Coronavirus concern

[Pippa63]

I was wondering how serious this virus would be if contracted by anyone of us with an MPN We all cope with colds and various infections but this is different. I live only 4 miles from an area that a few cases have been confirmed I’m careful with hand washing and trying to not get too close to people when I go out which is not often , but im thinking of avoiding going out at all. I have ET jak positive. Am I overreacting? Anyone else feeling like this ? Thanks everyone

[clubdino]

I've been watching this whole coronavirus thing unfold and I have wondered the same. It has been said that the fact that we have a MPN means we are immunocomprised. I imagine even more so if you are currently taking medication for your MPN.

If I lived within 4 miles of some cases I would definitely limit my time in public. You are not overreacting. You are smart to be worried. I am in America and I am not close to any cases that I know of but I have been preparing for the time that I may have to limit my time outside of the house. I'm pretty stocked up on canned food, dog food, cleaning supplies and other necessities. If I'm in a store and I hear somebody coughing I immediately walk to the other end of the store...but I've always done that. And I keep hand sanitizer everywhere...in my purse, my car...if I touch anything in public that I know others have been touching I immediately put some hand sanitizer on.

Be safe and trust your gut. ❤

[Anag in reply to clubdino]

I always where surgical gloves in the supermarket and all markets. Firstly to be protected from pesticides, chemicals, etc. Then the illnesses and the BPA from the receipts. (Call me an extremist) 😂

[Helena303 in reply to Anag]

I do as well.

[Anag in reply to Helena303]

👍

[Elizka in reply to clubdino]

Why are MPN suffers as a general rule immune compromised? For instance, I have high WBC's. I would assume my immune system is strong. And I eat well, workout and have low inflammation and almost never get sick.

[piggie50 in reply to Elizka]

Hi Elizka,

I don’t think having an MPN makes us immune compromised, it is those us us that are taking drugs, Hydroxy, Rux etc.

Having said that, I take Hydroxy which is a very low dose chemotherapy and also methotrexate for RA. My white blood cells and neutrophils are abnormal but at the high end, so I don’t feel immune compromised either.

[beckyluck]

Hi, I have been staring to wonder about the effects this will have on us too. I am ET triple negative and on Hydroxy.

I am generally careful about cleaning hands, not touching my face/eyes etc anyway so am not worrying too much, however my son is (bless him) as there was a possible friend of his at school who’s brother has been tested but fortunately came back negative.

All we can do is be as careful as we normally are

Xx

[Anag]

Hi Pippa,

There are also cases a few km from my home here in Vienna. I would not take any unnecessary risks. Getting ill and what will happen thereafter depends on the immune reaction of all of us separately.

I’ve had bronchitis 40x in my life and pneumonia 3x. I guess I might be one of the unlucky ones, even though I have really worked on my immune system and it’s quite strong now. I get rid of colds in 36 hours with about 13/14g of vit c daily. Nevertheless, the swine flu almost killed me a while back. It took me 2.5 months to be able breath well again.

Please stay happy and healthy. The first is a prerequisite for the second. 😁

Anag

[Inca in reply to Anag]

Breathing is my worry Anag,I have Asthma,tho it has never stopped my active outdoor life....since on Rux I do get breathless,a different sort to asthmatical,a bit of rest ,yoga breathing usually sorts it.

Keep well ,I need your company in Vienna!!!Sally

[Anag in reply to Inca]

Hi Inca!

Yes your concerns are understandable. Asthmatic Friends of mine take salmon oil daily to keep the immune system balanced. The oil must be good. Capsules are not always to be trusted. I suggest a pin prick in the first capsule that’s taken out of a new package and then taste for freshness. Sometimes, companies put rancid oil in there. I’ve had that experience before. Nasty!

I would love to start Tai Chi on a regular basis. I belief that any form of meditation and blood flow is crucial to better health.

Are you in Vienna (Austria) or coming here?

Anag

[Inca in reply to Anag]

Oh ,if only!!!

Leaving home is not easy ,horses and dogs must be looked after by responsible people.Our German Shepherd dogs are trained to guard,so not easy for most people.They are really loving &gentle,so faithful & obedient.,with us of course,stay by me when I am unwell.

