Polycthamenia jak2

[tracey13]

Hiya

Can anyone with this blood disorder recommended anything you can take for the tiredness!

My husband is struggling with fatigue, he drinks a borocca orange drink it's OK for a short while but by mid afternoon he's so tired.

Many thanks

[Paul42]

Hi, Its a common problem....

Plenty of water might help. One of the things that is really supposed to help is plenty of excercise too. I find morning excercise works best for me and does seem to set me up for the day. Its hard though when your so tired to get yourself going.

Not convinced with stuff like berrocca, fresh veg/fruit smoothies might be a longer lasting benefit. Things like bananas are slow release thats why you see tennis players eating them.

Paul

[tracey13 in reply to Paul42]

Thank Paul for your reply.

My husband does 6.30am to 6.30 pm so he really struggles to get exercise in. He tries to get out at a weekend on his race bike. He says exercise does help him.

We just looking for some answers. It's all so daunting at the minute for us.

Thanks again

[Paul42 in reply to tracey13]

Hi, i managed to get prescribed ruxolitinib this year and have felt a lot better, i know its hard to get but worth asking.

12 hours a day is alot to work, maybe he could speak to his employers about work patterns. I know thats not easy either but the best of us would struggle with that.

Paul

[tracey13 in reply to Paul42]

It would be nice for him to reduce his hours but he's a quality manager on a project.

They suppose to work 11 days and 3 off but there's no way he could cope with this.

Thanks for your advice

[ainslie in reply to Paul42]

Paul

How did you manage to get Ruxo and which MPN do you have

Kye PV 2010

[Paul42 in reply to ainslie]

Hi

My consultant contacted Prof Harrison to see if she thought it would help, my spleen is considered 'massive' as 23.5 cm and i was suffering from bug after bug and was very fatigued so they thought it might help.

I have PV but do have some fibrosis, my original diagnosis was actually MF but then because i didnt have enough fibrosis for MF and was finding my RBC shoot up if i took Iron it was changed to PV.

My spleen hasnt shrunk, but i am feeling so much better since i started the Rux.

Paul

[lizzieET in reply to tracey13]

I have dramatically cut my sugar intake - obvious stuff like cake & biscuits & less obvious stuff like sensible amount of fruit rather than filling up on grapes & bananas which are really sugary. My diet is pretty much savoury now, and as little processed food as possible.

Daily exercise even a good walk helps & both the above have increased my quality of night time sleep & improved daytime fatigue.

Worth a try. I hope your husband feels brighter soon.

Liz

[tracey13 in reply to lizzieET]

HI liz,

My husband is cutting the sugar out of his diet too. He looks at the sugar content when he's buying food.

Before he was diagnosed he went through terrible anger moments when he was hungry it was terrible he used to shake terrible.

He now eats 3 meals a day at set times this has helped his blood sugars loads better.

He's upped his water intake too!

Tracey

[Aime]

Hi Tracey, it is very daunting, worrying, etc for a start. I have PV jak2 negative diagnosed 2012 and this forum has been such a saviour. There are lots of people who understand exactly what you and your hubby are going through because it affects the whole family. Some people have had it for many years and are still here so it's not always as ominous as it sounds. Your husband should be able to get drugs for his condition free (I think I am right in saying that) if you stay in England, in Scotland our prescriptions are free anyway. You can also claim on critical illness policies too.

The fatigue, I think, is the hardest thing for me to cope with so every sympathy to you both. Drinking plenty of water does help a bit, so does exercise if you can push through the fatigue - sometimes I can push through it, other times not. I do also find that bananas, pasta and other fruits do help with increasing energy levels a bit but when my blood is really thick, taking it off is the only answer. However everyone is different and it's good to research and experiment so you and your hubby have some control over and understand your disease better. MPD Voice website is great and so is this forum, both are carefully monitored by Maz our "leader" and she also gets medical info and answers from professor Harrison at Guys.

Keep posting and reading on this forum. You and your hubby will get so much support from some wonderful people who understand exactly what you are both going through. Best wishes Aimex😺

[tracey13 in reply to Aime]

Thanks aime

I just wish my husband didn't work the long hours as he's got no time for the gym after doing 12 hours a day.

He's got the jak2 positive!

He's been fine no major problems he's happy to continue with the venesection but his platelets are creeping up so that's a worry.

He works away from home so it's hard getting to appointments he's OK with the monthly hospital visits.

When he was first diagnosed we were so frightened didn't know what to expect. To to be honest nothing has changed in our life he's just doing what he used to do like I mentioned it's just the tiredness.

I love this Web page it's so helpful.

