Daisy-May

[Daisy-May]

Just freaked out on Google saying 5 years life expectancy for Myeloproliferative disorder.. Wondering if anyone has any positive words...

[Magentas]

I only freak out when I dwell on it now or if I’m having ultra debilitating fatigue. I was diagnosed with MF in April. You’ll get that very unhelpful “everyone is different” thing. But for sure you can’t trust google’s median life expectancy. My haem said 50% of people at my stage (MF2) are alive in 8yrs. Sorry, not very helpful I know. Just really look after yourself with exercise and diet and for sure you could be around for another 10 years at least, it is most certainly possible!!

It’s horrible living with the uncertainty so do your best to just enjoy life and try not to dwell.

All the best to you Daisy-May.

[WeylandYutani in reply to Magentas]

Totally agree Magentas, the median given by google tells you nothing about your personal diagnosis. It heavily depends on present mutations, speed of progression (...).

Someone in my mpn support group was diagnosed MF some years ago at the age of about 35 with a strong recommendation for a stem cell transplantation asap.

He got a second opinion and didn't opt for a SCT, living without a lot of issues for some years. Progression is very, very slow and he still has the SCT option. The medians are often post perspective and the options (meds) with a MPN are increasing heavily literally every day.

Check with your doc, maybe get a second opinion and find a medications you feel being the right one for you.

[Jenny_F]

Most say normal life span if you manage it and I have had it for at least 20 years, probably longer but wasnt diagmosed

[CommonDaisy]

I am approaching 20 years with my MPN (diagnosed at 12 years old but think my platelets were high even before then..)

Sorry Google, but you are very mistaken! 😂

[Magentas]

I misread your post sorry, Daisy. I was only referring to MF! I do hope it’s ET you’re concerned about…

[Daisy-May in reply to Magentas]

Thank you I have ET and PV 👍

[NedKel65 in reply to Daisy-May]

Me too Daisy-May (both ET and PV )All of us are here to help

I was diagnosed 2016ish had a few other complications that required surgery but I think on good meds, good diet, low stress and self care we are up there to live a normal life expectancy as I read in most articles 😊

[Daisy-May in reply to NedKel65]

Thank you yes good diet less stress and good meds 🙋

[AndyT]

Don’t believe all you find online - stick to reliable sites like MPN Voice. Most people with an MPN can expect to live a normal life span if risks such as thrombosis are properly managed - I was diagnosed with ET 18 years ago and am still doing fine - just getting older..!

[Daisy-May in reply to AndyT]

Thank you won't be going online again big mistake! I'm going to stick with this reliable sight 👍

[Otterfield]

Daisy-May which MPN do you have? Life expectancy for ET and PV is generally no different from that of people in the general population. Even with MF there is no 'one size fits all' knowledge on life expectancy. There are some statistics but conclusions will vary according to to the kind of analysis used. For each individual with MF it is impossible to know but one very experienced haematologist told me "People live for a long time with this."Your last post was about how to deal with anxiety. Please, to help with your anxiety, stop googling! Google is a search engine, not an information source in itself. Stick to sources you know are reliable, like MPN Voice. Good luck.

[Daisy-May in reply to Otterfield]

I've Stopped googling don't know why the hell I did, Definitely sticking with MPN Voice that's for sure.👍

[lhammy66]

I think to be fair to you, we all google from time to time. Sometimes it helps, sometimes not - it depends on the sources. The hardest thing about this condition is the total variability. In my case I have PV JAK2+ but it’s an aggressive form and after two years has not yet stabilised. Finding the right management is proving difficult as I reacted badly to high doses of hydroxycarbamide. I’m being checked to make sure I’m not progressing to MF. All of this increases my anxiety but I know lots of people here are stable and living well. Trying to calm oneself and accept that we don’t know for sure is important and focussing on enjoying the here and now is good but none of it is easy. I find it’s a bit of a rollercoaster with times of calm and times of anxiety. So take good care of yourself and don’t judge yourself in terms of how you handle things. It takes time.

[Daisy-May in reply to lhammy66]

Thank you so true it really is a rollercoaster of emotions and the anxiety is awful it just comes out of nowhere! I hope things settle down for you and find another medication that will sort it out for you! Try not to worry not easy I know I can worry for England I've done that this week just about tipped me over the edge! Take care of yourself and let us know how you are getting on..🙋

[JeniMac in reply to lhammy66]

Hi Reading your post you say you don't tolerate high doses of hu can i be cheeky and ask what your symptoms are like as I am on 2000 hu a day and the last few months I have felt dreadful hot flushes constantly dizziness fatigue I'm due to speak to my haemotoligist next week as at moment only having telephone consultation which isn't best to get my point overI have ET with fibrotic changes and positive Jak 2 thanks

[lhammy66 in reply to JeniMac]

Yes all of these plus more mundane things like peeling skin at my nail beds, increased bruising, sore legs, tinnitus, some nausea, constipation or the opposite, huge day time sweats, loss of voice occasionally and visual disturbance. The worst bit for me is patches of brain fog and not being able to think straight or losing my own thread of thought, muddling words. As an academic this is particularly difficult to deal with as my life is orientated around critical thinking! For me my hydroxy has been reduced back whilst we sort out what’s going on plus the consultant is getting a second opinion. I’m also having a spleen check. Not sure if this helps?

