COVID-19 Outbreak: Advice for Patients with Myel... - MPN Voice

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COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020

Mazcd
MazcdAdministrator

Please look at the NHS website for the latest information and follow updates on the news and television.

Advice is changing frequently. Please make sure you are up to date.

The government’s general advice may be found here: nhs.uk/conditions/coronavir...

The Myeloproliferative Neoplasms (MPNs, including Essential Thrombocythaemia, Polycythaemia Vera and Myelofibrosis) are a group of blood cancers. The government has classified all patients with blood cancer (including MPN patients) as extremely vulnerable to COVID-19 infection

gov.uk/government/publicati...

The link above provides advice about appropriate social distancing and shielding measures. If you have received a letter from the NHS advising you that you are considered "at risk of severe illness" please follow the instructions you have been sent. This letter is provided by your GP, not your hospital specialist. This letter will explain how you can have full access to government support services that MPN patients are entitled to. If patients have not received this notification, they should contact their GP surgery and not the hospital.

As doctors looking after patients with MPNs there is still much we do not know about the impact of COVID-19 because it is a new infection. The government’s blanket advice in relation to extremely vulnerable individuals is made with the intention of minimising risk for all blood cancer patients.

For individual patients with MPNs, we provide guidance below regarding the likely level of risk. Decisions to self-isolate or shield are based on a range of different considerations and if you receive a letter from the NHS advising you that you are considered “vulnerable” or "extremely vulnerable" please follow the instructions you have been sent, and consider discussing your own personal circumstances with your healthcare team.

We will regularly update these recommendations as new data emerges. Below we summarise recommendations from UK experts in relation to management of MPNs during the current COVID-19 outbreak:

1.There is currently no evidence that patients under 70 with a myeloproliferative neoplasm (ET or PV) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban), venesection alone are at increased risk of COVID-19 infection compared with the general population.

2.Patients over the age of 70 with a MPN, or any MPN patient with additional illnesses such as heart disease, high blood pressure or diabetes, are considered more vulnerable to COVID-19 infection. Please remember that some complications of MPN e.g. some blood clots, could also make a patient fall into the “extremely vulnerable” cohort.

3. Patients under 70 who are on medications to control their blood count or their MPN, for example Hydroxycarbamide, Interferon, Anagrelide or Busulfan are in a group where the situation is unclear. Currently there is no clear evidence that these patients are at increased risk of COVID-19 infection.

4. Patients with myelofibrosis and those taking ruxolitinib have a weakened immune system and severe infections from other viruses have previously been reported in this patient group. These patients are therefore likely to be at increased risk of COVID-19 infection and should take the most stringent precautions.

In addition

5. All patients should continue with their current medication because keeping good control of your MPN is an important priority. If a patient with a MPN develops COVID-19 infection, in most cases it will remain appropriate to continue current medications, but this should be discussed with your healthcare team and considered on a case by case basis.

6. While there have been some concerns that ibuprofen or similar drugs may make COVID-19 worse, there is no current suspicion that this is the case for aspirin.

7. The life expectancy for many patients with a MPN is similar to that of the general population. Although MPNs are classified as a blood cancer, under most circumstances the diagnosis of a MPN is not expected to have a negative impact during assessment for treatment of COVID-19.

Please note that this represents the collective opinions of MPN clinicians; MPN is not a simple Blood Cancer. The situation may change rapidly please check for updates and if you are not certain discuss with your clinical team but bear in mind the pressures that they will be under.

Useful information links

To Register as extremely vulnerable – use this link

gov.uk/coronavirus-extremel...

General guidance – use this link

gov.uk/government/publicati...

If vulnerable – use this link

gov.uk/government/publicati...

Extremely vulnerable – use this link

gov.uk/government/publicati...

72 Replies
oldestnewest

There are no links for people in Scotland to register as vulnerable just England... therefor I cannot even get a delivery slot allocated to me as I am not on the database for supermarkets. I am forced to go out I have ET and on HU and asprine Husband is 78 and had a stroke. No slots anywhere and we have no family to help us...