Yes ,I try to meditate,exercise for blood not too much t o get fatigued.

I live on salmon & tuna ,liberally put on good olive oil,no meat ,only good chicken.Have not seen salmon oil,must search it out.We have

Gelee Royale ,Manuka honey too.

You keep safe and well,virus has not reached our part of S W Fr yet,no doubt it will.I have several R Vs in hospitals this week and next

I wonder if they will be cancelled.

Take care Anag, Sally

[Anag in reply to Inca]

Wow Inca!

Horses! I also love dogs immensely. We have a little Havanese girl,5kg, white. We’ve trained as a therapy dog team. She’s amazing. Very easy to drop off with friends because she’s small and absolutely not a guard dog, she has more of a licker license. 😂

I eat lots of salmon. It’s the one hunter, big mouth fish that doesn’t store a lot of mercury. I won’t touch tuna. It is packed with mercury and I was poisoned with it. My thyroid is sick because of it and so is was/is my brain. I finally finished having my amalgams removed out of 11 teeth. Most were, since I was 14! I detoxed for over a year and I’m still doing that. Every month after removal was hell. Brainless with brain fog. Now it’s done and the inlays are starting next week.

Tuna:

Blue fin tuna is the worst of all. In order for it to grow 1/2 kg, it must eat 32 kg of smaller fish and it stores the mercury of those smaller fish in its meat! A blue fin tuna steak contains the amount of mercury of 6 vaccinations. The canned tuna is not as bad. They are much smaller.

My fish oil:

norsan.de/?gclid=CjwKCAiAnf...

This says €30. I get it for €20. You have to shop around. I usually buy 6 bottles. My whole family takes it.

Cheers. Stay well. Anag

[ksos]

I don't have any answers, but I've been thinking a lot about this too, and am glad you asked this. I'll be interested to see what others think. For me, I don't think you're over-reacting. Everything I've read says that if you have compromised health, which we do, take more precautions and the two things that are listed most often to make the most difference are staying away from potential contact and hand washing.

I live outside of SF where there have been confirmed cases in the wider area. I don't go out much anyway for health reasons, but still, I'm limiting my time outside more than I did before , and being very consistent about hand washing, staying away from people who are sneezing, etc.

I want to be prepared without getting panic-y -- sometimes hard with all the news coming at us. I got a flu shot before all this started, but if I hadn't, that's one thing I'd do. I've also ordered enough HU for three months just so I don't have to worry about it. If confirmed cases come closer, I'll likely just stay home until things get better.

This article on the Cure site was helpful. It's targeted to people who have cancer : curetoday.com/articles/4-th...

Hang in there and take good care,

Kim

[Poppy6060]

Hi it is all getting worrying I am due to go a local theatre Sunday with a friend it was a Xmas present and I am worried about going and its in Essex were someone is positive but I don’t wont to stay at home all the time and I work with the public all we can do is our best and keep washing our hands wonder what the hospitals would say keep well Poppy

[bordeauxgirl]

Hi all, Now you can call me crazy but here's my theory, I have PV with Jak2 pos.

I have been on Hydroxycarbamide twice daily for nearly 5 years and I have not had one cold or flu episode or chesty cough in all that time ,even though before I had a few bouts of Asthma that sent me to hospital. All my family and some friends have had quite nasty bouts of all of the above, but I have never contracted any of these things. Even cold sores keep their distance. Maybe, just maybe, we are more protected by our special drugs than most. I am touching wood as I write and I'm ever the optimist ,so here is Mrs Crazy signing off in hope for us all .

[Inca in reply to bordeauxgirl]

I would love to think that you are right!

Only I just read the Maz post,it says that those taking Rux are at more risk!!

That's me,and my consultant just augmented my dose!!!!

Keep well,actually I don't get colds either like many of my friends......I do have asthma but it is well controlled and has not affected my life style.

Very Best to you and keep safe.

[Anag in reply to bordeauxgirl]

Sometimes drugs work in mysterious ways. After my husband had chemo for his cancer, mosquitos flew 30cm around him for about 3 years! Not a single bite! 😂

[bordeauxgirl in reply to Anag]

Same as me , just been to Australia over Christmas and the last time I got bites galore , this time NONE , the little buzzards kept their distance. Once I got to NZ a week later my sister looked like the Mr Blooby , pink bites all over. Me , NONE.

