Uncertainty over MPNs re Coronavirus

[Ovingite]

Hi folks,

I suspect that I am not the only one to be uncertain about where MPN sufferers stand regarding coronavirus - are we at increased risk or not? I suspect that the answer is "it depends upon your other health issues". However Bloodwise have issued an information sheet for all types of blood cancers, which includes this advice for us MPNers:

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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.

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Chin up and take care people, and hopefully we will all be let loose on the world in the not too distant future

John

[Raphael_UK]

I’ve had the message & I have no other issues other ET

[Ovingite in reply to Raphael_UK]

I'm taking the view of "if in doubt - don't go out" and confining myself to the house and garden and a daily walk around our (spookily quiet) village.

[Dazakella2010 in reply to Raphael_UK]

did You get a text about being high risk?

[Raphael_UK in reply to Dazakella2010]

Yes & 3 more advice texts

[Raphael_UK in reply to Dazakella2010]

NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.

Read more advice about staying safe at home.

gov.uk/coronavirus-extremel...

We will send you more messages with information.

To opt out reply STOP

[stevenjust in reply to Raphael_UK]

Hello Raphael, do you mind me asking are you on any treatment? I have ET platelets 1450 not on treatment at mo as asked to come off. It’s quite frustrating not knowing if I’m on this ‘list’ or not. I work on the railway and dealing with people daily. I know the NHS is stretched but I just need to know so I can manage my life.x

[Raphael_UK in reply to stevenjust]

Hi, I’m on low dose Aspirin & Pegasys 45 mcg. I have ET/MPL. I assume you must be quite young as 1450 having no treatment may not be a good idea, your health professional must have assessed you are very fit and have a low (CV) cardio vascular risk, heart attack, stroke, pulmonary embolism or clots. Platelets ideally should be below 400. Maybe that’s why you not on high risk list. Personally I would be cautious and consider I am high risk. Also I would discuss with your specialist if they are confident that you are safe without treatment. If you have been medicated with something you didn’t get on with, ask your specialist for alternatives. All the best. Raph

[stevenjust in reply to Raphael_UK]

Thanks Raphael. I was on hydroxy for around 8 years which kept my count at around 500-600. They gave me mouth ulcers, fatigue and a general feeling of lethargy. I just asked on the off chance could I come off them and they agreed. I’m 48, now have to have appts every 8 weeks instead of quarterly and have been advised if I reach 1500 then I need to consider going back on treatment. I’m at guys hospital so am under good care. Thanks for your reply.x

[mhos61 in reply to Raphael_UK]

Hi Raphael, you mention having Type 2 diabetes in one of your posts. I wonder if having ET with this comorbidity has highlighted you as vulnerable? Just a thought.

We should all know before Sunday apparently.

[Vtr1000]

I have ET plus another condition. With regards to the ET condition using my last blood test results my haematologist has said I’m not in a vulnerable group. I’m on hydroxycarbamide.

[Dazakella2010 in reply to Vtr1000]

Mpn have been included in the high risk group

[Trueblue8 in reply to Dazakella2010]

This is all very confusing and no doubt causing a great deal of stress for us all. Bloodwise is quite clear and unambiguous in that anyone with an MPN is in the high risk category. I cannot understand why some people are receiving messages and others are not?!

I'm going to wait until Monday and then contact my Haematologist for advice. I'm ET JAK2 pos, taking hydroxycarbamide and under 70.

Ian

[isimmy in reply to Trueblue8]

I'm in the same position as you regarding age, diagnosis and medication and have not had any message yet.

As you say it is really confusing and there are so many mixed messages coming through.

I am working from home and so can keep myself fairly busy. I have been going out for a brief walk each day just to get some exercise and fresh air. However, I am avoiding anywhere where I am likely to come into close contact with other people.

Continuing to work and going out for a short walk each day is enabling me to continue my normal routine, even if in a limited way and that I believe will help both my physical and mental well being.

