Hello! So I’ve been going through a Polycythaemia vera (PV) diagnosis recently, I’ve apparently had it for over ten years, I’m not even thirty yet. My symptoms are actually insane. Everywhere I look I can’t find anything about throwing up. I am so very sick all day, every day. I can’t eat anything, it immediately comes back up. I’ve been living off of crackers for over two months and can’t even keep those down. I’ve been nauseous to the point of not eating for years. There’s lots of blood that comes out of my nose and mouth as well. I’m dropping weight like crazy. I try to drink water and Pedialyte to stay hydrated but it just makes me nauseous. I’m cycling phenergan and zofran but it doesn’t even touch the nausea and vomiting. My skin itches SO badly, literally everywhere. I do not have to take a shower or bath, it’s constant and so severe. Even weird spots like my eyelids and finger tips itch/burn. I have horrible weakness and pain in my body to the point where I can’t even get out of bed most days. I have so many days where I just can’t keep myself awake. I have a colon infection now and can’t keep down the antibiotics. I can never see straight and am constantly dizzy. The dizziness does not help the nausea. I get awful migraines as well as sweat like I’m in the Sahara. I get steroids and Benadryl and liquids and pepcid through IV along with therapeutic phlebotomy almost weekly. My doc is thinking about hydroxea but is waiting as long as possible. Last week my blood wouldn’t even come out of me, it was insane! I’ve never seen someone have an opening in their vein and not bleed. I am at my wits end. Does anyone deal with having such unmanageable symptoms?? Is there any hope to get out of this hellish landscape? I stay as positive as possible and don’t ever let anyone see me suffer, but it honestly gets so lonely.never talking about it, as I don’t really have friends or family and don’t want to trauma dump on random strangers on the Internet. 
I hope everyone is handling their diagnosis well and I’m proud of you for being such a warrior! Thank you for listening!
Dear @Tallnsmol ,
Welcome to our forum.
I am sorry to read of your recent diagnosis of Polycythaemia vera (Polycythaemia vera (PV)) and the terrible symptoms you are having, this sounds really difficult for you. These symptoms sound very severe and in view of your symptoms and unable to keep antibiotics down, I would strongly advise you to contact your haematology team or access medical help as soon as possible.
Please let us know how you get on. We are all here for you and happy to support you. Our forum is a safe and welcoming place.
Take care
Fiona (support services nurse)
Hello there @Tallnsmol, welcome to the forum. I’m so sorry to read of all those horrible symptoms you’re tolerating, let alone the Polycythaemia vera (PV) diagnosis. I would not be as chipper or optimistic!
From one Polycythaemia vera (PV) survivor to another, and like dear Nurse @Fiona_BloodCancerUK suggests, I’d say it’s time to have those symptoms checked.
I’m not medically trained but, using myself as a case study of 1, I’d be seeking medical care to help keep food down at a minimum. If we don’t have energy from food then it’ll be harder for our bodies to tolerate the Polycythaemia vera (PV) stuff.
Will you come back and let us know how it goes sorting out those digestive concerns and regaining some energy? You’ll find many of us living with Polycythaemia vera (PV) and related Myeloproliferative neoplasms (MPN) around the forum and I’m sure we can offer further support.
Hello guys, thank you so much for responding! So that’s the kicker here. I go to the hospital with these symptoms, they just end up giving me a bag of fluids or two/nausea meds and send me home. I see my hemo/oncologist and she gives me meds, takes my blood, and schedules me out for another blood draw a week away and a follow up a few weeks out. I am so overwhelmed, I genuinely don’t know how I’m expected to just live like this. At this point I’m begging for the chemo med, because honestly, nothing can be worse than what I go through every single day. My doctor is so kind and caring but sometimes I feel like she doesn’t take me seriously that I’m dealing with all this.. perhaps because I present so well? I try my best not to bum people out, so the only person who sees me at my worst is my dad when he has to carry me to the bathroom and couch, stuff like that. I do what I can to keep a smile on my face and move forward. But some days I am just so overwhelmed and don’t know what to do. Lately it’s been a lot of dragging myself to the bathroom because I can’t even move my legs. Sigh just not sure what to do next at this point, ya know? Thank you again for reading and you are all treasured!
