What defines ‘Extremely Vulnerable’ for MPN?

[Paul123456]

Is everyone with an MPN classified as Extremely Vulnerable?

I’m EV but assumed because I have very low Lymphocytes/T cells on top of PV.

The risks with Covid are viral pneumonia as a result of weakened immune system (I assume this is why the old more vulnerable?) and the dreaded Cytokine Storm inflammatory response which targets the obese, diabetics and others with raised inflammatory markers such as IL-6.

Assuming our bloods are good we should be same as everyone else of similar age re combatting the viral pneumonia?

I’m not sure whether the Covid induced inflammatory response is exacerbated by the raised level of inflammation within MPNs?

And to what extent we need to be monitoring our platelets re the clotting risk. Do low platelets reduce this risk? eg those of us on Pegasys/Hydrox

[AndyT]

In the UK we’ve all been classified as extremely vulnerable on the basis that MPNs are classed as a type of blood cancer.

Logic suggests that there must be different levels of vulnerability depending on which MPN you have and the degree of control / progression but I’m happy to err on the side of caution and have pretty much been shielding since last April, even though my haem suggests I am probably fairly low risk with ET controlled with Pegasys.

[Chaz1 in reply to AndyT]

Hubby was told yesterday that he isn't classed as vulnerable with ET/PV, treated with aspirin & venesections, his bloods have been all over the place for past year & isn't now getting the vaccine any earlier 🤦‍♀️ If he starts treatment then he might then be classed as vulnerable but he was told by specialist nurse doesn't need to shield!

[Jenny_F in reply to Chaz1]

I would challenge that - was that a GP or the hospital? You should get the hospital to confirm that he is in the ev category as we have a cancer and a risk of clotting which seems to be a symptom of Covid

[Chaz1 in reply to Jenny_F]

That was the hospital specialist nurse. He's never been told to shield, I've tried my best to get him to. He doesn't work so not a major issue. Consultant said he was on the list as vulnerable to get the covid vaccine but nurse saud yesterday that he wasn't in that category so who knows when he'll get it. He has a face to face appointment at end of month so we'll bring it up then. I always thought he was classed as ev & we've had a lot of arguments over it as he's very much a head in the sand guy over his health in general.

[Jenny_F in reply to Chaz1]

Which hospital is this? Guys have been great and even my GP added me to the ev list once I explained ET

[Chaz1 in reply to Jenny_F]

Addenbrookes. Sadly they can be very hit & miss. I'm not expecting him to get a vaccine much before anyone else his age, he's 50 so not very high on the list.

[Jenny_F in reply to Chaz1]

Yes I haven’t had great experiences in the past with that hospital. Maybe you can quote people like me at Guys that are and wanted to be on the list and how that was supported

[Chaz1 in reply to Jenny_F]

Thanks, hubby will mention it at his appointment. Not sure they'll allow me in atm but hoping they will.

[Eadaoin in reply to Chaz1]

I suggest you take along information from the MPN website. Best wishes

[Mazcd Partner MPNVoice]

Hi Paul, the advice we issued on our website might help

mpnvoice.org.uk/coronavirus...

[Runner999 in reply to Mazcd]

Hi Maz ! The info on your website is what I have been using to classify myself (ET, no symptons, Hydroxy + Clopidogrel, 65 and active ) as probably not unduly susceptible to the effects of CV19 - especially as I think I had a very mild illness after known exposure over a week ski holiday in early March.

However, the assertion that GPs rather than consultants are responsible for all shielding letters / lists does not fit my experience.

UCLH issued a first shielding letter to, as far as I can see, all attendees of their McMillan centre in London which was followed up by an e-mail and letter from the MPN Clinic team. Subsequent lockdown letters coming from the Dept of Health.

I have had zero communication from my GP on the issue.

