MPN Voice
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Newly diagnosed and scared

Hi just been diagnosed yesterday with PV/ET and I am very scared and hoping for any advice and wisdom from you. I am a 41yr old female and diagnosed following a routine NHS 40+ health check, I am symptom free at present just a bit of tingly hands.

I have been having some ongoing investigations for a few months now and my recent blood test confirmed I was JAK-2 positive and have very high platelets and raised RBC and WBC. I have been started on hydroxyurea and Alloprinolol for prevention of gout for the 1st month. My haematology consultant has decided against venesection as my platelets are too raised and this would rise them further.

The scary thing is I have never heard of these conditions and words like blood cancer and chemotherapy drugs are frightening me. I am not used to taking medication so I am struggling a bit. I am sure this is normal. The difficulty I have is I am the fittest I have ever been losing weight and started running to keep fit. So just a bit of a kick in the teeth.

On positive days I am thankful that my condition has been diagnosed so it can be managed, as undiagnosed could have caused something so much worse. Any advice would be welcome on your experiences of this disease, medication and more importantly when and how to tell my family, I was going to leave it until after Christmas as I know they will worry.

Sorry for the long post but obviously a very anxious time for me. Look forward to hearing from you.

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Hi, welcome to the forum. I was diagnosed with ET Jak2 + in Sept. My only symptoms were tingly hands and feet.

Don't be scared, it's a shock but prognosis good with management and we get regular monitoring- the NHS is brilliant. I told my siblings and hubby and kids (grown up) straight away and my elderly mother knows I have a rare blood disorder but haven't mentioned blood cancer or she'd really worry.

Hydroxy is brilliant, after initial side effects all good and I regard it positively as it stops us getting strokes etc.

It just takes time to adjust, like you I had never been on any medication or any health problems. It's been a bit stressful juggling work and appointments but my work colleagues have been brilliant.

This forum is really good for any queries.

Take care and enjoy your Xmas (alcohol is allowed with Hydroxy!)

Suzy

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Thank you Suzy for your support can I just ask what initial side effects you suffered with hydroxy when first starting and how long they lasted for.

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I felt spaced out for two weeks, first week was worst. Affected memory and concentration- brain fog, I think it is called. Then all fine, no more symptoms, wouldn't know I'm on it.

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"Affected memory and concentration- brain fog, I think it is called."

Giggling. " I think..." brain fog. Tee hee ...... Wait. What was I giggling at?

It truly does seem to be worse without the tons of water. I'm attempting to train my self to take a drink of water every time I forget something.

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It’s a bit of a shocker I know but try not to focus on the ‘cancer’ bit. There is some debate over whether this dreaded word appropriate!

Bottom line is it progresses very slowly and as many here will testify, you should be able to lead a normal life of good quality. I have PV/ET and in great shape, bit of itching and cramps but nothing concerning. I wonder whether this is partly down to exercising and trying to eat anti inflammatory diet which is extremely healthy even if it doesn’t work! There is an anti inflame MPN trial going on at the moment so clearly someone sensible thinks it could be useful.

And above all, you are young and plenty of time on your side. I think general wisdom amongst the experts is that there will be cure for disease progression within next five years. At the moment they can slow down progress and alleviate symptoms. I suspect will take longer for an outright cure but stopping progression is the important bit.

There have been major MPN medical advances over last 10 - 15 years and increasing exponentially. Just stay fit and positive.

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Hi Jen I’m 46 and was diagnosed with PV last year although initially shocked I’m now comfortable with my condition

Just keep doing what you’re doing keeping fit and eating healthy. I just wonder given your age whether Interferon might be worth looking into. Best of luck. Jason.

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Thanks for the reply can I ask why you feel interferon might be better? What I remember from what the doctor this had lots of side effects and is it an injection? Good to know your thoughts.

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Hi Jen I think if you asked 3 different haematologist for a treatment plan for yourself you’d get 3 different answers. You have to be your own patient advocate seeing an MPN specialist is very important. Best of luck. Jason.

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Hi Jen, welcome to this forum - joining it and looking for information on the MPN Voice website were the best things I could have done for my PV. There are a lot of people on here who really do understand what you are going through and will be able to help your family understand also.

Yes both ET and PV are classed as blood cancers but they are not in the same league as breast, bowel cancer, etc. They were once described to me as football leagues; top of the league would be breast, bowel, aggressive cancers and away down at the bottom are ET and PV so please don’t panic on hearing the C word. There are many ET and PV patients on this forum who have been around for many years. As long as your blood counts are monitored and kept under control, we can look forward to a long and happy life.