Mazcd
MazcdAdministrator
in reply to Klys

Hello Klys, I am sorry to hear this, have you tried contacting your council for advice on this, they should have information for you about where you can get help either from them, or local charities or support groups, there are a lot of people setting up groups to help and assist people in your situation, so it is worth checking this out, you could even contact your parish council or local church, I am sure they will help and advise you. Best wishes, Maz

Threelions
Threelions
in reply to Klys

Hi, I live in a village and couldn’t get any slots for supermarket delivery. Thankfully the village shop have a team of volunteers that are delivering food orders. I don’t know if you’ve got any “local grocer shops” in your area that may be worth calling. Also you should have a local community Facebook page where people will offer to help you with shopping etc.

If you don’t have Facebook then I am happy to help you link up with anyone local that can offer assistance.

Mazcd
MazcdAdministrator
in reply to Klys

Hi Klys, update for you regarding advice and support in Scotland, they have a lot of information on the Scottish Gov website

gov.scot/coronavirus-covid-19/

scroll down the page to Health Advice and click on the link NHS Inform, there is also a free helpline number for advice if you don't have symptoms and need general advice.

Maz

Thanks Maz...it’s reassuring to see updates coming through.

For me though it’s still wonderfully unclear! I’m 45, ET Jak2 + on interferon and Warfarin (normal blood count on interferon). Generally fit, healthy, not had a sniffle of a cold since I started Interferon nearly 2 years ago...and not had a letter from the NHS yet...

I was really surprised to read this today as I didn’t think this applied to us with MPNs. I’ve not received a letter from my GP and they have never treated me as someone who has a blood cancer diagnosis. As I’m also pregnant after 5 years of infertility, I’m choosing to stay at home so that I can stay healthy and continue to attend hospital appointments. Perhaps I’ll need to speak to the GP tomorrow to find out a bit more but I’m conscious that I don’t want to take up their time as they’re so busy right now.

katiewalsh
katiewalsh
in reply to LinaZW

Congratulations on being pregnant. I’m really happy for you. Take care Katie

grgracey
grgracey
in reply to katiewalsh

Congratulations...I would like to have a family on my own and a baby in the future but I I am so afraid of the compplications later during the pregnancy and giving birth.

I am so sad I have no choice at all but to let go of my desire of having a baby. Can somebody say something about this matter?

Mazcd
MazcdAdministrator
in reply to grgracey

Hi grgracey, we have some information on our website which will help you, and can I ask that you put your query on a separate post so we can keep this post for answers/queries about the Coronavirus advice, and that way people can reply to your specific query about pregnancy with a MPN. thank you, Maz

mpnvoice.org.uk/living-with...

Thanks maz is anyone else confused? It says all people with blood cancer is vulnerable but later says et pts with aspirin only are thought not to be?

Ebot
Ebot
in reply to Irishgal12

It’s important to read all elements of the advice in order to come to your own decision about how to best manage the next few months.

Yes, MPNs are included in the blood cancers and therefore MPN patients are entitled to register as ‘vulnerable’.

BUT if you are under 70 and you are not on drug interventions and you have no other medical conditions which make you vulnerable then there is no evidence to suggest you are at any more risk of suffering severe infection than the next person.

And even if you are on drug treatments the jury is still out as to whether you are at risk of more severe infection.

As with much of COVID 19 there are few certainties.

The good news for younger patients with ET or PV who are on just aspirin or venesections (or both) and are otherwise healthy is that you can simply follow the same precautions as the rest of the population. That will be good news for many with childcare and eldercare responsibilities who need to shop for essentials, go for walks etc etc.

mhos61
mhos61
in reply to Ebot

That’s the way I interpret it too, but good to get your input as well. It is good news for me with my elderly Mum dependent on me.

Ebot
Ebot
in reply to mhos61

I think the best any of us can do is heed the Government official advice, take account of the finer detail added by MPN Voice and ultimately make a decision based on this knowledge which fits with the realities of our individual lives. One size does not fit all.