Oh @Tallnsmol sorry to be blunt but that is not good enough care from your specialists, even if they’re being caring. Perhaps tell them how it really is for you. Specialists need to know how their treatments are affecting us so they can adapt them to suit individual needs.
Personally, I wouldn’t want to take chemotherapy unless those other issues had settled down. I take hydroxyurea daily and while it’s considered a mild chemotherapy it can cause pretty severe side effects like the fatigue and digestive issues you’re already experiencing. It took me months to get used to its effects, and 2 years later I’ve finally settled on a dosage that works for me. Your own medicine dosages should be based on how your body tolerates them.
Depending on where you are, other types of chemo might be offered depending on age and risk. I understand that younger diagnosees tend to be offered hydroxyurea unless it doesn’t agree with us, and in that case there are many other cytoreductive medicines like ruxolitinib and interferon.
Perhaps you’d like to read the Blood Cancer UK information about Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK
Just a hunch but if you’re in the US have a look at Blood Cancer United as they’re the American equivalent of BCUK and offer great localised information for dealing with Polycythaemia vera (PV) and other blood cancer support: Polycythemia vera (PV) | Blood Cancer United
You’re not expected to live like you are, impossible as that may seem right now. No one should have to live with nasty fatigue and digestive issues. My lovely haematologist reminds me that we are more likely to live into old age with Polycythaemia vera (PV) and pass away from something else—if our treatment works well for us. Maybe your specialists need to know all the gory details of what you’re tolerating so they can adapt your treatment to suit you better.
Anyway, I’ve gone on again! Please keep us posted @Tallnsmol, I’ll look out for your posts.
Hello! Thank you for your response! My doctor 100% knows all my symptoms. I tell her that I feel like I’m dying every time I see her and let her know all my symptoms, I just do it with a smile on my face. You know laughing and going, “Ahah, oh I’m completely and actually dying every single day, I am miserable, ahah.” She just, I don’t know, wants to stabilize me somehow but the treatments do NOT work at all. It feels like I get worse every day. Should I consider another doctor at this point? Like this is all very confusing and I deal with mental health problems already on top of it all, so it can be super hard to navigate it all alone. I completely understand that chemo can ruin your body, but my goodness, I am just praying for something to change, some kind of relief, at some point. I will read more into it and look at the links you shared, thank you very much! I appreciate the support!
You’re welcome @Tallnsmol, the forum was here for me after my own diagnosis and I hate knowing others like you go through all this.
I understand that your doctor is trying to stabilise stuff but quality of life is an aspect of healthcare too. My first haematologist turned out to be awful at this, the caring part, and minimised the horrible side effects his treatment caused. After months of this he made further unforced errors and I just lost all trust in his competency, so my family doctor helped me change to my current specialist.
Perhaps the point of referral to your current haematologist could advise you? If it was your family doctor who arranged the referral I’d go back to them and see what they say about changing your Polycythaemia vera (PV) specialist. Hard as it to believe but I’ve read about and experienced haematologists who don’t consider Polycythaemia vera (PV) a blood cancer and can also disregard many of the serious symptoms we tend to experience.
If you are in the US with health insurance then it should be easier to change doctors than via the NHS in the UK. Blood Cancer United in the US have all sorts of support numbers and even their own forum like this. It really is hard to navigate, especially with a rare blood cancer like Polycythaemia vera (PV).
At the end of the day though we have to be our own best advocates, so I’d say you joining us here and wanting to improve your symptoms is great. Let us know how you get on with your doctors, and remember to rest when you need to and resume things later on.