I’m still a bit confused from the PMs broadcast. Will I be getting a call or letter from the NHS? I have ET, platelets around 1450. Not on treatment. I’m 48 and had ET about 10 years or so. I work on the railway so lots of contact with the public. x
Will I be getting a letter?: I’m still a bit... - MPN Voice
Will I be getting a letter?
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stevenjust
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Hi Steven, I find all the info confusing as well, particularly the seriousness of the virus. Hopefully in about 10/12 weeks we'll be looking back at this event with relief. Sorry cant answer your question but just to let you know, you're not the only one!
Take care, kindest regards Aime xx😻😻
Hi Steven, as I understand it, We will get letters if we get free flu jabs. I am following the guidance give by MPN Voice here and by e-mail to members of this forum, regardless of whether I get a letter. If you're not on treatment, you would be in the first group, with no known increased risk. But please don't just take my word for it! Check!
I understand it as we will be receiving letters.... it states all blood cancers....
Hi, its so confusing isn't it. I think also that if you are taking chemo treatment (i have 3 tabs daily) it is also a bit of confirmation. My sister also said that hubby will have to isolate too and he and I had quite a bit of a barny yesterday as he doesn't seem to think this is the case. Think we will have to wait, it will help to have this discussion site!
He should also isolate to keep you safe x
My husband is a high school teacher and I'm a staff nurse, I'm in isolation for 12weeks, but feel its a wee bit pointless (for me) because he is still away to work this morning... we also had cross words over this at the weekend 😞
Hi Lainy, I know the stress does lead to grumpiness and arguments. In Scotland high school teachers are not allowed to go to work, although my daughter did go in for a couple of hours to organise the seniors’ course work and how they are going to be “teacher” assessed.
I’m sure it will soon be the same everywhere. Kindest regards Aime xx😻😻
Hi Aime
It's in Scotland he teaches.
All teachers in his school were in today but only for about 30 pupils.
Surrounding schools in the local area had similar numbers. They are going to have one central school for them all to go to.
His head master was looking for volunteers to go in.
Needless to say he did not volunteer due to my MPN. Worrying times for us all.
Stay safe 🙂
Yes I've heard there will be a school hub. My son in law is due to go offshore on monday which would mean she would have to ask us to look after the kids. My hubby has asthma and is prone to chest infections so we cant do it.
Missing my grandkids but no choice. As long as we are all healthy at the end of it, we will soon forget all the current hardship.
Keep well, kindest regards Aime xx😻😻
Hi. I think we’ll get a letter but they did say that there could be nuances and in consultation with your GP you can go on or be taken off the list- but don’t ask GP until the following week. Take care. Jacquie
PM stated all blood cancers but also all rare diseases so definitely expecting a letter to land through our doors. It's because so few MPN patients are likely to have already had the virus that they do not know how it will effect them. Therefore best to be protected. Stay safe x
Gosh high platelets keep well. Do you have an MPN specialist? Are you able to work full time?
As for me I’m scared about receiving a letter too. I think that our clinics might not send one if WBC are good but GP will to be on safe side.
Hi yes I work full time and feel fine 90% of the time. I have a good employer who knows when I need time out. I am at Guys so have the best care team. My platelets were around 600 whilst I was on hydroxy but I asked to be taken off due to the effects, they then shot up and have remained at this level, I’m on two monthly check ups. 1500 is my cut off Mark I then been advised to go back on treatment. I don’t feel like I need 12 weeks at home, but I suppose we should listen to the experts.x
Now I know you are at Guys I rest easy. I too am there. Every time I visit ( usually every 2 months also) I think myself lucky.
Keep safe x
Unfortunately it’s not about about what you feel you need it’s about what’s safe for you your family and our nhs
It’s just been on tv that people being quarantined are on immune suppression meds. Still not clear regarding us . Just gives me a little hope x
It will be interesting to see if England, Scotland, wales and NI all have the same advice. Stay safe, I’ve been social distancing for 12 days.
I have ET and have been treated for 3 years. I had suspected sepsis last year and went to A&E for treatment. I told them I was from the oncology unit so they could prioritise me. However once I was seen by the doctor he asked me what cancer I had. I told him I had ET and he said that wasn't a cancer. I thought an MPN was a type of cancer but now I'm not sure and therefore also wonder if we are in a vulnerable category ?
ET was reclassified as a type of cancer a few years back. I think because it’s such a rare disease not often seen by general Medics & Oncologists. It could be that they’re not updated as it used to be considered a blood disorder. Someone posted a link to bloodwise on this site yesterday and it’s stated that MPN’s are included in these measures.
Keep well,
Joanne x
Hi Joanne, the doctor did know what MPN was, he stated that it was a blood disorder and was treated under heamatology not oncology. I wasn't given a cancer card to prioritise me as a cancer patient in A&E therefore he said it was not a cancer.
Hi Jocko,
The World health Organisation disagrees with your Doctor.
