Hello from a newby!

[Jellybean129]

Hi all

Thought I’d introduce myself. I’ve read a lot of your posts and find you all a mine of information, caring, funny and very supportive. Having got my you-know-whats in a twist over what is to come, I do feel more reassured and ready to face things standing.

My abnormal platelet count was picked up at a routine IBS check - my consultant deserves a medal, having also picked up on my vitamin D deficiency a few years ago. He seems to have been the only doctor who has really studied my blood tests over the last 5 years or so, as the platelet count has been abnormal for at least that long. Needless to say, I now have an appointment in November at our local Macmillan centre (freaked me out when I saw that!) and have had more blood sent away for the usual MPN tests at Addenbrookes (another ‘moment’) for ET. On the form it said ‘thrombocytosis ?MPN’

I have been through the OMG I might have cancer wobble - not quite through it yet to be quite honest. It’s the waiting that is the hard thing at the moment. It’s difficult to switch off and ‘do something else’. I was diagnosed with Fibromyalgia 4 years ago (pains all over, brain fog, chronic back ache, fatigue etc) and also have Raynauld’s. I’m beginning to wonder if the Fibromyalgia symptoms are in fact MPN?

At this moment in time I feel totally out of control of my life - trying to come to terms with multiple complaints has been a rocky road, especially as I was so fit and healthy when I was younger (now in my 50’s). To then get a suggestion that another title will be added to the list makes me wonder what next.

Sorry for the moan - I’m sure you’re all used to it! I feel I can’t talk to the family about it yet as I haven’t got my own head round it.

Can I just say a big thank you to all of you who have posted. Your comments have made a big difference to the way I am now thinking about what the future may or may not serve up for me.

[mhos61]

Hi Jellybean129,

I wish you a very warm welcome to our forum. As you say, you've already noticed we are a supportive lot.

I have ET (jak2+) and this was also picked up on a routine blood test. The waiting for a diagnosis is the hardest part, so I totally understand your anxiety. It took about seven months from the first blood test for me to get a confirmed diagnosis. By then I had googled just about every available data possible on ET, so when the haematologist mentioned 'cancer' it didn't come as too much of a shock. Like you, I needed to absorb and understand my diagnosis before I shared it with my family other than my husband of course. The 'understanding' however is still an ongoing process.

I must say I found ET complex and still do to an extent. I was certainly left wth more questions than answers, such as what did jak2+ indicate and terms like 'allele burden' amongst other things. This is where this forum has been invaluable, you can ask questions and in some cases, Maz (forum administrator) has been able to get clarification from Professor Harrison, who is an MPN expert. You can't get much better than that!

You are right to question the fibromyalgia diagnosis, it may be just that - but equally, it could be related to the ET. It's certainly worth a discussion with your haematologist. I thought I had no ET related symptoms. I now know the burning pain I experienced in my foot at times was definitely related, as it cleared within a week of being on aspirin. Likewise, I did suffer some joint pain - but it had exacerbated considerably during this time. I had put that down to age! This did alleviate somewhat when I commenced on hydroxycarbamide.

As for the future, I personally take heart from the fact that this is a pretty much indolent 'cancer' If it is monitored and treated appropriately our life span is not much different to that of the general public.

Mary x

[Jellybean129 in reply to mhos61]

Thank you for your kind message Mary. It sounds like you have a level headed acceptance of the condition and your words are a real boost to me. Nobody likes stepping into such an unknown (how I perceived it before finding this forum) but now I feel I’m not alone. My husband, of course, knows the suspected diagnosis as he was at my appointment when it was mentioned. He is a sweetie but I can see he is struggling to move beyond the feeling of impending doom! Saying that, I know he’ll be by my side all the way.

Thanks again. Gill x

[Aime in reply to Jellybean129]

Hi Gill,

Welcome to the forum, you have received some super replies already and as you can see from them you and your husband are not alone.

I have PV and my hubby's reaction was to dismiss my symptoms as depression and bury his head in the sand and when I did get my PV diagnosis and told me not to get obsessed with it!

I asked him to come to a forum which Maz and her marvellous team organised and he joined the families group when he had a chat with other hubbies, etc and that made a huge difference to his attitude.

The forums are listed on the MPN Voice website along with a ton of trustworthy information.

You allowed to moan anytime you want to- we all need to and there is always someone who both understands and listens. Personally it took me about 9 months to get my head round my diagnosis. You then feel an acceptance plus some control over it as it ceases to take over your mind 24/7.

Keep in touch, kindest regards Aime xx😺😺

[Jellybean129 in reply to Aime]

Hi Aime. Thank you for sharing your hubby experience. We have a lot of sand round here so it may be a while until I find mine!!! Saying that, he’s very like me and needs time on his own to work things out. One of the Forums sounds a good idea - they sound really informative and I think we’d both benefit from meeting others in our situation.

I’ll definately keep in touch as all your kind comments are the best medicine at the moment.

