cancerhealth.com The article is called "What people with cancer need to know about the Coronavirus"
Worrying article but I think you all need to rea... - MPN Voice
Worrying article but I think you all need to read this
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jillydabrat
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62 Replies
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Hi, be careful as there seems to be a lot of scaremongering in the press. Maz posted advice yesterday I think which i would trust. Kindest regards Aime xx😻😻
This is a medical paper Aime, so I believe the figures they are quoting xx
We need to remember that not all cancers and treatments are equal, and that we all need to keep watching the NHS websites.
Please be aware that NHS providers will be increasingly busy.
Balance risk vs benefit of attending your clinic appointments. Generally people are not brought back needlessly.
This article mainly concerned people receiving chemotherapy, chemotherapy drugs which resulted in weakened immune systems. All relevant to people using Hydroxycarbomide.
Jilly, can you provide the link to the article, I have read an article on the cancerhealth.com website and I can't see where it is referring to people using Ruxolitinib, maybe I am looking at the wrong website/article? Thanks, Maz
cancerhealth.com/article/pe...
thank you, it is the article I read, but I can't see where in the article they refer to Ruxolitinib, I have read it 3 times now and can't see where it is named in the article.
I am sorry Maz, I have read so many articles about this today that my head is spinning. I think I have crossed my wires. I have taken the reference to Ruxolitnib out of my posts. The article makes interesting reading though.
Thank you Jilly for clarifying that for me and everyone, I just didn't want anyone to be confused or alarmed. It is a very worrying time for everyone around the world, but especially those who are already vulnerable with health conditions. Maz
From what I have been reading it seems that people taking Ruxolitinib are at greater risk of complications if they contract the virus. Dr Reuben Mesa was on Facebook yesterday advising people with low blood counts or having had transplants to be extra cautious. He did also say that the fact of having an MPN does not necessarily make you more susceptible to catching the virus but it seems to be how well your body is equipped to deal with the virus if you contract it.
I really don't get this virus at all.
Seems random people catch it but not the whole family . They not interviewing people whove had it.
Then I read a couple in Cardiff self isolated as they tested positive in Tenerife and they both said they had no symptoms at all!!
Then companies are blaming this virus for losing business money is getting wiped off the stock markets .
All the talks about new trade deals have gone quiet!!
There's far too much scaremongering going on! .
We went on a cruise last year my husband got norovirus and there was hundreds who caught it too.
We were worried about his medication as he couldn't keep anything down for two days.
This virus doesn't seem to be wiping lots of people out in the same area if that makes sense.
We are just hand sanitising all the time when we are out. I don't think there's much more we can do.
Tracey
Hi.
Cancer Health is an on-line health magazine not a 'medical paper' with articles written by technical journalists not doctors.
The paper is somewhat misleading as it implies that those with cancer are at greater risk from the Corona virus. I am not covinced this is true. Older people who contract the Corona virus are at greater risk but these are the people most likely to have cancer.
Finding that a greater than expected number of deaths involve people who have cancer doesn't necessarily mean that people with cancer are at greater risk. It just means that people with cancer are more likely to be older, and have other health issues that make them more vulnerable.
Statistics can be misleading, health statistics can be misleading and alarming.
Like Maz I can't see any reference to Ruxolitinib.
Finally I think that the strained look on the government/health spokesmen is not because they are hiding the facts, its the strain of making sure they are absolutely clear in what they are saying and recommending . Leaving no room for confusion.
Personally I thinking the Chief Medical Officer is doing a great job in difficult circumstances.
I do apologise, I thought it was a medical forum. If you rereading my post you will see that I took the reference to Ruxolitnib off before you responded. I feel like I am being beaten by a stick for posting about an article that could be relevant to all of us.
There is a lot of concern and anxiety about COVID-19 and what it means for those of us with MPNs. The whole point of this forum is to express concerns, fears, and anxiety so we can get support and sort out what-is-what. So - no need to apologize. This is what we are all here for.
I think a balanced and judicious response to the risks is what is needed. The actual risks of contracting this virus and the implications if you do get it will actually vary from person to person. Some of us do have compromised immune systems due to the MPN or the chemotherapies, but not all do. We also have non-MPN related factors that may influence our risks: age, other infections, other medical conditions. Taking all of that into account, we each have to take reasonable precautions to manage our risks. There is plenty of good advice already published on how to do this which has been previously provided.