[Anag in reply to bordeauxgirl]

😁 I think you’re taking something other than me. I’m on Anagrelide and was on Jeju island S. Korea last July. The mosquitos got me well. Nothing a bit of citronella can’t fix.

[Lifam]

I don't think we are overreacting at all. I also in a dangerous group myself as I just turned 70 and my asthma is bad. Supermarkets trolleys handles are the worse as there are many hands touching it everyday, some of our big supermarkets here provide trolley wipe, I also bought some cheap plastic disposal gloves when go grocery shopping, hand gel in my bags and car, and I wear surgical masks when in places with lots of people, especially regular visits to my GP and my hospital appointment. Make sure my hands are clean all the time. It's terrible we have to be aware of so many things but better be safe than sorry.

[Anag in reply to Lifam]

Hi Lifam,

You’re so right. It’s not a truly comfortable life anymore. The supermarket is a dangerous place. I feel sorry for the people who work there. The world is so toxic, but too much sterilization is also not great for us. Our hands also have a microbiom that helps keep us healthy and constant hand disinfection kills those good bacterias. Surgical gloves are fabulous for shopping. Surgical masks (fine particle) should be FFP1 or FFP2, else they don’t really work. The simple masks are ok if we are trying to protect others from our germs.

Keep well! Anag.

[Lifam in reply to Anag]

I agree with you

Still ordinary masks also protect us from people sneezing and coughing even from a distance, as droplets from it can travel quite a distance. People need going to work everyday especially on public transport, most can't afford the expensive masks day in and day out, ordinary level 1 or 2 can still protect us unless we were in a danger zone.

ONLY IF everyone is responsible for their own hygiene in the public will help a lot, sadly not everyone thinks and act the way we do.

[Anag in reply to Lifam]

No. Not all are courteous of others!! Simple masks allow droplets to be breathed in through the sides because they don’t form to the face. They are one use only. The more expensive ones cost a bit more. €6-8 instead of €1, but are reusable. In my career as an opera singer, I always used a thin woven scarf wrapped a few times around my nose. That was really useful.

[Lifam in reply to Anag]

I am fine for the more expensive one as I am retired and not going to work everyday. I've thought they are really can be reusable, but when I found how to reuse it again and again I realised it's not really reusable as what it said unless you put an ordinary masks on top of it. Anyway we have to be extremely sensible for our conditions.

[Dovme in reply to Anag]

I think surgical masks stop you from self infection ie passing stuff from your hands to your mouth and nose. We all constantly touch our faces it’s very difficult to not do

Handwashing is not something you can do constantly if your outside. Masks l think act as a barrier.

[MPNBlog]

A good question Pippa.

Maz, Is it possible for you to get an opinion about this from Professor Harrison, given the importance to us all. Perhaps also in regards to what country you live in, I am in Australia.

Also, a previous post had a link to a clinical trials for MERS that used that Pegasys suggesting that it might have an antiviral effect, and asking if an MPN patient became infected with Coronavirus might they increase their dose of Pegasys. Might Prof Harrison also be able to comment on that please?

Many thanks.

[Mazcd Partner MPNVoice in reply to MPNBlog]

Hi, the post you are referring to had a link to a paper reporting on a study which was conducted in 2014. You are advised to follow the advice issued by the NHS and the government. Maz

[Lorrmac]

Hi Pippa63,

I too have concerns regarding your question on Coronavirus. I have ET jak pos, had about three years. I’m due to take a trip to Paris next week on Eurostar. Wasn’t overly concerned until I recently noticed some of main attractions have been closed in Paris because of risk of spreading.

I have emailed my hemo nurse to ask for advice. Waiting on reply.

The problem is, if I cancel now, I shall lose money.

Not sure what to do.

Maz, is it possible to get some advise from Professor Harrison.