Kindest regards, Gill x

[francesb]

Hi, you've done the best thing coming here and you'll learn lots and get lots of support. I totally agree with Mary, it may be cancer but the likelihood is a normal lifespan if it's controlled with treatment which I'm sure it will be. I refuse to let it take over my life and just make adjustments to deal with the fatigue eg I now go out to lunch rather than dinner! Good luck and don't hesitate to ask questions here. Best wishes Frances

[Jellybean129 in reply to francesb]

Thanks, Frances. I too struggle to do anything in the evening. I’ll just have to nag the husband to treat me to lunch, if I can drag him out of the workshop! Gill x

[piggie50]

Welcome Jellybean129,

Not much more I can add to what the others have said, which I fully endorse. Your husband will be ok as he gets better informed, it's not the death sentence we all think it is in the beginning. I have had PV for the last 12 years, diagnosed at age 51 and I really don't give it much thought. My life carries on as normal. Yes I get tired sometimes but I'm in my 60's so I probably would get tired anyway! I am forever grateful to my GP, I was taking a drug for rhumatoid arthritis which suppresses bone marrow so was having regular blood tests. She noticed that my red blood cells were increasing not decreasing and so referred me to haematology. I am so glad it was discovered before I suffered a stroke or blood clot.

Keep in touch and let us know how you go.

Best wishes

Judy x

[Jellybean129 in reply to piggie50]

Hi Judy and thanks for the welcome. You sound like you have a good GP - Hopefully mine will step up if and when needed. I presume most MPN care is directly controlled by your haematologist?

I’m so glad to hear you aren’t letting your PV rule your life. That seems to be the main theme in a lot of people’s posts here. What a strong bunch of people!

Best wishes

Gill x

[piggie50 in reply to Jellybean129]

Hi Gill,

Yes, my PV care is dealt with by the heamatologist. I have an appointment every 12 weeks where my Hydroxy is adjusted if needed and a venesection if my heamatocrit is over .45. Although that only happens about once per year now. Two of my heams have now retired and my current one joked " well you can't be that bad, you've seen off two haematologists while you've had the PV".

If we have to get a cancer a MPN is one of the better ones to have. Read all you can from reputable sources and things will soon settle down and it will all become just a way of life for you.

Best wishes

Judy X

[Jellybean129 in reply to piggie50]

Hi Judy

It sounds like the care for someone with a MPN is closely monitored which is a comfort. I’ll certainly find out all I can about it as it seems to me a lot of the balance achieved comes from oneself. As they say on Startrek “live long and prosper” .... and drink lots of water !

Gill x

[amhann]

Hi jellybean - ditto to your other replies, I was diagnosed ET Jak2+ 2 years ago and I have learned more about MPNs here than anything from my GP or the hospital.

I had many ongoing issues all put down to other things, vision problems - migraine, joint pain + fatigue - menopause (ha for 8 years!!!?!), cold hands blue fingers tingles - circulation, so for me it was such a relief to finally get diagnosed (not a neurotic woman imagining things - who knew?!!). Even so it took some time to get my head round it ( the fact a tiny aspirin sorted out the various symptoms I have to say was astonishing).

We may not be able to be 'mended' but we can definitely be 'managed' so please try not to freak at the 'c' word or where you may be treated if you are diagnosed.

I do hope you get some answers soon.

Best wishes Anne-Marie.

[Jellybean129]

Thanks for your kind message Anne-Marie. In a way it would be nice to have all my symptoms explained - 5 years of “we’re not sure ..... let’s do another test” gets to you after a while. I’ve even had “perhaps it’s in your head”.

Thank you for the reassurance. It’s so good to hear the positivity from those who are living the life of MPN.

Gill x

[Mazcd Partner MPNVoice]

Hi Gill, welcome to our forum, not really much I can add to the wonderful responses you have had, except to say I am pleased that you have found us and that we can help you. Read as much as you can on our website mpnvoice.org.uk and if it will help you and your husband I can send you some of our information booklets, and it might also help you to have a buddy to talk to, a buddy is someone who has the same MPN and takes the same medication as you, they will have had their MPN for over 2 years so will have a really good understanding of how it can affect your daily life and will have found ways to cope, if you think this will help then please email me at [e-mail]. Best wishes, Maz

[Jellybean129 in reply to Mazcd]

Hi Maz

Thank you for all the information. The buddy scheme sounds a great idea as I can see a lot of questions arising in the future -all of which I imagine a lot of people here have had answered either by experience or by someone who has already been through it. I’ll email you as the booklets sound a good way of educating both me and my husband.

I must say, this Forum is such a breath of fresh air - the honesty and support is next to none and I feel I’m not alone.

Best wishes

Gill x

[Phelpsy]

Hi Gill , Welcome aboard .

All the feelings your going through are completely normal .

I was Diagnosed with ET jak 2 +

Over 4 years now after a Tia

I can honestly say the wonderful people on this forum

Helped me so much I will always be so grateful to them , X

As Aime suggests the Forums are a great way to introduce your Husband/family To the MPN world , I’m visiting the Newcastle forum on Friday

My husband also learnt so much from them , he now knows more about me than I do 😜

I hope your results are back soon

Take care

Pam x

[Jellybean129 in reply to Phelpsy]

Hi Pam

It’s so good to hear from so many who are so encouraging and positive about their lives. I feel so glad to have found MPN Voice and all you wonderful people!

Thank you so much for taking the time to reply. Your advice for my husband sounds great as I really don’t know how I would be able to explain to him the ins and outs of living with this.

I’m already grateful and I’ve barely started!

Thanks again.

Gill x