Hi Mimi1 I have just read your post and I hope this helps
I was diagnosed with polycythemia vera at 35 November 2001 I am now 58 so if my calculations are correct that’s 23 years
I had the same worries about the kids growing up
If you have any questions please ask
Thanks
Jeremy
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Hi @Jeremy a great big welcome to our forum.
You have already shown the value of our forum by sharing your experiences with @Mimi1
I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed in 2003 and I had the same worries about not seeing my son grow up , get married and have children. He is now 50yrs old and still never got married or had children, that I know of !!!
I look forward to hearing more about you, look after yourself and please do keep posting.
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Hi Jeremy, thank you so much for your comment!!! How are you feeling now? What treatments have you had? Has anything become worse? thanks so much 
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Hi Mimi1
Overall I’m doing good thanks
Treatments so far lots of venesections hydroxycarbamide for 11 years
Interferon Pegasys for 8 years
4 years of watch and wait
As they say no free lunches so a couple of BCCs (Basel Cell Carcinoma) from my face probably from the hydroxycarbamide
Hypothyroidism And Diabetes type 2 appeared after starting Pegasus I have no proof about the link but no evidence before hand
Hypertension expected with Pvera
Severe Anemia from all the venesections
But overall I am still here I still work full time which to me helps having commitment’s
Pushing through the fatigue which does make me sleep for days on end at times
I have also found that having explained everything to friends family and colleagues means I don’t stress about being exhausted
I just let them know they will see me when I have recovered
If you want any more detail just ask as I didn’t want to make this reply to long
Both my kids are adults now my daughter is a engineer and my son is a chartered accountant
Thanks
Jeremy
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Oh @Jeremy I have given up thinking about what condition is connected to my Chronic lymphocytic leukaemia (CLL).
I also have never had treatment.
I had had a few BCC’s and 2 operations on the top of my head, the others on my face.
Yes, the fatigue is also my main symptom.
I have never dealt well with stress since I was diagnosed with Chronic lymphocytic leukaemia (CLL).
My fatigue comes after I have overdone it with what personally stresses me or I overdo it emotionally, medically, psychologically, physically, and practically.
Sometimes I need a nap, sometimes duvet dive, or appropriate fresh air and exercise.
Look after yourself and please do keep posting.
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Hi Jeremy - glad you are still here and doing ok! Can I ask what the hydroxycarbamide was prescribed for?
It’s very good to hear from people having gone through this.
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Hi Mimi1
Hydroxycarbamide, also known as hydroxyurea or Hydrea, is an oral chemotherapy drug used to treat blood disorders and some cancers.
It’s used for chronic myeloid leukemia, essential thrombocythemia, polycythemia vera
I hope the above helps
Thanks Jeremy
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Hi! I’ve just seen this - I really hope your husband is doing well. I too am 38 and just been diagnosed(not officially, but Polycythaemia vera is assumed). Right now, I’m JAK2 positive and HCT/HGB are borderline (49.2 and 16.4 respectively). Its been a shock but,honestly I currently have no symptoms. I have been put on low dose aspirin and been asked to do repeat blood tests in 3 months. I try to think positively because this is a long term manageable condition. Nobody knows how it will develop, at what pace, if it will develop at all(likely but still, nobody really knows). I take it day by day and also trust that medical knowledge will advance and its not inconceivable that better medicines or even a cure will come out in the medium term. Keep positive - it will be OK!
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Hi Eli! Thanks so much for the message. I hope you’re doing ok. Keep us updated!
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@eli Hello,
I am 38 years old. I was diagnosed with Polycythemia Vera (Polycythaemia vera ('PV')) during my high school years. As a complication of this condition, I later developed Budd–Chiari syndrome.
My initial diagnosis came after a blood clot was detected, which led to further evaluation, including a liver angiogram, ultimately confirming Polycythaemia vera ('PV').
Today, with proper medication and regular medical follow-ups, I am able to live a normal life with minimal limitations.
If you have any questions or need support, I would be more than happy to help.
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Great to hear from you @turan.simsek with an update on your medical problems and medical follow ups.
Thanks for your offer of supporting others with your experiences,
Look after yourself
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Thank you so much! What medication are you on? My husband is now 40. Having to go through regular venesections but also now very anemic so needs to take iron which means his red blood cells are increasing and it’s a nightmare!
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Hi @Mimi1, I hope you don’t mind my jumping in briefly.
That’s a very common balancing act for people with Polycythaemia vera ('PV'). As well as getting some advice in this thread (thanks all) you might also find it useful to look at this post from another forum member who was navigating a similar challenge with iron levels after venesections.
And if you’d like to talk anything through and get some advice from our wonderful blood cancer nurses, our support team are there on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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thank you so so much for this!!! really helpful
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Hello,
I was initially using Hydrea 500 mg, Coraspin 100 mg, and Warfmadin 10 mg. After a while, Hydrea caused side effects, specifically redness and itching on my legs, below the knees. My doctor then switched me to Jakavi 10 mg, which I’ve been using for about three years. I can say the itching and redness are gone now.
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thank you! glad to hear the itching is better.
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