On a lighter note, my granddaughter just had a lesson at school covering these topics and learned these three things: wash your hands, do not touch your face, and do not lick people. I think the latter is particularly good advice - so to all my MPN brothers and sisters - please do not lick people!
More seriously, we do all need to take reasonable precautions as this virus plays itself out. However, we cannot allow ourselves to live in fear. "Fear is the mind killer" as Frank Herbert said. There are always going to be risks we have to face. Sometimes we just need to "suck it up" and face our fears rather than letting them rule our lives. Having said that, a modicum of due caution is certainly in order in dealing with COVID-19.
All the best to all y"alI and hope you all stay well.
lol thank you for lightening my day with the licking comment. I can just imagine meeting someone and saying "Sorry I am not shaking hands at the moment and for goodness sake please keep your tongue to yourself"
I’m sorry you’re feeling attacked. We are all learning every day. It’s a very stressful time for everyone.
I found your link interesting.
Let’s all remember to do something which makes us feel happy and less stressed. Remember self-care is under our control.
I like walking in the fresh air, listening to music and watching uplifting movies. Sending a stress free evening to everyone xx
Thank you Eleanor. I have a very dear friend who is a professional dog photographer. She has very kindly given me permission to use any of her photographs as I am trying to teach myself to paint, focusing on dog portraits. Thanks to her I have a fistful of photographs that I can blissfully while away the hours painting. We are also waiting for some good weather to take some drives out into the beautiful Yorkshire countryside with our cameras. Although very scared I have no intention of stopping my life, just not having so many people entering it and certainly nobody who wants to lick 👅 me 😂
You are right to be concerned about Corona virus and I fully support your ideas about hospital appointments that could be done by telephone. We all need to do what is sensible to help protect ourselves and others.
My concern is that the article you posted presents a distorted view of the available information and could create unnecessary anxiety for members of the forum. I was trying to present a more balanced view.
I did not intend to attack anyone.
I don’t understand what is distorted. The article is trying to inform people who are more vulnerable to be more cautious about their environment. Who says what percentages are correct? Nobody knows, but I think it’s far more than the government are letting us believe. If anybody wants me to remove the post I will but as stated earlier this is a forum where we can share information, experiences and anything else that is relevant to our conditions. I am not going to face this virus blinkered, I want as much information as I can get. If I am not allowed to post on this then I will leave the community, which would be very upsetting because I have learnt so much on here and offered support to so many when I can. The first death from the virus happened today to a poor woman who had other significant health problems. I am going to do everything I can not to be the same as her. I thought I was doing everyone a favour posting the article but obviously not. I won’t post anything else about it if its upsetting anybody.
I am not upset, nobody has suggsted you shouldn't have posted the article and I don't want anyone to leave the forum that doesn't want to.
The article does contain some useful suggestions and advice but some of the numbers presented are very crude and misleading.
The original chinese study on which the article is based is primarily an exercise in collating lots of health statistics and summarising them.
The scientists have lumped all cancer suffers together, whatever type of cancer they have, whatever age they are, whatever treatment they are having and whatever other conditions they have. This highlights categories of people who are at higher risk but simply saying that people with cancer had an X% risk of dying if they contract the virus is not helpful. It doesn't mean that everyone with cancer has that level of risk.
A crude statistic is bad information that can cause unnecessary anxiety for patients and their families/ friends and the journalists working on the on-line magazine should know better.
It's also worth remembering that health statistics from China are not directly comparable to those from the UK or elsewhere.
Taking the basic precautions to protect against infection, eating and drinking well, taking appropriate exercise and being kind to one another are what's needed.
All medical articles, whatever their source, need to be read with at least one sceptical eye. Always ask yourself how the work/ research/article is being paid for.
Time for bed!
Hi Jilly. Please don’t feel you are being beaten by a stick.
You posted an article that you felt would be informative and of interest to us on our forum. I did read it and it didn’t scare me. The situation is very much like the Brexit debate , ie you are on one side or the other. Much like that debate, people are very divided, we have spoken to some people who say it’s being blown out proportion , then we have a thirty something neighbour who is worried sick.... ....I think in this case we must inform ourselves as well as we can from different sources and draw up our own plan of what we do and don’t do. The authorities have really not discovered a lot about the spread of this virus.....so all we can do is be our own decider , if you want to self isolate do so, if you choose to go out be cautious.... , we were going to the cinema this week but thought we would give it a miss for a while.....others would say don’t fuss no problem. I think some people are panicking but if they want to have dozens of toilet rolls stored, good luck.