I've got a blood disorder too we make a right pair. I'm on warfrin for life now.

Thanks Aime.

[Aime in reply to tracey13]

As others have said 12 hours is a long day for someone in perfect health. Tell him not to push himself too hard, it's finding a happy medium. When my blood is getting thicker I find I sometimes have to work a bit less and have a rest in the afternoon. If I don't I struggle to get through the next day. He may get enough exercise at work.

Take care, best wishes Aime x😺

[tracey13 in reply to Aime]

HI Aime,

My husband feels great after a venesection he's due another one on Friday.

Are you on medication for pv.

He's going to have a chat with his consultant next month about his platelets.

We don't know what level of platelets are at danger levels his are currently 737.

I know you said your jak 2 negative my husbands is positive.

Really we shouldn't worry as nothings changed in 2.5 years since he was diagnosed.

Thanks for your reply

Take care x

[Aime in reply to tracey13]

Hi no I'm not on medication yet but platelets are rising too so will just have to wait and see. I know it's easier said than done but try not to worry about things which may not happen, that's what I try to do, don't succeed all the time but I think my attitude towards my PV is a lot better than it was. Take care Aime x😺 ps you will find answers about platelet levels on MPD voice where you can also ask the experts.

[tracey13 in reply to Aime]

Your so right about not worrying my husband hadn't got the time to think about it.

Im doing the research for him.

The nurses on the chemo ward where he goes for his venesection says lots of patients take hydroxy and they are fine. As it's a smaller dosage for pv patients than cancer patients.

Thanks for your replies it means a lot.

X

[Twinkly]

To help we must ask a few questions ,the first one ,what medication is he being prescribed ,and the dose each day ? how old is he ? How long has he felt not well? You see ,to start to suggest those things we have tried ,we need to begin at the beginning ..let me offer my best advice ,it was a book I was given by a good friend when I was very first diagnosed with my mpn .disorder , ,,,,The PH Miracle..diet .by Robert Young ..and his wife Shelley.. I read it and changed my diet and my life ..then I read The China study ....T.Colin.Campbell... These 2 books have helped me to question and to answer ,my Fatigue .my weight .and my lifestyle ...they are easy to get from Internet .just google search them ...hope this is of help ...keep in touch. , twinkly .xx

[tracey13 in reply to Twinkly]

HI,

At present my husband is only taking a daily asprins and having monthly venesections.

Seeing his consultant next month to discuss going on hydroxy.

He's now 43 years old he doesn't feel unwell he's just very tired.

His iron levels are so low and his platelets are 737.

We will have a look for these books everything helps.

Thanks

[blulou in reply to tracey13]

Over here in the colonies we have an excellent iron supplement - Floradix. Can't attest to it actually having ten flowers, but it does help a bit with anemia. I also try to roast and consume some red beets every week; partly, because they taste so good.

Is there any way he could get his head down and feet up for 30 minutes after his lunch?

Best of luck in any case.

[lawhill]

Hi Tracey, it's all a bit daunting, but the specialist will provide good advice and you can both revisit your situation. I had P V for 20 years, and now advanced Myelofibrosis. On ruxolitinib here in Australia, and that has given me a better quality of life. One thing is for sure, your husband's work life balance is not helping his fatigue. It's always difficult to look at our lifestyle, but it's essential. I had to do the same thing when I was a bit younger than your husband. Things will settle down once the specialist has determined the right course of action for your hubby. However, he needs more rest by the sound of it? Good luck with the appointment....Jeanette

[tracey13 in reply to lawhill]

HI jeanette,

Thanks for your reply.

My husband is doing quite well he tries not to think about his pv as he's so busy at work.

The consultant mentioned going on hydroxy think he's worried about any side effects etc.

On a weekend he's fine on a morning by mid afternoon he's exhausted.

Maybe after the contract he's on he maybe able to change his hours and slow down.

He's a project quality manager in the engineering industry.

He's had this pv for 2.5 years now and he's been fine with the venesection.

Last year he went from April to September without a venesection we thought the jak 2 might of slowed down but since December last year he's having monthly venesection.

The consultant is concerned about his platelets as they are now 737.

Many thanks

Tracey

[lawhill in reply to tracey13]

Hi Tracey, yes, I can understand that the thought of going on to hydroxy can be a worry. I was on it for over 20 years and, whilst we would rather not have it, it did keep me alive, working and managing family life until three years ago. I had to go on to hydroxyurea almost immediately when I was diagnosed in 1992. It lowered the platelets, for sure, and I also took (and still take) low dose aspirin. We've come a long way in the last ten years, and the introduction of ruxolitinib has helped many of us. It can be a challenge when we recognise that our condition has changed and needs to be reassessed. But it is a change only. We all get used to it and life improves again. I wish you both well. All the best. Jeanette

[tracey13 in reply to lawhill]

HI

So what is the difference between hydroxy and ruxolitinib?

