @oleconchi and a great big welcome
to the forum. I’m really glad you found us as I’m sure others will be able to share their experiences with you.
I completely understand how lonely it can feel at times and I can feel the agony and frustration in your post. The side effects sound really difficult to deal with.
Don’t forget the support line is there if you need it as well.
I look forward to learning more about you and will await others on the forum, with the same diagnosis, who may be able to offer advice X
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Thank you very much for your reply, Nichola. So quick!
I just want to talk to someone going through the same symptoms than me,
because it is so horrible to feel alone and isolated. thank you.
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Oh @oleconchi I am so glad you have found us and I hope others will be able to help you.
Anything that makes you cry out loud, in agony and torment must be horrendous for you.
Have you asked someone on your medical team, or even your pharmacist in the meantime, if they can help you?
Please tell them exactly how bad it is for you.
Feeling alone and scared is so scary and for you to say that living in this agony would make you want to end your life really says something.
You are now not alone you have us to support you and if you would like to talk to someone at Blood Cancer UK the support line details are at the top of each page and the Samaritans is also there for you 24/7, every day, on 116 123.
Have you any support from family, friends or groups?
I look forward to hearing more about you.
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Hi @oleconchi
Thanks for posting and replying…
Yes I’m on interferon and taking venesections now and then… but totally agree… the itching and awkward pains that make things uncomfortable is the worst… I feel like I had it all under control but at times it comes on all of a sudden and I’m totally helpless and too feel alone as there is no one or nothing that can change how I feel or get me through.
Is your iron levels low? I feel that maybe causing or triggering these symptoms but because iron works against keeping your hct levels within a safe boundaries, medical teams are reluctant to do anything about it.
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Thank you for your support. I am at this moment in the middle of one of my attacks …I am in agony, my whole body is burning and itching and all I can say is that I feel abandoned by my medical team. I have told them about it and all the can say is that there is not much they can do to help me
My symptoms are a lot worse since starting the treatment and I cant see the point anymore. I feel like throwing in the towel or give up. stop taking my tablets and just let life takes its course.
I apologise to you all. You don’t need people like me in your group, but I am desperate…I don;t see any hope. what is the point of taking this srong chemotherapy if it cannot relieve my nasty symptoms?
oleconchi
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Hi @oleconchi. Please don’t apologise. It’s good that you have a space to get things off your chest. It sounds like a really horrible experience today. Is it worth giving the support line a call to see what they can advise? They are open until 1pm today X
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Oh @oleconchi I am so glad that you did post, please never apologise your post is just what the forum is here for, I think that feeling of not being the only one is so wonderful perhaps for yourself and also for people reading your post.
It doesn’t take the agony away, I realise.
Yes, we do need you on the forum please keep posting and be kind to yourself.
@Nichola75 has given you the Blood Cancer UK support line details, they are lovely if you fancy a chat with them.
Can anyone else help @oleconchi ?
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Thank you, Erica.
I am feeling devastated today.
I rang the hospital to ask my specialist nurse if it would be ok for me to fly to Spain (Mallorca) to visit my sister who I haven’t seen since the beginning of the pandemic. They told me, yes, as long as you have had the Covid and flu vaccinations . I booked the flights , organised all the papers, told my family…then a couple of days ago I had the worse attack of burning and itching again, I have been in agony for the last two days, taking the maximum dosage of antihistamines. In desperation I rang the hospital, left a message and today they rang me and organise (hopefully) a blood test and a venesection on Monday morning to, perhaps, they said, make it safe for me to fly…
I know I cannot fly like this. Apart from the fact that I hate flying, …so you can imagine how I am feeling at this moment in time. Sad, depressed and disappointed not just for me, but for my sister who has been so looking forward to us meeting again.
I feel abandoned by the hospital. I don’t want to go into reasons as to why just now. This last minute panic could have been avoided, I feel, if they had kept in touch or indeed, answer my calls when I ring, not 24 hours later,. So, there it is, my letter for today. Thanks for reading it.
best wishes to all. oleconchi
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Oh @oleconchi you must be feeling absolutely devastated, sad, depressed and disappointed today, what a rollercoaster of emotions you must have been on, you get your hopes up, book, organised everything and tell everyone and then you get the worse attack of burning and itching again and you have been in agony for the last two days.
I just don’t know what to say.
I am sure we are all thinking of you and I really hope start to feel more comfortable soon.
If you would like to speak to someone the Blood Cancer UK support line is there for you and please keep letting us know how you are and what is going on for you.
Look after yourself and take care.
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Hi @oleconchi. What a horrible day alongside really hard emotions. I wish we could all make it a little better for you. Remember the support line is there. Please keep posting. We are all here for you X
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I totally empathise with you… You are not alone… My itchiness is driving me crazy… I too feel I’m slowly giving up, giving up in the people around me, around the situation around me and just everything really. I try to think it’s really me thats at fault and it’s my problem giving people and everything benefit of the doubt… How can only one person be right and so so many be wrong in attitude, thinking behaviour and presence… But then I think no I’m not going crazy… The dots are too easy to join… but that only makes me feel worse .
I feel for you… I’ve seen too many Sides of the coin and can’t really say whether you are right or wrong in your thinking… But it’s so important to talk, share and express about how you are feeling. Sometimes it’s the best medicine and treatment and I’m so thankful that bcuk provide a platform to do just that. Sometimes once it’s out, the problem and ill feelings are somehow and unexplainably elevated.
I wish Polycythaemia vera (PV) brought a more physical presence as it would make it so easy to explain and relate…
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Hi @Rammie18. It’s so tough isn’t it. Any condition that doesn’t physically show symptoms - or require treatment that does, causes some many difficulties.
The side effects of the drugs that you both describe must me so difficult to live with. I can only imagine how hard that is. Has yours become more difficult lately? I know you have had the side effects before but it seems worse in your post? I assume there is nothing they can do for you, just the previous things people have shared? That makes it even harder I imagine!
I hope it’s helped you to share as well. We are all here to support you to X
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Hello there @oleconchi, I am so sorry to hear about your symptoms and the disappointment you are feeling about your trip. I am pleased that you do have an appointment for Monday which may at least give you the opportunity to discuss your symptoms and get some clinical input. As the wonderful Forum Supporter said, I am here over the weekend from 10am - 1pm each day if you so need some support Blood cancer support | Blood Cancer UK. Take care Gemma
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oh @oleconchi that’s awful. I’m so sorry. Having something to look forward to and then having it snatched away so cruelly must hurt. I do hope that things get resolved for you and you’re able to reschedule your trip.
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Oh @Rammie18 that itchiness must really be getting you down, sending you virtual hugs.
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