Many thanks

Lorrmacd

[Ebot in reply to Lorrmac]

See my reply below on MPNs / COVID-19. We’re in Barcelona right now for a short break. Can’t lie, I’m a bit concerned as we hit the tourist trail. Ended up in the metro in rush hour yesterday which we wouldn’t have done given the option (we were on a ‘walking tour’’!). But the sky is blue and the city is amazing so going to go out and grab the experience. Hand gel at the ready!

[Spirit123]

I have an appointment with the specialist next week.I’ll be asking questions about how this may effect us.jak2+ ET. Hydroxy and aspirin. I also have bronchiectasis. It is a concern but hopefully we won’t catch it. Stay well everyone.

[Ebot]

I asked this very question last week up at Guy’s Hospital - well it was more general. “If we have ET / PV and are on Hydroxy are we more susceptible to infection?” And the answer was ... not really. Maybe a bit.

If you have asthma / other chest conditions / a history of chest infections or are elderly you are more at risk should you contract COVID-19. Ditto conditions which make you seriously immunocompromised (not ET / PV).

Hand washing, hand washing, hand washing is the advice. Do not pick your nose, touch your lips or rub your eyes - unless you have clean hands!! Masks are of no use whatsoever - unless you are sick and want to protect others from your germs. So avoid people wearing masks!!!

My generally gung-ho other half has asthma and lungs compromised by sarcoidosis scarring. My elderly mother-in-law has COPD. Much more concerned about them. We’re becoming more circumspect about using public transport in rush hour etc. But we need to keep on living. Bring on the hand gel!!

[Lorrmac in reply to Ebot]

Thanks Ebot,

Most helpful. I feel if I’m armed with as much information as possible, before I make my decision to cancel or go ahead with my trip.

Lorrmac

[Mazcd Partner MPNVoice]

reply to you all, I have just posted advice from the medical team regarding Coronavirus,

healthunlocked.com/mpnvoice...

best wishes, Maz

[Melanie66]

Hello 👋... I’m worrying too.... mainly because of our medication(hydra) lowering our immunity...all of the medications for mpn,s,affects our immunity... .I’m jak 2 .. ET .. but all we can do ....is what your already doing .... keep vigilant... wash hands thoroughly...the virus will peak soon and then weaken .....I just asked my son if he would like to add anything to this message .......... just chill .... that would be his answer to Armageddon coming also....lol xxxxLainie .

[Pippa63 in reply to Melanie66]

Thankyou

[Pte82]

Research Coronavirus and selenium. While on the subject of selenium research it's effect on MPN.

[Loubprv Volunteer]

Hi Pippa,

I understand where you re coming from, but, Personally? Mass hysteria and media hype to save the NHS being overburdened. So my gp cousin says anyway.

And let’s face it - the media just love stirring it up.

I shall be careful but have no intention of staying in my home for months on end. I have PV and take hydroxi. I m 66. Life’s too jolly short to worry.

So I don t intend to.

This is decimating the tourism industry in the Lakes. People cancelling for no reason “ we don t want to travel”

What? By car to one of the cleanest counties in the uk?

Madness.

It’s the time the PM got himself on the news and told everyone to stop panicking.

Americans - sorry last post - are the worst. We have a hotel and a business who host a company from the US called Elderhostel. If someone’s stabbed in London - they cancel. If there’s a hint of anything from a bomb threat to a bad cold - they cancel.

Take care I say. But live.

Louise

X

[Pippa63 in reply to Loubprv]

Thankyou Louise. I tend to agree about the mass hysteria. There is panic buying in my local supermarket, empty shelves. Ridiculous ! I was unsure about how the virus would affect us being on hydroxy ( I have ET) but Maz posted advice and I feel better about it . I will still be careful and not get in crowded places but I’m not so worried by it as I was. Take care

Pippa

[Loubprv Volunteer in reply to Pippa63]

You too xx

[Turfbeg]

I too am concerned and have been of thinking of contacting my "specialist nurse" who said she would have told me to stop taking hydroxicarbamide whilst I was taking medication to reduce the symptoms of shingles. This advice seems to suggest that hydroxicarbamide does suppress our immune systems. I have polycaethaemia and ET and take aspirin also. I should add that my specialist nurse hasn't told me whether she is MPN trained so might only be a haematology/oncology nurse.