The critical thing in the MPN advice is that if you are concerned then you should discuss your individual and personal circumstances with your healthcare team. Of course, many of those healthcare teams are preoccupied with COVID and it’s fall out and many have been redeployed. I think the advice and information contained in the MPN post is pretty comprehensive and should suffice for most of us.

mhos61
mhos61
in reply to Ebot

Totally agree! Xx

Tico
Tico
in reply to Ebot

100% correct! 👍

Wyebird
Wyebird
in reply to Irishgal12

Oh yes yes yes I’m totally confused just read Maz update. I’m under 70 ET and on hu and anagrelide.

Haven’t received a letter.

One at of guideline say I’m in the unclear bracket the other says phone gp.

Ebot
Ebot
in reply to Wyebird

Hi there. See the exchange above. Wishing you well.

Hi Maz, I haven't received my letter. I have ET I take Hydroxycarbamide and clopidogrel. Unfortunately I have stages where I end up in hospital with infections, last admitted February. I rung my gp today, they said it is my consultant I need to speak to regarding a letter. She said they had had a few patients ringing this morning saying they hadn't received their letter. I was told stay home which I have done last 2 weeks..

Hi Max, I am 47 and a patient at Guys, I have ET/MF taking no medication and feeling reasonably well, would I come into the category 4, have never taken anything other than baby aspirin. Have received no texts or letters from the NHS or my GP. Your advice would be appreciated.

Mazcd
MazcdAdministrator
in reply to flog

Hello Flog, as it says, you really do need to discuss this with your own healthcare team as they know your medical history, present and past, and also know what your blood counts are. Best wishes, Maz

Well this is reassuring .......

“The life expectancy for many patients with a MPN is similar to that of the general population. Although MPNs are classified as a blood cancer, under most circumstances the diagnosis of a MPN is not expected to have a negative impact during assessment for treatment of COVID-19.”

Won’t be written off straight away. 🤣🤣

Hi Maz,Hope all is well with you and family and not pestered with folks treating Devon as an escape.In touch with Devon friends so know the problem of the second home people invading!!

Is it just me,I have known since diagnosis & H U before the Rux that my immunity is impaired and there fore 'vulnerable'to all virus,flu ,colds etc. I have not left our home for weeks before Macron locked everyone down.It is just common sense surely.

Keep well Maz,keep safe .

Bisous Sally

Mazcd
MazcdAdministrator
in reply to Inca

Hello Sally, yes thank you all good here, hope all ok with you over there. Keep safe and well, love Maz x x

Hi Maz, thank you for the update. I hope you are well & keeping safe. You take good care of us & we really appreciate it, especially during scary times like now. Stay safe! Katie

Mazcd
MazcdAdministrator
in reply to katiewalsh

Hi Katie, thank you, the team of doctors and nurses working on the update deserve the thanks and I will make sure they get them from you all. Definitely scary and unusual times we are living in, at least we can all keep in touch on this forum. You take care and be safe Maz x x

katiewalsh
katiewalsh
in reply to Mazcd

Thanks, Maz!!

Hi Maz,

Thank you for your usual kindness, endless empathy and dedication to this Forum..

I’m in Isolation and taking each day as it comes.

Absolutely frustrating that I cannot help the NHS in some area of Nursing..

Not Happy being classified as Vulnerable, hey ho it is, what it is..

So proud to see my former colleagues, working hard to provide excellent care.

Grateful to our Industries for collaborating and very soon we will see ‘C Pap’ and Ventilators in production..

Our Armed Forces contribution in turning huge Centres such as the Excel Centre London into a 4000 bedded facility..

All our Front Line Workers doing a Great Job...

Very Disappointed that Our Front Line Clinicians and Nurses as yet

“ Do Not Have Enough PPE”...

Take Care Maz,

Stay Safe to You and Yours..

Maria

xxx

Mazcd
MazcdAdministrator
in reply to pontygirl

Hi Maria, bless you my lovely, hope all ok with you in isolation, and I know how frustrated you are at not being able to help your former colleagues in the NHS, who are doing such an amazing job, but you know what, you are contributing to this forum and helping people on here with your calm and sensible and very loving words you offer to us all, so you see, you are doing your bit for all of us and I know you are there for me. So you take care of your lovely hubby and yourself. Lots of love Maz x x x

pontygirl
pontygirl
in reply to Mazcd

Morning Maz,

Firstly thank you for the kind reply, much appreciated..

