Recently diagnosed.

[Atlantic5]

Hi, I am a 48 year old female who has been recently diagnosed with MPN- ET (JAK2) I had a brain hemorrhage earlier this year and the blood disorder was discovered. I think I must have cried for days when the term cancer was mentioned!! My symptoms are extreme fatigue and pain. I am on Interferon and unfortunately have side effects from this. Does anyone have any advice re natural remedies/diet re managing symptoms? I try to stay as fit as possible, having a very active cocker spaniel motivates me to get out and walk everyday! Up until May this year I was working and leading a normal busy life as a mum of 2 teenagers and would dearly love to get that life back again. I am told things will improve so I try to remain positive. I have found this site really helpful and reading previous posts have already answered some of my questions. Thank you.

[Aime]

Hi Atlantic5, big welcome to this forum where , as you’ve already seen, there are a bunch of wonderful people on here who really do understand what you are going through. The C word is so scary I know, but there are many ET and Polycythaemia patients who have been around for a lot of years. Someone described it to me as a football league; top of the league we’re breast, bowel cancers, etc and at the very bottom were MPNs.

If you visit the MPN Voice website, you will find trustworthy information on there and MAz, our editor, monitors this forum.

The advice is to eat healthy, drink plenty of fluids and exercise as much as your body allows you to. Personally I find that sometimes I can push through the fatigue but other times I have to give in and rest - don’t get annoyed with yourself if you have to rest, your body is keeping you right.

You will get to grips with your condition the more knowledge you gain and will feel you have some control of it and not vice versa. To begin with it is bewildering, scary, etc but you will come through that to a stage you don’t think about all the time and have a reasonably normal life with some ups and downs. On the down days, the forum is here to help and people will.

Stay in touch, kindest regards Aime xx😺😺

[Atlantic5 in reply to Aime]

Aime, I was reading through my posts again and couldn't see my reply to you so in case it didn't send I just wanted to say thanks very much for your reply and kind words. Much appreciated.

[Raphael_UK]

You will get that healthy life again, I had same thing, brain haemorrhage and they discovered ET - MPL . I was jogging 5-7 km 3 / 4 times a week before the diagnosis. I’m on permanent Hydroxycarbamide which wiped me out for the first few months, but now getting back to where I was. Keep well hydrated and don’t let the psychology of the word cancer drag you down. Keep positive by doing Yoga Tai Chi or mindfulness CBT training. I think a fair bit of the tiredness is the psychological aspect of this illness, not supprissing. I think we are get so shocked when diagnosed, this forum is brilliant and so so many lovely knowledgeable people here. Raff

[Atlantic5 in reply to Raphael_UK]

Thank you so much for your reply Raff. Very good of you to take the time and to share your experiences and advice. Much appreciated.

[Inca]

Welcome Atlantic,

Aime and Raffles are so right...you will feel better soon,the first weeks of shock do fade,drink lots of water,exercise,dog walking is perfect,but rest when you need to,at first that is hard esp when you want to get on with things,but rest is important, Very Best to you,lots of advice on here and people with much experience of our unusual disease.

[Atlantic5]

Thanks so much for your reply. A month after my diagnosis at a follow up appointment I was given info re MPN Voice. Very grateful to know that there is so much support and advice out there. Thanks a million.

[Mazcd Partner MPNVoice]

Hi Atlantic, welcome to our forum, as you can see from the replies you have had, we are a very supportive bunch of people, so hopefully it will help you to know that you are not alone. Best wishes, Maz

[Atlantic5 in reply to Mazcd]

Thank you so much Maz, I have been very touched by the kindness of others, taking the time to give advice and support. I think it's a brilliant forum. when I was first diagnosed I wasn't aware of MPN Voice and of course googled the condition and got myself into more of a state, particularly as the dreaded word cancer was used. It was a very depressing and bewildering time. It was a month later at a review appointment that I was given the literature about MPN. I really appreciated this as the information and how it was presented was very user friendly. I still feel I am in the early days of coming to terms with all of this but knowing that there is such great support from people going through the same issues is invaluable. I hope in time I will be able to help/ support others too with my own experiences. Thanks so much for everything that you do to make this such an informative, supportive space.

[Hidden in reply to Mazcd]

maz I want to thank very much for all the advice u gave me I was really worried but u managed to put me at ease thank u very much James

[Hidden in reply to Hidden]

is someone with polycythanemia at risk of blood clots if they have surgery

[katiewalsh]

Hi, Welcome to this terrific forum. It’s not the group you’d choose to be with but if you have an MPN this forum is a lifesaver. First, this is called a cancer because the cells multiply but some consider it a benign cancer. My doc said I’m likely to die of something totally unrelated to this. And I know there are members here who’ve been diagnosed over 30 years ago. And generally we’ve had this long before it’s diagnosed. My advice is if you still have lots of problems after a few months, consult with a specialist. They can assess if your med dose should change or the med itself should be switched. It sounds like you may be in the U.K. and there’s a Professor named Claire Harrison who’s supposed to be outstanding. Remember we’re always here for you 24/7. If you ever need some support or a shoulder to cry on please don’t hesitate to come to us. Best wishes during the holidays. Katie

[katiewalsh]

PS. Forgot to mention, if you have specific side effects let us know exactly what it is and we may be able to help. Katie

[Atlantic5]

Thanks so much Katie, I live in Ireland. I have all over body pain particularly in my joints however the haematologist doesn't feel this is connected to the MPN as she said no on else has presented with these symptoms. I went to my GP and ended up going privately to a rheumatologist as fibromyalgia was suspected however he thought it was the MPN!! This has left me confused so wondered if anyone else has such pain? Also the side effects from the interferon kicked in when the dose was increased for a second time, I have since been advised to lower dose again but side effects still remain; increased body pain, upset stomach and general flu like symptoms. I take paracetamol which has minimal effect. Just wondered if anyone experiences the same and how they manage symptoms/side effects. Many thanks.