Some of the symptoms, such as fatigue, are harder to cope with but drink plenty of water, eat a healthy diet but have treats, you deserve them. Exercise when you can but listen to your body if it needs a rest. You will still be able to run, everyone will tell you that they feel better after exercise.

If you live in the UK, it is very worthwhile attending one of the forums which Maz our editor organises. There are separate groups for each MPN and also a group for families which helped my hubby a lot. Before that he buried his head in the sand.

Above all, keep in touch and please don’t panic, we are all here for you and each other.

Kindest regards Aime xx😺😺

PS Maz can also send out leaflets to you if you contact her on this forum or through the MPN website. They can be used to help your family understand what you’ve got.

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HI Jen

Welcome to the forum. I can totally understand this is a very scary time for you. I was diagnosed with ET in 2012 aged 51 following portal vein thrombosis. I was very frightened and worried at first esp when blood cancer was mentioned but the more I understood about what I had the better I as able to deal with it. This forum and info on MPN voice website that Aime refers to really helped. I have been on Hydroxy (am lucky I only take 500mg twice a week) and baby aspirin for some time and my platelets have been lowered and kept within normal range for some time now. It really helped me as I Had quite a few symptoms, bad headaches and chronic fatigue being the worst,before diagnosis. I have not had any problems with it and still work full time and enjoy life. I know we are all different though and different treatments are available. I would speak to your haematologist when you see them and ask about all the options available and satisfy yourself that suggested treatment best for you. Telling family and people is hard but once I understood my condition I was able to tell people and reassure them that it was not as bad as it sounded!! Though I understand you wanting to wait until after Christmas. Remember though you need support too don't bear it all alone. I would also say don't be afraid to ask questions, lots of questions of both your medical professional and this forum. I know I worried about being a pain!!!

Finally (Sorry if I have gone on...) try and have a good Christmas and take time to relax. Best Wishes Lizx

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" I am the fittest I have ever been losing weight and started running to keep fit. "

That is how you will be Jen76 nothing has changed.

It is a shock, it shakes who you think you are, you have a new label, but it is no big deal if you don't let it be.

You will get used to the tablets, blood tests-nothing to them! Side effects like itching and mouth ulcers go away completely after a while.

Stay sensibly hydrated, look after yourself, live life to the full because you have had this reminder that no-one lives forever, but still save for your old age, because you will get there.

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Hi Borage, I was interested to read that mouth ulcers eventually go away. Can anyone else vouch for that. My dose wS increased to1500 on Saturday and Sunday, 1000mg Monday to Friday. Initially I had lots of mouth ulcers. I still get them. They are very minor. Your post suggests they will eventually cease. I’d like other people’s views please. Dare I hope I’ll soon be ulcer free!

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Hi wyebird, I used alcohol free listerine mouthwash, and avoided getting dehydrated. I was given some sugar free pastilles designed for cancer patients with sore mouths by a medicines rep, (the dear woman filled a carrier bag when I told her what they were for) and after about two years I had stopped getting mouth ulcers anyway.

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Thankyou

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Hi Jen, I am the same age as you and was diagnosed last year. I completely understand your feelings, it is scary in the beginning and there is so much information to deal with. I just want to offer some encouragement, trust me it will get easier after a while. One year after my diagnosis I feel so much better and more used to this new situation, which is not that different from my life before. I'm on aspirin and interferon, which has helped a lot. This forum is great, it is full of people who can offer advice and support when you need it.

Best wishes, Cecilie

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Thank you very much for your reply how do you get on with interferon? Is it a oral tablet? Any side effects? Thanks for the encouragement.

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I’m on Peg-interferon. It’s an injection, I give myself, once a week. Many haematologists quote the symptoms hepatitis patients got. These patients were on a far higher dose. My symptoms were less than on HU. My main issue is with mouth ulcers.

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It's injections, and it's working well for me. The side effects are not too bad, only noticeable for the first few weeks. My platelets are back within normal range.

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Can I ask did you choose interferon over hydroxy. Concerns me with potential risk of hydroxy long term. Sorry to ask but a question I can put to my haematologist in 2 was who seemed to be against interferon due to side effects. Look forward to hearing from you I appreciate everybody's condition is individual.

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Interferon was the first choice because of my age, so I didn't really have to choose as I just followed the heamatologist's advice. I'm happy with interferon especially since I expect to be taking it for a long time. I'm on peg interferon, which is slow release and the side effects are not bad at all.