We are all Lucky to have this Forum and you at the helm....

Ken has recovered from last Monday’s Surgery, I think Nature & the Fairies may have helped us out on his Bladder CA 🤞

Looking forward to hopefully having that long awaited Devon Cream Tea, before Summer ends..

Better Days to Come for the 🌎

Our Best as Always to You & Yours, Cwtch for Bart.

Love Maria & Ken xxxx

Mazcd
MazcdAdministrator
in reply to pontygirl

That's wonderful news about Ken, I am so pleased, fairies definitely helping. And I do hope we get to have our Devon cream tea this year, so looking forward to seeing you again. A big Cwtch back to you both of you, and Bart said thank you. Lots of love Maz x x x

pontygirl
pontygirl
in reply to Mazcd

🌻🏖🐶🦋🌞🧚‍♀️🍰👒🍓🍧

😘😘😘

I too am confused, states all blood cancers classed as extremely vulnerable then tells us it’s not, know how difficult it is to cover every eventuality but all of the information about Covid is open to interpretation and no one really knows, leaves a lot of people confused.

Ebot
Ebot
in reply to lindyloulou

See my reply above. The advice is pretty comprehensive. There’s plenty of detail to enable us each to decide the most appropriate course of action to fit our personal situation.

Me too, as firstly states extremely vulnerable, then I fall into the ‘No 3’ under 70 on hydroxycarbamide category which states ‘unclear, no clear evidence of increased risk’, so still confused as to whether I’m ok to go back to work in a hospital?

Ebot
Ebot
in reply to Grumpyfairy

Hi there. I suspect there is a fine line to walk for those of us in the under 70 but on Hydroxy group.

Personally we’re in complete lockdown with our teenagers because of other half’s asthma and history of lung disease. However, if it was just me - and a family member hadn’t ordered us both to stay home and offered to do a weekly shop (!) - I’d probably still be popping to shops and definitely going on walks!

I don’t think though I’d be going out to work, especially if it was in a hospital. And in that respect being on the ‘vulnerable list’ would legitimise my choice in terms of access to work related red tape.

It really is a personal choice and one that’s got to work for you and your personal circumstances. Everything has a risk of one kind or another attached to it. It’s a case of making an informed decision that works most perfectly in this imperfect world. All the best.

Grumpyfairy
Grumpyfairy
in reply to Ebot

Hi Ebot. Thank you for your reply, much appreciated. Yes my main worry is work, they actually rang me last week and told me to stay off, but now they are on about doing a risk assessment, so hence unsure with the different information coming through. I’m not going to the shops, my husband is doing that but I try and go for a walk every day, as Im lucky enough to live near open countryside. Hope you and your family stay safe.

Well done Maz. The lastest update gives clear and concise information to all. Because of the uncertainly of many,they now hopefully feel they have more information as you made it clear the 'vunerable letter' comes from our Gp's. I have had the letter which came from my Gp but I believe it came because I have other underlying health conditions not Etjak2 on its own. I hope now it is a bit more clearer people will now not take up the precious time of our consultants or their secretaries who are extremely busy and as well as dealing with COVID19 they are also dealing with people a lot worse of than us especially children with leukemia. Atb,tina.🤗

Mazcd
MazcdAdministrator
in reply to Tico

Hi Tina, I will pass on your message to the team who put this update together. Hope you are doing ok in this very strange times, take care and be safe love Maz x x x

Hi Maz

Really sorry to bother you but I’m still confused about this. I am 40, have ET and on 500mg of Hydroxicarbimide a day. My main concern is I have 2 kids and my husband works in food production so has to go into the office at the moment. The only time I go out is for a walk once a day with my kids for fresh air. I have majority of our shopping delivered now and my husband goes out once a weekend to pick up anything else. Should I be sleeping in the same bed as my husband and should I be asking him to try and not go into the office?!?! My consultant said I was ok to go for a walk and pop to shop once a week if I really need to but to ring straight away if I have symptoms to discuss next steps. This was last Thursday after my blood count was checked.

I am confused as to whether I am extremely vulnerable and should be asking for a letter as do not have one.