Because MPNs are characterized by uncontrolled cell growth, fitting the National Cancer Institute’s definition of cancer, most doctors and major healthcare organizations classify them as blood cancers.
Initially MPNs were called Myeloproliferative Diseases until 2008 when the World Health Organization reclassified them as cancers and renamed them Myeloproliferative Neoplasms.
In the scheme of cancers it is probably not considered to be the most serious - rightly so - but it’s important that we are personally well informed to insure that we get the appropriate treatment we need for our rare disease.
All information you need is on MPN Voice & the Bloodwise websites.
I really hope I haven’t come across as patronising. It’s not my intention.
Best wishes & stay well.
It is classed a cancer.... unfortunately these doctors are not up to date which is quite scary
Very confusing, I am on Hydroxycarbamide which I checked is chemo, for ET, had for 5 years so feel confusing they say wasn't cancer? Surely if we are taking hydrox.. we are automatically lowering our immune system so automatically more vunerable, suppose we will have to wait and see but I will check with my surgery in a few days to see if we need to contact our haemo consultant.
Hi there. Hydroxy in the doses taken by MPN patients is chemo with a very small ‘c’. You’ll see there’s been lots of discussion recently about this especially in relation to the Coronovirus outbreak. There’s little evidence to suggest that being on Hydroxy makes us more vulnerable to severe infection (mild infections maybe).
However, the issue right now is that no one knows enough about the effects of COVID 19 to say for certain whether if you have an MPN and are receiving drug treatment you might be considered high risk. Hence the fact that advice is shifting and that to be on the safe side it seems MPNs are to be included in the ‘high risk’ category.
Hi Steven
I’ve just posted a link. I think that we will receive a letter given the information on the bloodwise link.
I have ET too, take aspirin and my platelets are 1195.
MPN’s are classed as blood cancers and it’s annoying when we are told by medical professionals that they are not.
I’ve also emailed my consultant and will share his comments too.
Jayne x
Morning my lovely
I have read up on this and, yes, we should be getting letters. If you haven’t got a letter by next Monday (the 30th) then you have to phone your GP or your consultant.
Good Morning folks, , I hope you are all as well as can be and not too stressed out of your trees as my wife and I have been a few times lately over this dreadful rapidly developing shituation. (Oops I've mispelled that! )
I'm afraid I'm going to have a little meltdown 😬 here but it's well intentioned. . And I'm probably saying much or all of what you already know but it's just my point of view and I'm a frustrated if not angry wee chap at what's going on in the UK and how I see it as a person who has fought bloody hard to overcome my MF via SCT and stage 4 Graft Versus Host Disease which very nearly got me.
I'm a fairly level headed kind of guy (I think ! ) and not given to scaremongering or believing everything I see on social media etc, but what I would say is regardless of whether one gets an NHS letter or not and I'm sure many on here will this virus is a threat to anyone whether or not they have an underlying condition. The severity can depend on your level of exposure for instance which is why some front line health workers abroad have sadly died. Also some young folk both here and abroad with no underlying conditions are hospitalised on oxygen and thankfully are more likely to survive. We've all seen some of the copious coverage.
Also I think we have to look at this bigger picture to see that we, our partners and families should be doing all we can now to protect ourselves especially with an underlying blood cancer with or without meds. A few examples being the climbing mortality rate in Italy, Spain, Iran which I find scary. Also the stupidity and sheer ignorance of a large section of the UK population who aren't helping themselves or us by their irresponsible actions. Only yesterday they were packed like sardines outside and inside supermarkets, markets and garden centres. They were close together in parks ,some guys playing football and using keep fit equipment , and they were on promenades and beaches. Is it me dreaming about this thing called Covid 19 or under estimating the situation. . . I don't think so.
I know it can make a difference whether or not you get a letter to self isolate (and your partner though they can go out but you must social distance in the house , how does that work?) for 12 weeks though the details of help to do that are scant just now. Also appreciate it may depend upon whether you need to work or not if you're a key worker.
I have been in for a week now and after the PM s bulletin yesterday my wife is also staying in with me for as long as it takes. We haven't yet sorted out the detail but I doubt we will be able to enjoy our normal fare or freedoms over the next couple or few months. A small price to pay in my opinion. Though not seeing our Grandkids is hurting but we have the benefit of the Internet.
Sorry it's a tad lengthy and apologies if I sound like I'm preaching or indeed preaching to the converted.
Protect yourselves , stay home and stay safe.
Regards - Chris
Totally agree Chris. Take care, love to both of you. Kindest regards Aime xx😻😻😻😻😻😻
Ps I'm missing the grandkids too but we will be able to make up for it in a few weeks/months time.xx😻😻
Hi Chris,
So lovely to hear from you and I agree with everything you have said.
I’m glad you are both isolating, I’m sure Kate would not want to bring any germs back from the supermarket.
You have been through so much and are very stoic. You’ve been through all this isolation stuff before after your SCT so know what’s involved, some of us are still learning, me included. 😂.