Is one better than the other or is it down to budget?

I'm so glad I've joined this site it's so helpful speaking to all the people with mpds

My husband was working in Kazakhstan for 3 years and on his yearly medicals there was an increase with his red blood cells.

He's been very lucky this has been picked up.

Tracey

[lawhill in reply to tracey13]

Hi again, hydroxyurea has been, and still is, widely used for PV. It's considered the best available therapy, and its purpose is to reduce the excess blood cells that are produced in the bone marrow. 24 years ago, I was told that it was rare to have the condition change to leukaemia, and so far this has not happened to me! As I say, I was on the drug for just over 20 years and carried on with a normal life. Just need to be sensible about what you eat and drink etc. Love your body and it will love you back 😇 💕 😉 Seriously, things settle down and life will go on as usual. I was put on ruxolitinib, because hydroxyurea had stopped working, and I was too ill to have a bone marrow transplant. There are specific criteria to address for getting ruxolitinib on a compassionate access program (I'm in Australia) and I qualified. That was over two years ago, and it has helped me enormously with symptoms that were making life very difficult indeed. I am a long way down the track from your husband's situation, and I honestly think you can feel encouraged at the progress that's been made over the years. I'm sure your specialist will look after your husband, and when you see him / her, ask as many questions as you like. They are the specialists, after all! Take care...Jeanette

[ainslie in reply to tracey13]

Most of the MPN experts do not think its necessary to treat platelets under 1 million , so that in itself is not a reason to start meds

[Hidden]

Hi

Strange that you say about Hydroxy that patients with PV take it but at a lower dose than someone with cancer. You do realise that PV is a cancer don't you?

[tracey13 in reply to Hidden]

Hiya we were told pv is a primary cancer and can lead to lukeamenia if it's not managed.

Is this information correct?

To be honest we've stopped reading up on pv as it scared us both.

I rang out insurance up for our mortgage protection and they said they don't pay out for pv as it's not a malignant cancer.

Tracey

Many thanks

[Mazcd Partner MPNVoice in reply to tracey13]

Hi Tracey, MPNs are classified as a blood cancer as the word 'neoplasm' (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms), and because PV, ET and MF are characterized by uncontrolled cell growth they are considered by most haematologists and cancer organizations as blood cancers. You must bear in mind that the disease may remain stable or gradually progress over time and your husband may not experience many of the symptoms or outcomes that you read about or if he does it may not be for many years and many people with PV or ET live normal lives for years at a time and very importantly, it is very rare that it can develop into MF or leukaemia. Maz

[tracey13 in reply to Mazcd]

Thank you so much for this information I'm now starting to understand about pv.

I read up on it a few years ago and frightened myself.

So am I right in what I've read that pv can be managed and life expectancy is normal. I understand there can be complications along the way.

I bet there's a lot of people out there who've got this and are unaware.

I'm on warfrin now for life after having my third blood clot. I was worried about this but now I just think I'd rather be safe than sorry.

Life has been like a roller coaster for us both we are both in our early 40s never smoked or been big drinkers.

I will send you my email address as required so you can send me the information on pv.

Once again thank you so much for your help and advice I really appreciate it.

Tracey

[Hidden in reply to tracey13]

What Maz has stated is your response. However I would challenge the mortgage protection insurance if you have critical illness cover as many on here have been paid out.

As it is a cancer make sure you get a medical expenses exemption form so that you don't pay prescription charges.

From your earlier Q I take Hydroxy 2 per day and 3 at weekends and take them in the evening to stop fatigue

[tracey13 in reply to Hidden]

I think the critical illness won't pay out as yet as my husband isn't on medication. He's only taking asprin daily.

Maybe when he starts the hydroxy then this may change as he will be on cancer treatment.

I will look into this

Thank you

[Aime in reply to tracey13]

Hi legal and general paid out on my critical illness policy and I am not on meds yet either. Keep persisting! X Aime 😺

[Paul42 in reply to Aime]

Hi

they paid out on mine too

Paul

[tracey13 in reply to Paul42]

I will ring them back up as we've got critic illness cover!

[tracey13 in reply to Aime]

HI Aime

Just looking through our critical illness policy

It states non invasive cancer in situ are not covered

It only covers cancer that is malignant when abnormal cells invade or damage surrounding tissue.

So I'm guessing we not cover by the critical illness.