Thank you

Becky

lhammy66
lhammy66
in reply to BeckyDing

My reading of the advice (I am in this category too) is that we should not be at greater risk. There is lack of clarity for our group because there is a lack of data to date on this - not surprising as it's a relatively rare condition and also very varied conditions and treatments within it. We appear to be at risk (as we would be to any virus) but not at extreme risk so I am carrying on as you are which seems sensible to me until we hear differently. I don't think we have much choice but to live with some uncertainty - I don't think there are any definitive answers out there as yet.

BeckyDing
BeckyDing
in reply to lhammy66

Thank you for replying - reassuring to know you have read this like I have. I was going to ring my consultant again this morning but I will leave for another week I think! I honestly think further lockdown restrictions will be happening later this week as still so many people seem confused in general and non essential workers still going to work. My husbands boss is now in self isolation with cough and mild fever so I am quite anxious - his boss has his own office so said he maintained being 2metre apart and was making Ben shower as soon as he got home from the office last week and feel my one walk a day with the kids is keeping my sanity so to take that away no idea how will cope!

I know if I ring my GP they will have no idea whether would be high risk or not.

I agree with you where we have to live with this uncertainty- I don’t think we should be like this though and think bloodwise should be speaking to each hospital who have mpn specialisms to clarify this.

Take care and keep safe

Thanks

Becky

lhammy66
lhammy66
in reply to BeckyDing

Good luck Becky and I do hope your husband proves to be uninfected. Washing should have helped a lot. Linda

BeckyDing
BeckyDing
in reply to lhammy66

ha ha hopefully! I have emailed my consultant this morning with the paragraph from the blood cancer website about MPNS and asking for clarity.

thank you

lhammy66
lhammy66
in reply to BeckyDing

Let me know how they respond. Mine said medium but not high risk.

BeckyDing
BeckyDing
in reply to lhammy66

Hi

I spoke to my consultant again yesterday and emailed them paragraph from blood cancer UK re MPNS being high risk - they said we are unknown but did not think we would fall into high risk if blood counts stable - he said again that if I did get symptoms to ring them to discuss a plan of action as we should not follow the rule of if you are still sick after 5-7 days ring 111 etc we should get in touch straight away. Also said about coming off meds if this was the case also for 1 week to 2 weeks until recovered but not to do this without speaking to them first. I feel reassured again as yesterday I was worrying about it all - thank you for your advice and help!

Take care

Becky

lhammy66
lhammy66
in reply to BeckyDing

That's good to know and I'm glad that you feel less worried now. It's a difficult time on top of a difficult condition- it tends to make us more anxious. Lots of luck, Linda x

Not happening in Wales, my wife is still expected to visit hospital for blood tests, the GP surgery is closed. No help from council. I have to do the shopping, and collect drugs from pharmacy. We are lucky in that we live in the sticks.

Ebot
Ebot
in reply to jointpain

Have you signed up to Pharmacy2U - the online pharmacy? Might save you one trip out. (Though we’re experiencing issues with Royal Mail right now in London and a very intermittent service. )

jointpain
jointpain
in reply to Ebot

This is Wales, pharmacy 2u at a guess only applies to London or England.

Ebot
Ebot
in reply to jointpain

You’re right England only 🙁 (I double checked). I was having a presumptive UK moment. Apologies.

Mazcd
MazcdAdministrator
in reply to jointpain

Hi Jointpain, there is information on the Welsh Gov website

gov.wales/get-coronavirus-s...

best wishes, Maz

Hello Maz,

Can you help me I live in Scotland and have just spoke to our GP service NHS Scotland have not given advice so as a patient with Brain clot than ET Jak2+ and too many conditions to cover .They have no vulnerable lists full stop.

He asked me what difference would a letter to say I am high risk do?

I have heard that community hubs may be being set up but wait to see.I am self isolating and my husband has to shop so this means we cant do it properly .We live in a small flat.Even my mum with COPD has had no help.

Mazcd
MazcdAdministrator
in reply to lavender007

Hello Lavender, if you use the link to Register as Extremely Vulnerable there are links for people living in Scotland you will be redirected to the Scottish Gov site, gov.scot/coronavirus-covid-19/

scroll down to the link Health Advice and click the link NHS Inform, there you will find lots of information.