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Hi there, I really don’t think I can add much to what has already been said.. but I just wanted to say I felt exactly as you did now earlier on in the year when I was diagnosed with PV at 39, I was absolutely terrified having a very young family and that word cancer brings all sorts of crazy thoughts into your head! I can honestly say though that time is a great healer and you will feel better both mentally & physically. I now realise my life will carry on as normal as it was before, yes with regular hospital appointments,blood tests etc but I have my head round that now and you will too. I chose to tell my whole family straight away as we are all very close & I know not telling them would have hurt them more. However that is a totally personal decision that really only you can answer as you know your family. For me I really needed that extra support at the time too that I knew I would get from them. We are all here for each other so do use us all for information & support, I have found it invaluable. Best of luck with it all and enjoy your Christmas! X

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Thank you so much for your kind words. Do you mind me asking what treatment are you having?

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I’ve been really lucky so far to be existing on venesections for treatment and obviously aspirin. Fortunately as yet i haven’t had raised platelets so the venesections are sufficient currently to keep my HB & HCT under control. It is very tough at the beginning as you have to trust & follow what your haematologist tells you when you have no knowledge & that is why with these MPNs it is really important to do our own research to make sure we are happy with any treatment decisions.. the whole interferon v HU debate is a very difficult one & one which I follow very closely as I know one day my time will come! That’s why I find this forum so useful. X

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Welcome to the forum, there are a great group of people here. I can't add much to what others have said, I was diagnosed with PV 30 years ago when I was 29 and have been on hydroxy most of the time since. It is a shock at first, but research is discovering more all the time. Sounds like you already lead a healthy lifestyle which is bound to help. Remember we are all different and react differently, you will become your own expert in time.

good luck Fee

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Just wanted to say thank you to all of you for your encouraging replies. So glad I found this site.

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Hello Jen,

Let me tell you something. It's my wife who suffers, and I tend to do all the worrying for her !. She is a retired nurse and midwife and has type 2 diabetes. She was diagnosed about 3 months ago, and had no symptoms. She was helping out with a medical trial, and the platelets were found to be raised, so she went to pharmacology (NHS), and the Dr was very supportive. She is on Hydroxy, and app art from some initial tiredness, no problems. She is on low dose aspirin as well. The first words of the Haematologist once diagnosed were, and I quote , 'You will need monitoring, but this condition is eminently manageable', so he was very positive. That's great news, and developments in treatments are happening all the time. (Sorry for my typo error above, its not pharmacology, but haematology!. My PC is not letting me go back to change it )

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Tell your family when it feels right for you as you know them best.

On a practical note- if you have critical Illness cover on your insurances put in a claim. Some are turned down initially but there are helpful old posts on here which will advise how to respond.

If you work speak with your union and/or line manager and advise them as fatigue may affect you at work and they have to make reasonable adjustments for you.

Complete an exemption to NHS prescription charges form as all prescriptions are now free for you, not just those related to ET/PV.

There are old posts on here regarding suggested holiday insurance companies to use as you have to advise them of your illness. Personally I am covered by my union membership block policy which covers all illnesses without additional charge.

Can’t think of much more at the minute.

Gerard

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Hi Jen76,

Know exactly how you are feeling at the moment,i was diagnosed with ETjak2 positive in March this year and i just fell to pieces i had gone to hospital alone my husband is on dialysis and it was one of his treatment days and not knowing what high platelets meant i had'nt a clue what it all meant, although i am a great deal older than yourself what a shock it was and i must say i behaved as though i had 2 mins to live cleaned the house from top to bottom got all the personel papers in order a complete basket case.....its a shock to your system i am on hydroxycarbamide and aspirin 1 of each per day and drink plenty of water and so far no side effects.Keep your chin up this forum will help you no end everyone is friendly and so helpful and Maz will be able to give you any information you need Hope you have a lovely Xmas..Violet x

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Hi Violetta, my son is on dyalsis and I have PV et, just thought I would say hello , not many in our situation I suspect.

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Hello Angelinagaffer,it isn't easy with a loved one on dialysis you are the first person that i know off in the same position as myself

thank goodness for this website.Violet..x

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Hi Jen, I was also diagnosed with PV with high platelets (1.5 million!) in 2014, just when turning 50. After 2 years on Pegasys interferon my bloods normalised 😊. I feel good and lead a normal life working full time in a demanding job. Pegasys is administered by injection, first weekly, now every two weeks for me. It is a tiny needle but I still use an anaesthetic cream on the injection site to make it 100% pain free! No side effects at all with my current dose. The side effects most cite relate to the much higher doses of patients using it to treat hepatitis. Unlike HU it is not a chemo drug, and it can lead to remission in a small number of cases. Of course, it does not work for everyone and those prone to depression can see it aggravated. But for me it has been a life saver. I would discuss it with your haemo and ask for a second opinion with an MPN expert. Best of luck, Susana x

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My sympathy, but welcome to this brilliant forum and MPN voice in general. I know it is a shock -but I think that is because we dont know what we're dealing with when first diagnosed and I can understand you wanting to get your head round it first before sharing the news. I'm 66yr, diagnosed 18months ago -with no symptoms. I had just retired and was getting myself very fit.