It does not matter to me, as I am retired and effectively shielding anyway - but the fact that some GPs / consultants have been issuing letters to all MPN patients and others are refusing seems to be causing some distress to some working people - both those being expected to work and those being refused admission to work on H&S grounds !

Is MPN Voice engaged in any dialogue which could give more clarity on this? Or is it a question of some medics saying "better safe than sorry" whilst others have decided that a non-invasive cancer is not a risk - unlike leukaemia etc? (On a FB page I have seen some ET/PV patients still being told that it is not a cancer!).

[Mazcd Partner MPNVoice in reply to Runner999]

Hi Runner999, we are aware that in general the shielding letters were being sent by the hospital departments to MPN patients, and the decision on placing people in this category was and will be once again, decided on each individual patient by their haematologist who will assess the patient's risk factor. And yes, MPN Voice is in dialogue about this. Best wishes, Maz

[mhos61 in reply to Runner999]

I think some hospitals struggled to identify all ‘clinically extremely vulnerable’ patients initially, hence GPs were called upon to check patients records to help identify further patients. That is my understanding.

The following link maybe helpful

digital.nhs.uk/coronavirus/...

[mark382]

I have been looking since March when shielding was issued, although I've never received a letter, to find a definitive explanation of extremely vulnerable. I know it says cancers of the blood and bone marrow, like leukaemia, myeloma and lymphoma. I've not been able to find a definitive statement that MPNs are included in blood cancers on relation to extremely vulnerable. I know World Health Organisation classes them as blood cancers. I looked at a lot of posts early on and shielding letters appeared to be very hit and miss. I've been self shielding and will continue to do so. I have PV on aspirin and venesections. I'm also asthmatic. Take care and keep safe.

[Mostew in reply to mark382]

Strange isn’t it .

I’m still resisting vulnerable category and get laters every month which I throw away. Not even reading them xx

[mhos61]

Good question.

Apparently, I’m considered not ‘extremely vulnerable’. I am 65, have ET and take hydrea.

I couldn’t shield anyway, as I have care commitments, so this suited me. But after the first lockdown I asked my GP for clarification of why I had not been found ‘extremely vulnerable’ when Blood Cancer UK and the government had stated all blood and bone marrow cancers would be in that category. At my insistence, he emailed my haematologist to discuss my case. Her reply was, she felt I was ‘vulnerable’ but not ‘extremely vulnerable’ based on being under 70 years old, stable disease and no additional health issues.

So, in answer to your question, I suspect the majority of haematologists quite rightly went along with the government guidance at the time, others didn’t...

[Paul123456]

As Andy says, it’s a very broad brush and some of us much more at risk than others. But for my very low T cells I’d rank myself the same as any other healthy 65 year old.

Covid is a strange disease. I have a medic friend mid 50’s, fit and healthy who nearly died over Xmas, saved by monoclonal antibodies. Also know a 91 year oil granny, infected similar time, who can’t understand what all the fuss is about!

My medic friend now back in action, confirms what we see on the news. Sod all spare ICU capacity and will get worse over next two weeks.

[mhos61 in reply to Paul123456]

‘Covid is a strange disease’ absolutely agree!

I have Asian friends in their late sixties, the husband has diabetes, and their daughter had a kidney transplant over ten years ago, she is now on kidney dialysis awaiting another transplant. They all got Covid and survived without any intervention, other than paracetamol.

I’m left bewildered at their relatively mild response to this virus, considering their ethnicity and their additional comorbities.

[Jenny_F in reply to Paul123456]

I think the hit and miss nature of this virus should mean that we really should be on the list with conditions like ours as we cant tell what effect it may have. I think I had it in Jan/Feb, before covid was understood, and nearly ended up in hospital and I am under 50. I really wouldn’t want to go through that again as I am not convinced I would make it. Our neighbour had it and ended up on a ventilator. Its been months and he is still not right as its affecting his breathing and mobility. A colleague of mine who was under 50 and has no conditions also died from it so we should all be taking this seriously