Best wishes, Maz

lavender007
lavender007
in reply to Mazcd

Hi Maz

This is so valuable my local health authority seem to be in process of setting upcommunity hubs for people sheilding.Way behind England.

Thank you Lavender

Hi All & Thanks to Maz, as always, for the update.

I’m ET, on Interferon, aspirin. I have high blood pressure and take medication for that also.

The high blood pressure “add on” is a very significant factor in Covid (according to my close friend who is a medical professor).

I decided to not take any chances and haven’t been out for over 2 weeks and plan on staying in until safe to go out.

Mazcd
MazcdAdministrator
in reply to Threelions

Stay safe and well is the best thing we can all do, so take care, Maz

I have just received my shielding letter from my hospital thank you Maz for all the advice you are giving us. Take care everyone and stay safe xx

Mazcd
MazcdAdministrator
in reply to Hughley

I will pass on your thanks to the team, and take care and stay safe, Maz

Thanks for putting this together. It is the most concise, objective and sensible summary I have seen to date. I hope MPNers everywhere will see this so they can make informed choices.

Here in the States things are a bit of a mess as we move towards the COVID 19 outbreak peaking. I live in Harpers Ferry WV, which is on the edge of the Washington DC metro area. This is a multi-state area, with four different States affecting the daily course of affairs. The States have not worked in concert, so there is inconsistency in how they are responding. Advisements from the governors have been moving towards orders, so perhaps folks will listen better.

Looking forward to a return to normalcy. Meanwhile stay well. All the best from this side of the Pond.

Mazcd
MazcdAdministrator
in reply to hunter5582

Hi Hunter, thank you I will pass on your comments to the team, we are very fortunate in having such an amazing group of doctors and nurses who all had input into the advice. I hope it all gets better for you all over there in the States, and please take care and stay safe and well, Maz x

As always Maz...

Thank you for keeping us all in the loop...

Steve

Mazcd
MazcdAdministrator
in reply to socrates_8

thanks Steve, appreciate your support on this forum and for supporting people on your MPN Mate forum, good job and well done. Take care and stay safe and well. Maz

socrates_8
socrates_8
in reply to Mazcd

We're all in this together Maz... 8-)

Steve

ox

Thanks very much for this helpful information

Hi Maz,, i tried emailing you yesterday but my email bounced back ...have you changed your email address and also did you receivedm my letter regarding direct debit?? Diane

Mazcd
MazcdAdministrator
in reply to Tarot1234

Hi Diane email address is maz.cd@mpnvoice.org.uk and info@mpnvoice.org.uk can you email me about your letter and I can reply by email, thank you, Maz

Hi Maz. Hope you are well. This advice is clear but seems different to what I read yesterday on Blood Cancer site. I rang my surgery yesterday and was told GPs are going through all their patients' records (bless 'em) to ascertain who needed a 'shielding letter'. The aim was to send out letters by yesterday. I haven't had one yet so was told to ring back by end of week.

I think this is good advice from the team and corresponds to that given to me here in Germany by my haematologist also an MPN specialist.

I think people are seeking absolutes which are impossible to give as it’s a new disease plus so many variables weight, age, other secondary conditions all come into play - it makes more sense to discuss with our own respective clinicians our specific profiles to determine risk

Is it possible to please have an update on the facts to see if they still remain the same Thanks

Mazcd
MazcdAdministrator
in reply to Dovme

Hello Dovme, there are no further updates are presently available, is there anything specific you are particularly interested in? Kind regards, Maz

Dovme
Dovme
in reply to Mazcd

Thanks for replying. My query relates to advise given to those of us with ET and only on aspirin. The advise you posted from the team suggests we are at same level of risk as the general population. This is also what my haematologist advised me

However several recent posters here have now received what appears to be revised advise that all MPNs are at high risk including those of us only on aspirin

Hence l was seeking an update for us all

Thanks

Mazcd
MazcdAdministrator
in reply to Dovme

Hi Dovme, hopefully the webinar tomorrow will help. Maz

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