General help and guidance please, newly diagnosed

[Juliezcrosby]

Hi everyone. I have just recently been told I have PV. Haematology are contacting me on the 7th May but phone, so I’m unsure of what this call is going consist of . I’m unsure of what I need to be asking about when we do speak ? There seems so many parts to this condition and don’t know where to even start. It’s seems quite a minefield at the moment...... all advice and guidance is very gratefully received, many thanks 😊

[mhos61]

Hi and welcome.

There is a lot of information to digest when you’re first diagnosed, so don’t beat yourself up, we’ve all been there.

I have posted a link to the PV page on MPN Voice. This is an excellent site and will give you an overview of your condition. Take sometime to read it before your appointment, and this will probably help you to compile a list of questions. You will not understand everything at this stage unless you’re a medic!

You will be assessed for your thrombotic risk, as we all are. When your risk category is determined you will either be offered cytoreductive therapy and/or venesection alone.

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

[Juliezcrosby in reply to mhos61]

Thank you so much. I’ll read through this now and get a pen and paper 😊🙏🏻

[jillydabrat]

Hi Julie

I was diagnosed with PV in 2015, right after I got the all clear from breast cancer. The way I was told about my condition being a cancer was not good and I was terrified. I rushed home to Google it and became even more scared. Please don’t go to Dr Google. The information you find online is pretty much rubbish anyway. When I found this site it was a Godsend. I learnt everything I know from here because there are so many with the condition that will share their experiences and answer any questions.

When you go to your next appointment your haematologist will discuss your treatment plan. You may have to have a couple of courses if venesection to remove excess blood along with a drug course. Some people get away with aspirin but some have to have Hydroxycarbamide, which is an oral chemotherapy. Don’t be scared of that word either, it’s just a drug that helps with this condition.

Don’t be worried if you have read that you will not live a long life with this condition. It’s hogwash. People with this condition can expect to live a normal life time. This is the scary stories that you get from Dr Google.

As for the condition, well it affects people differently. It is perfectly normal to experience extreme tiredness. Just listen to your body. You may get itchiness in the shower, aching joints, dizziness and brain “fog”. All these symptoms you learn to live with and beside regular blood tests to see how your red blood cells are behaving, as well as other indicators, then your life will be normal.

Because this is a form of bone marrow/blood cancer you will never have to pay for prescriptions again.

If you take the time to read the posts on here you will make up your list of what to ask your consultant.

A number of people have had to reduce working hours because of the fatigue but, again, listen to your body.

Hope I have helped. Please, just don’t be scared. You will learn to live your life around the condition.

I would recommend looking it up on the Cancer UK site as well.

Take care

Jill

[Juliezcrosby in reply to jillydabrat]

Jill. Thank you so very much for the time you have taken for this reply. Honestly, thank you. Everyone on here has been fantastic. I’m taking everything onboard and reading a lot although I do have the brain fog so it’s a bit harder to concentrate but getting there. The speech but has come into play now lol what fun that is .... 🙈 when reading about the symptoms it’s made me feel relieved tbh as I though I was starting with dementia, diabetes, menopause all at the same time. The symptoms listed all making sense. My next step is how I relay this to my kids. Raised in a single parent family we are exceptionally close and even tho they range from 32-27 I’m finding it hard to know what to say them and how to not have them panic. My lad josh knows and that’s only down to us having a business together and is more of a logical “let’s look at this” mentality . My eldest son and my daughter will concentrate on the “C”word and completely freak out no matter what I say. We have lost a lot of very close family members over the years so I know that’s all they will think about. I don’t want them to worry even tho they will. Really sorry to go on. My husband is worrying and trying not to show it and as we don’t have any answers at the minute I don’t feel like I can talk to anyone without them freaking out.

[jillydabrat in reply to Juliezcrosby]

The best thing you can do Julie is get your husband and children to read nothing but this site. Any other site will scare them. Once they read the stories on here from people who live with this illness from day to day I am sure they will be reassured.

[Juliezcrosby in reply to jillydabrat]

Great advice thank you 😊

[Cja1956 in reply to Juliezcrosby]

I was diagnosed with Et Jak 2 in 2008. Back then, my hematologist called it a blood disorder. A few years later, I was googling it and found out it was reclassified as a cancer. At the time of my original diagnosis, my daughter was 17 and my son was away in college. I didn’t want to worry them since I had read that you can live a normal life span with ET. It wasn’t until they were much older and my ET had progressed to MF, that I told them it was cancer. I am happy now to have their support

[Mazcd Partner MPNVoice]

Hi Julie, welcome to our forum. It is very daunting when you are first diagnosed, there is such a lot of information to digest, just take your time to understand it all. As Mary said, there is a lot of information on our website that will help you, so do have a look.

It can be very hard to explain it to your family and friends, there is some info on our website that might help

mpnvoice.org.uk/living-with...

and once you have spoken to your children it might also help them to read some of the information on there so that they have a better understanding of PV.

Best wishes, Maz

[Juliezcrosby in reply to Mazcd]

This is great thank you will definitely do as this instructs 🙏🏻

[hunter5582]

Hello and welcome to the forum. Glad you found your way here. This is a great place to get support and learn more about MPNs from the perspective of MPNers.

I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. At age 65 I have live a good life and continue to do so. There are challenges to managing a MPN, but these challenges can be dealt with. Treatment options ore improving and there are some very promising options to come. The best way to deal with PV is to deal with it. Learn about the condition and the unique way it presents in your case. The advocate for what you believe to be in your best interests.

A very important first step is to identify a MPN Specialist with whom you can consult. Be aware that most hematologists do not have the KSAs to provide optimal care for MPNs due to their rarity. Find out what level of MPN expertise your local hematologist has and be sure to seek consultation with a MPN expert doc. Here is a list mpnforum.com/list-hem./ .

There is a lot to learn about PV, the driver and non-driver mutations, mutant allele burden, the role of systemic inflammation related to the JAK2 mutation, primary and secondary symptoms, and more. The good news is that you will have plenty of time to learn about all of this. Be very careful in interpreting the PV longevity studies if you look at them. They do not predict your actual outcome. These studies are predictions of large groups of people with PV, not an individual projection of your prognosis. The best plan is to expect to live a long life with some challenges along the way which you will find a way to manage.

All the best on this journey. Please stay in touch and let us know how it goes.

[Kiki64]

Hi Juliecrosby.

I also have PV and couldn’t give you any better advice and positivity than Jilly.

Please keep strong and be your own advocate .

Very best wishes

Kiki64 ☺️

[Juliezcrosby in reply to Kiki64]

Thank you and take care x