Tracey

[Paul42 in reply to tracey13]

Hi

are you in the UK? Im sure the ABI issued some guidance on this to say it should be paid regardless of which insurer it is.

Someone else may know more about this

Paul

[tracey13 in reply to Paul42]

HI Paul

Yes we are in the UK.

I'm just reading our policy.

I'm going to give them another ring as if my husband is going on hydroxy then he's having a cancer treatment..

There's far too many loop holes with insurances.

[Aime in reply to tracey13]

Hi Tracy like Paul says I think you should keep nagging. Google ABI polycythemia and you should be able to find the recommendations which you can then quote to your insurance company.x Aime 😺

[tracey13 in reply to Aime]

Hiya Aime

I've just rang Scottish provident about our critical illness. I rang them in Jan 2014 they told me I wasn't

Covered.

I'm now getting a phone call on Thursday off an assessor to fill out the forms, but the lady did say some blood cancers aren't covered.

They asked me if it's an invasive cancer but this I'm not sure about.

Fingers crossed.

Thanks aime

[tracey13 in reply to Aime]

HI Aime,

Do you have any tips on what I can quote. I've made a note of a few things but its sometimes key words or buzz words they look for.

Thanks for your guidance

Tracey

[Aime in reply to tracey13]

Hi Tracey, the association of British Insurers classed ET and PV as malignant cancers at the end of 2006. I tried the link to their website which someone gave me before and it's not working now. Will look for other ones and get back to or someone else might have a working link. Regards Aime x😺

[tracey13 in reply to Aime]

HI Aime,

Spoken to the insurance assessor today she said the Abi have added pv and ET to their critical illness cover.

She's filled the forms out for us and is sending a consent form out for my husband to sign then they can contact the consultant.

Fingers crossed they pay out. This will take a lot of pressure off my husband.

He really needs to go on hydroxy but is putting off due to working away as he will need regular blood tests.

Thanks aime

Tracey

[Aime in reply to tracey13]

Sounds promising, everything crossed for you.xAime 😺

[RobinBrum]

Fatigue comes and goes, I find. When I went onto Hydroxy, I was exhausted mid-day every day. Then it settled down. My dosage went up from 500 mg daily to 1000 two days a week, 500 the rest of the week, and I got even better. But you can't assume things will stay this way. Remember that part of this may simply be due to age and stress too. Good luck!

[Paul42]

Hi Tracey

Low iron levels will be contributing to fatigue, but thats the aim of venesections...less iron means less fuel to make red blood cells, so its a bit of a catch 22 situation.

I do understand that changing work patterns is not easy, but his employer does have a duty of care to ensure work patterns are not impacting his health, especially as he has a medical condition.

It is a difficult discussion to have though, so I would fully understand his reluctance to do so. I would say though there is a good chance his employer would be understanding and work with him to try and get a better pattern, I know when I told my employers they were very understanding, I can work at home anytime I choose which helps. I know thats not a solution that everyone can arrive at....

The only thing I would say is at some point something has to give, fatigue, low iron levels etc affect concentration and the last thing your husband or his employer would want is either your husband going off on sick for a sustained period, or being so run down that a mistake happens.

Its so hard and i have every sympathy, I dont know myself what I would do, I myself know i have been to work at times i should have taken time off, because you dont want to give the impression the illness affects your job. Its a lot easier for someone out the outside to say you need to speak to your employer than actually doing it.

Really hope things start to pick up. Sounds to me like some winter sun on a beach somewhere wouldnt go amiss

Paul

[tracey13 in reply to Paul42]

HI Paul,

My husband does manage his tiredness at work he's changed his diet and is drinking plenty of fluids.

It's more when he finishes work and sits down when the tiredness hits him.

He's never been off work with this pv he always feels great after a venesection.

He's having them monthly to get the haemocratic level down to 0.45 it was 0.49 the last twice he's been.

Think we ae both a bit anxious about him going on medication incase he feels poorly as he doesn't get paid sick pay.

Also working away from home makes it harder for him.

Does anyone know where this pv comes from or what causes this mpn.

Tracey

[Paul42 in reply to tracey13]

I think its one of those things....they are rare conditions, but like any other illness its not always easy to say why someone has contracted it.

I know with some cancers its easier to identify what may have caused it, like lung cancer etc...but I think it just has to go down as one of those things.

[sschram]

I also have PVC but I have lots of energy. take the low dose aspirin but I also take at least on clove of raw garlic with turmeric and cinnamon each morning. I put it into oatmeal or yogurt. If I cannot do this I take a garlic capsule. He might try this.

[tracey13 in reply to sschram]

Thanks for your tips. It's all worth a try.

Tracey