After a few venesections whilst the PV was diagnosed, I went onto hydroxy. allupurinol (just for a few weeks) and asprin. I have had no side effects from the medication -the doseage had to be tweated over about a year, but I continue to keep myself fit and eat a healthy diet. My main change has been to increase my water intake -following advice on this forum.

On the positive side, with an MPN your health gets monitored regularly and I suppose it does focus the mind on a healthy lifestyle.

Good luck with the hydroxy/interferon decision -it's not a once only decision, I was told I could change when I saw how I was getting on.

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Hi Jen

Welcome to the forum. I can really relate to your feelings of being scared. Please be gentle with yourself amid the confusion of trying to take it all in. It is now two years since my diagnosis. Like Violet, I went into panic mode, ........steady on there, I did not clean the whole house but did sort out my wardrobe and had crazy stuff flying around in my head like would people recognize me when bald. I felt like my days were numbered and my quality of life would go downhill. Here I am, doing fine and little has changed. I take hydroxy on 4 days a week, aspirin everyday and have a venesection every 8 weeks. Life is good. This forum is fantastic, please feel free to voice any concerns or questions as there are answers and helpful hints.

Warm wishes

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This forum has been the most helpful source of information, support, and comfort on tough days. I'm in the middle of my second month of Hydroxyurea. Try to remind yourself that you are going through the process of wrapping your head around the fact that the rest of your long life is going to be different than it was before diagnosis. I feel like I've been going through the stages of grieving.

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His Jen I was diagnosed with PV 7 years ago now and am Jak2 negative. This forum is great and gives you so much good advice. I didn't realise it was a blood cancer until I joined this forum as it was never discussed with my consultant. I changed consultants after doing my own research and have never looked back since. Stay positive and as everyone else states drink plenty of water and excersise as much as you can without overdoing it. X'

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Hi Jen, welcome to our forum, as you can see it is a very welcoming, supportive and informative forum, I hope it is helping you. We all understand how scared you are feeling at the moment, we have all be there, but as you can see, we have all been living with our MPNs for many years and are doing ok, so do as the lovely people have suggested, read as much as you can, our website mpnvoice.org.uk is full of very good information, including videos and stories from patients and experts, so have a look. If you do want any of the information booklets email me at maz.cd@mpnvoice.org.uk with your address. Best wishes, Maz

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Hi Jen,

I have just had my 70th birthday after 19 years on hydroxycarbanide to cope with polycythaemia vera. Mine first came to light after giving blood. I never had any symptoms other than the itches after a hot shower. I have moved up the scale as my pv has become myelofibrosis but thats another story. I never realised that I had a cancer until I was 3 or 4 years into my treatment. I had no symptoms to speak of and continued working as an operational fireman until I retired 5 years ago. We are all different and are affected in differing ways but with regard to telling loved ones, you have a cancer which can be treated and there is a lot of research going on to improve our lot. To sum up, don't be afraid, there a lot of us carrying on normal lives with faith in our doctors and researchers. Keep smiling and taking the meds!

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Oh feel your pain.

I hope after reviewing this excellent site you will see a more positive outlook.

I find humour is an excellent antidote.

Let the team support you and try to keep well.

Keep in touch.

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You have found a brilliant site. Try not to worry too much, it is not that bad, sounds bad but as long as we manage ourselves well , life and living is not a problem, you will have many days you will forget you have ET and PV. And there will be days you will feel like s..t but it passes. Taking the chemo is scary at first but you will feel so much better, it won't be a problem.Your still young so not a lot will change but sport wise don't push yourself, I have active days and not so active days and non active days. I struggled at first because I loved being active , I am more able to sit and am beginning to find other ways to amuse my energy...... Take care , drink lots of water, salads , I eat lots of pineapple , we have to become anaemic so becareful with iron filled foods, if you eat meat eat cheese, if you have vitamin C, orange juice, etc, don't eat meat that day, vitamin C speeds up the production of iron. And there is light at the end of the tunnel.... In Australia they have discovered a drug that acts as an inhibitor to the Jak2 mutation but do not have enough research at the moment to prescribe , so for us that is good news. Fingers crossedxxx

Best wishes Angela

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Really helpful advice Angela thanks

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