[lhammy66 in reply to JeniMac]

I should add JeniMac that I emailed the specialist nurse with my concerns and I was brought in for consultation with the specialist 2 days later so have had excellent support and been taken seriously which helps a lot in an uncertain condition.

[JeniMac in reply to lhammy66]

I havnt seen my consultant for 16 months due to covid just phone consultations I have bloods on Monday then call on Wednesday I have mentioned my concerns but don't seem to get anywhere with them I also have aching legs ad brain fog thanks for your reply hopefully I can get some answers take care 💖

[lhammy66 in reply to JeniMac]

I hope so JeniMac. This was my first face to face for the whole of COVID so I think the specialist was concerned about me. I hope that you break through and get similar support. It maybe helpful to write it all down as making a list brought home to me how many odd issues I was having and then they can see in black and white how many bits of life are affected. My specialist told me that his job was not to make life miserable but to try and improve quality as well as length of life. Seems a very healthy perspective to me. I hope that you get the same response soon. X let me know how it goes as it sounds as if we have some similarities of experience and should buddy up so to speak!

[JeniMac in reply to lhammy66]

Yeah will let you know sounds like a plan sometimes you need someone in same position to understand

[lhammy66 in reply to JeniMac]

Yes I completely agree. And some find this journey less challenging in an escalation sense than others - the way of the beast I guess! It’s a strange condition with so many different consequences and still not brilliantly well understood.

[IrishHiker]

22 years since first diagnosed with ET and no doubt had it years before even before diagnosis since I had a DVT in 1973. “One day at a time” serves me well♥️

[DottyDaisy]

And of course, Daisy-May, anxiety can be a side-effect of the meds, too,

[AlexWheek]

With life expectancy studies we have to remember that the majority of people diagnosed with MPNs are quite late in life anyway - that will always make the statistics look bad because patients may have died from natural causes! I was diagnosed with ET at the age of 30 and had similar worries about it, but my consultancy team have told me that most patients can expect a normal lifespan.

[Rachelthepotter]

Check out which MPN you have , and what stage Wikipedia is surprisingly useful : articles on MF get updated. The statistic that I’d find helpful is the age at death of people with the various MPNs. Anyone know where that data might be? Ruxolitinib does seem to be extending life - data still anecdotal from haem to patient.

However , rux also triggers nasty aggressive spindle cell skin cancers - also anecdotal, but from dermatologists to patients. Haems now recognising this.

So if you have been sun exposed in the past , and are taking ruxolitinib, get any skin lesions checked out.

[Deefen]

It’s absolute BS! Ignore it!

[CraftySpider]

Hi Daisy-May, it is scary, I have googled stuff too..and then wished that I hadn’t ! I have had primary Myelofibrosis diagnosed for 18 years now and been taking aspirin& Hydroxycarbamide ( they think that I could have had it for as long as10 years before that) I have the Jak2 mutation , which means it could rapidly progress at any time, but try not to think about that too much and enjoy my ( very exhausted) life whilst I can.

[Pennypen]

I have had it for 23 years so that will clarify your mind

[Canbrit]

My husband has PV. Diagnosed 11 years ago. Has been treating it with phlebotomies and diet, but then the last couple of years added lots of water into his daily routine and exercise. His numbers are getting better the more he commits to diet/water/exercise and his need for phlebotomies are reducing. His doctor told him his positive attitude will do more for this condition than any thing else , including medication. Stay positive and look after yourself😊

[Daisy-May in reply to Canbrit]

Wow that's great your husband is doing really well thank you for reply I agree being positive is good exercise and plenty of water makes all the difference! 😊

[RobinBrum]

I had a rather daunting - and not exactly subtle - forecast from a haemo on my team two and a half years ago, telling me I had maybe two years to go. Well, I'm still here, and getting stronger. I suspect the plan was to get me to accept a SCT, which I am absolutely not in favour of. And looking at the survival graph for people with my set of mutations, she was at least statistically correct. But I have no plans to fold up and give way. Live well, live strong, and arm yourself with all the information you possibly can. I wish you well. Take what Dr Google tells you with an industrial-sized pinch of salt!

[Canbrit in reply to RobinBrum]

May I ask what MPN you are battling?

[Daisy-May in reply to Canbrit]

Hi I am ET and PV...