I have always used hand sanitizer much to the amusement of some friends, that’s just my normal precaution. Of course it’s sold out every where near us. But you can make your own quite easily.
My six week consultation is next week, this morning I emailed my consultants secretary and asked if I could have a telephone consultation
Not because I’m afraid of catching any thing there just don’t want to take the chance of taking anything IN to the unit.
So we have to be sensible and take the advice given.
You add a lot to the forum Jilly, so just stay where you are and keep posting.
Keep well all.
Regards Sandy xx
LoubprvVolunteer
Oh lord. You know, as Maz says there’s SO much scaremongering going on.
We as mpners take a very MILD chemo drug.
I think when papers of this ilk are written re cancer, they really apply to cancers that are a whole lot more serious than ours, where poorly folk are being zapped with really strong chemo.
Sites like health unlocked are good, but they do serve as frighteners for newly diagnosed patients, and those who are disposed to being anxious.
What are we supposed to do, lock the doors and not go anywhere for 6 months?
My cousin who is a gp says the media are peddling mass hysteria. I for one am certainly NOT going to lose any sleep over this.
Yes we can follow the hand washing routine, wear gloves in the supermarket if you must, but let’s keep calm and carry on shall we?
Louise
x
Amen to that! This mass hysteria,created in large by the media is making this worse. In my local tesco store,people have been panic buying all week! I've witnessed for myself the appalling behaviour exhibited to anyone looking oriental. It is not the virus itself that will cause the biggest problem if people do not take a sensible approach to this but the potential flare ups, ie, people fighting in supermarkets, people being attacked and an NHS unable to cope because of timewasters phoning they're Gp's surgery or 111 everytime they have a little sniffle! Please,as lou says ' KEEP CALM and CARRY ON! Atb, tina.🤗
Gosh guys let’s get back to what this forum is about - supporting one another, through thick and thin. Of course we all worry about our health and reports in the press and elsewhere. Jilly, of course you have a right like everyone else to post your worries which were answered very quickly by Maz. Surely no harm done and please don’t stop posting as you obviously need support just now, as we all do when there are new things thrown at us.
E hugs to everyone. Keep washing your hands, no licking people though - does that apply to dogs too? No seriously, keep well, keep things in perspective and keep friends on this forum.
Kindest regards Aime xx😻😻
Meant to say I think we should all follow Eleanor’s brilliant advice above. Love to you all, Aime xx😻😻
All I know is that my hospital consultant told me before this virus appeared that if I ever had a temperature I was to go straight to A & E because of being on Hydroxy and my suppressed immune system so, obviously, there is cause for concern with ANY infection.
This came to me from MPN voice yesterday.
Coronavirus (COVID-19) Advice for people with MPNs
from the Haematology Team at Guy’s & St Thomas’ Hospital, London
Everyone should follow standard NHS advice, which can be found on the NHS website here…
Further advice can also be found on the Gov.UK website, this link will redirect you:
You are advised to check these regularly for updates. TV, radio, newspapers and other news outlets will also be issuing news daily.
For those of you living outside the UK, your country’s Government and Health Authority will have similar public information websites with information relevant to your country, you are advised to check these regularly and follow the advice.
We do see a small increase of minor infections in patients with MPN but severe infections are rare. We do not suspect that this will be different with COVID 19. Probably the bigger risk would be for patients taking Ruxolitinib (Jakavi), this is because Ruxolitinib is a slightly more powerful immunosuppressing drug, but overall it improves the patient’s fitness, which is important to bear in mind.
However we would urge patients not to stop taking their medication and to ensure they have plenty of supply.
Lynn
Certainly more in depth than what we have been told. Thank you
Hi Jilly
I hope you are feeling abit better this morning . As Aime said this forum is here for us all to educate , help and support one another . Although I don't write on the forum much, I do read all the posts and have learned a whole lot from doing so . Tbh your post has opened up an interesting and informative discussion about MPNs and this bloomin' coronavirus and this is what the forum is about . Please don't feel as though you want to leave the forum - you contribute a whole lot as does everyone who writes on it . Sometimes we hear or read something about our weird and wonderful MPNs and it's good to put it out there and then get excellent and up to date info and responses from our lovely Maz and other members . With PV myself I find it so lovely to be amongst people who are so clued up about and understand our rare condition . I often find when meeting new health care professionals for other conditions , I end up spending a major part of my apt explaining what Polycythemia is ! 🤣😂
I hope you are feeling more comfortable about your initial post and remember - it started a very informative discussion👍 We all know that Maz keeps her lovely eyes on what is posted and will always check that anything we post is both accurate and up to date .