I have 17 family and friends birthdays between now and the end of June, including my three daughters, grandchildren and my own! Luckily, I bought all the cards a couple of weeks ago so I’m going to sit down today and write them all ready for posting.
Stay safe both of you,
.
Lots of love
Judy xxx
Hey Judy thanks for saying hello. . You're right Kate says she couldn't live with the guilt if I got it because she had been shopping or to the hairdressers , of course that isn't what I would want. You're also right in that I had 2 years virtually nailed to my living room chair , the difference being that was forced and I was too ill for the first year or so to track time even. Now of course I'm fitter and want to live the life I fought hard to hang on to. But as you also say it stood me in good stead for what hopefully will be a much shorter haul if people take heed of Govt and NHS advice now. . .Ideally before its enforced.
We too have Grandkids birthdays looming I've asked my son to get them something from us or if I see something on Amazon I will have it sent there if he OKs it. Like you we shall post their cards. Unfortunately I don't have one for you my friend but I will wish you a Happy Birthday in advance 🎂.
Lovely to hear from you . Love - Chris xx
Bless you Chris, mine isn’t until 10th June but I will save your cake for then. 😂 I remember one of your grandchildren was born around the time of my grandson, 24th May. Coming up for 6 years old. Gosh! We’ve all been on this site such a long time, hopefully we’ll all be here in another 6 years.
Take care my friend.
Judy xx
I mean this in the nicest possible way please don't post your cards. My husband is a postman they are consider an essential service so he is continuing to work. Yesterday from 5.30-6.00pm they are overwhelmed and have not been issued with hand sanitizer or gloves. Please send a lovelly text so it's a few less doors and risks the postman has to take x
Wrote to my consultant and was told hydroxy will more than likely not affect immunityat all and if it does it will be negligable.
Regarding the isolation re blood cancers, my understanding was this referred specifically to the more serious disorders e.g. leukaemia etc and not ET which I have.
So all in all it seems positive to me and I don't see need for any extra special precautions
Mpn have been included in the high risk group!
I'm not sure those MPN patients who are on apsrin, blood thinning tablets and venesection alone will get a letter as we are not considered to be high risk.
I’m very confused! I have ET on aspirin and Hydroxy. I work in a hospital and my manager phoned me last week while on annual leave to say I was high risk and will probably be best to be off work for a while. She has now phoned me today to say I can go in and they will do a risk assessment, which as I cover reception, not sure how that would work, even if they have me alternative duties to do, they is still staff in and out of the office who are in contact with patients etc. So feel anxious and a little bit under pressure to go in. Rang my GP they’re not sending any letters out. Rang Heamatology secretary’s, they don’t know of any letters, will phone me back! But on Bloodwise it says high risk and basically stay in for 12 weeks, any advise will be much appreciated x
It’s actually a nightmare all of this! My consultant has said that I am no higher risk that a normal person but that contradicts the latest information online which clearly states
“There are some uncertainties in the clinical community about whether certain groups of patients are at a higher risk or not, such as people with CML taking TKIs, and people with MPNs. While it's true that these conditions and treatments don't normally affect the immune system in a clinically significant way, coronavirus is a new virus, and we can't say for sure that these people are definitely not at a higher risk. This is why the NHS does include people with CML on TKIs and people with MPNs in the higher risk group outlined above”.
I’m have ET and only take aspirin! Just wish we knew what we are supposed to do.
I’ve emailed the Bloodwise helpline too!
Jayne x
Could you email your manager quoting the relevant information from ‘Bloodwise,’ as that specifically states the NHS includes MPNs in the higher risk group.
Exactly.... people need to read this and stop getting and listening to information from else where... this is the only information people should be acting on....
And the information from MPN Voice, which is more nuanced and specific regarding different treatments. And of course our own consultants.
Thanks for you reply Jayne, it’s all very confusing, isn’t it. I’ll perhaps send an email too. Just need some direction as to what to do x
Let me know what your says so we can compare notes! X
I too am confused about the whole thing and wish we could get clear direction. Maz did put a post on which I took to mean I'm at no higher risk with ET and only on aspirin? Since then have read posts saying blood wise etc state we may be at higher risk so need to self isolate although I have not seen any further updates from Maz confirming this? Maybe I've missed them? Would so appreciate some clarification on this. Also I live with my husband who still has to work so there's no way I can completely self isolate as we have to use all the same facilities??
Do we have any updates from Maz??
As I said I may have missed them?
I’ve not seen an update but I too saw the post from Maz. We could do with another update. X
There may not be anything to update. Maz's information was put together by MPN specialists, so that will be my guide unless I hear otherwise.
I have ET and take clopidogel only due to being allergic to aspirin. I don't really go on here unless I'm concerned and need help. I've only just seen on the news today saying people with "blood cancers" should stay at home and had a text.
I work full time and abit anxious if or will we get a letter. I've written on here so I can get updates.
Hi I’ve not had any letter yet so am just carrying on with going to work then straight home again. I’m still none the wiser whether or not I will be receiving a letter.x
Hate waiting around specially when we have bills & a mortgage to pay for
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