[Trueblue8 in reply to isimmy]

Thanks for your reply. I 'grabbed the bull by the horns' this morning and emailed my consultant. He has come straight back and confirmed that as I am ET JAK2 pos, which is a blood cancer, I fall into the high risk category. I'm assuming that we will all get official notification, however, if I don't, I will still do the 12 week shielding.

From what I read on this fabulous forum, the difference of opinions from consultants is quite staggering when the advice is clear.

I hope this helps everyone

Ian

[Melanie66 in reply to Vtr1000]

Hello ... I have et and was informed by nhs that I am high risk because of condition and the hydroxycarbomide medication .... both lower immunity..... but they also say any blood condition mpn plus others ....staying home for 12 weeks.... taking one day at a time .... wishing all to come through safely ....lainie xx

[Aime]

I think it's best not to expose yourself to the virus if you can avoid it. Maz posted advice the other day and I'm sure will update if needed.

Take care, keep well Aime x😻

[Superwoman]

I got this message also.

[Kari1961]

I haven't received the 'at risk' category letter - but that doesn't mean I intend on exposing myself to Covid-19. I'm going to self isolate for 12 weeks (as I have been doing for the past 2 weeks) And when I need to go to the hospital for my check up I'll wear latex gloves and avoid coming into contact with anyone, just as I have been doing of late.

I have an appointment with my consultant at the end of April, so a few weeks away yet. I usually go to the hospital the week before to have my blood tests. But on this occaision, that's not going to happen, as I'm not going to make two round bus trips. I'm going to phone them next week to let them know that they'll have to do my bloods before the appointment, like they always used to do.

I'm PV, on Hydroxy. Plus I have high BP which I take meds for.

I'm also going to follow your "If in doubt - don't go out" way of thinking.

[Doggy1903]

Thank you , a helpful update and I am sure we are better to ere on the side of caution. Hope everyone is able to keep well and safe.

Keep in contact everyone.

[Dazakella2010]

Mpn have been included in the at risk category.

[Grumpyfairy]

I’m still very confused, I posted the other day on a different stream, as I’m ET Jac2 positive, take aspirin and hydroxy. Spoke to my consultants secretary and she said I’m not high risk. I work for the hospital, I’m self isolating at moment for two weeks. Really not sure what to do as according to Bloodwise and NHS guidelines all blood cancers are high risk. Not had a text or letter though?

[Trueblue8 in reply to Grumpyfairy]

This proves my point from earlier about the inconsistent advice from consultants. I emailed my consultant this morning and this is an extract of what he replied;

'I am sure you are aware the government has stated that all patients with a blood or bone marrow cancer are in the vulnerable group for getting severe infections with covid-19. Essential thrombocythaemia is defined as a blood cancer so would fit into this category.'

I hope this helps

All the best

Ian

[Grumpyfairy in reply to Trueblue8]

Thanks Ian. I think I’ll wait and see if I get a letter or phone call. Then speak with my consultant again, I don’t feel happy going back to work in a hospital, I’m a receptionist so have patient contact, until I have a bit more clarification as like you say it’s all so inconsistent. Regards Jackie

[Trueblue8 in reply to Grumpyfairy]

You have every reason not to be happy about going back to work in a hospital! It would be great at this worrying time to have some consistent advice from our consultants!

Good luck and stay safe.

Ian

[Loubprv Volunteer]

Hi I’m 65 have Pv and have been on Hydroxicarbamide for ten years.

No text from NHS and I’m not a bit worried. Just being sensible, staying in my own home and garden and enjoying the sunshine!

xx

[VLHB]

Hello I have Polycythaemia Vera (on Clopidogrel) , Diabetes, and other long term conditions but my GP has advised me this morning that I am not in the high risk groups - it's all very confusing

[tracey13]

Really makes you appreciate things in life with this Corona hanging about.

My husband is really fit and well his immune has always been good but we taking no chances.

Think it's a big worry for each and everyone of you.

I think mental health is suffering more at the minute .

Tracey