Hope you are keeping well 😘
I am going into hospital in the next week or so - awaiting myboperation date for a right sided hemi-colectomy . A malignant tumour was found in my right ascending colon following bowel screening - Thank goodness for the screening programme - as I have no symptoms I would have had no idea that I had bowel cancer !
So my message is - Everyone be vigilant and attend every screening programme that is offered!!
We are sure they have caught it early and my CT scan was reassuring of no spread to other organs which is a positive . I must admit I will be glad when it's over and would really appreciate any advice or reassurance from any of you lovely pepes with an MPN who have had surgery - I had a DVT and PE 4 years ago before I got my PV diagnosis 3 years ago so, with that history , my PV and being on warfarin and Ruxo they are being extra careful with me and liaising with my lovely Haematologist .
Wish me luck !
lots of love to everyone
Dianne xxx
Hi Diane, I can’t offer any advice on what you are going through but I do send you all my love and best wishes. Thank goodness they caught it early. Although horrendous it does sound positive and your mind set seems excellent so kick this horrible thing in the teeth and come back to us soon. Take care my lovely xxxx
Thank you Jilly
Will do . I've been to my pre-assessmet clinics and see the consultant Surgeon again on Mo day when hopefully he will have the date for my op. I'm at what I think is your local hospital James Cook
xxx
lots of love
xxx
Yes, it's James Cooke a great great hospital. Will be thinking of you xx
Sorry to hear of your trouble and forthcoming operation. So glad they found it quickly. Thoughts are with you. James Cook Haematology is my hospital too. I have ET JAK2+. I'm in Marske. Good luck with your op! Thoughts and prayers, Fran
Thank you so much Fran xx
We often walk Barney our cheeky little miniature poodle pup on your lovely beach at Marske, so if you see a couple chasing around after a now, not so little , black half poodle and we suspect half kangaroo puppy!! 🤣😂 - it's probably us !! 😂🤣 Barney is 8 months old now and is just so much fun . He loves the beach and meeting other other woofs but often forgets all his
" recall" training when there are lots of lovely other woofers to play and run around with !!
Can't wait to get my op over with and get back on our walks with Barney !
Hope you ate keeping well
lots of love
Dianne
xxxxx xxx
Hi Dianne, your Pup Barney sound a lot of fun and I'm sure he loves Marske beach. We tend not to walk on the beach so much these days as my husband doesn't like sand in his shoes! We don't have a dog so our walks are usually in Saltburn either right through the woods or down at the bottom prom and pier. If we're ever on the beach, I'll be looking for a couple with a tall black half poodle! Take care and very best of wishes for an easy, trouble free operation. Love, Fran xxxx
Hi Dianne, wishing you luck plus loads of E hugs. Kindest regards Aime xx😻😻
Thank you so much Aime - hope you are keeping well too - you are always such a support to everyone and deserve nothing but the best
Lots of love
Dianne
xxxxxxx
Going through some ups and downs just now, being tested now for a couple of autoimmune disorders other than sjogrens syndrome and they've also found a heart murmur which I have to speak to my gp about. Theres always something, isn't there. So glad your C hasnt spread and hope your op is soon so less waiting. Kindest regards Aime xx❤❤😻😻
Hope you’re ok Aime. 🥰🤞🏻
Thank you Judy. I’ll feel better once I see my GP on 16th just so I can talk through possibilities with him but it does depend on blood results which will take about 2 weeks, so there’s no point wasting energy worrying about things which may never happen. My hubby is not good at discussing my medical issues but I don’t blame him because there’s always something else wrong!
But it could be worse so just on the old Merry go round just now, hopefully it stops soon. Ehugs sent, hope you’re ok.
Kindest regards Aime xx😻😻
The info about Ruxolitinib and Corona Virus came from the MPN Voice website. It stated that People on Ruxolitinib were slightly immunocomprimised but this is offset by the benefits of the drug, including overall fitness. They stressed that it was important to continue taking all medication
Thank you, I read so many articles yesterday I forgot where I had seen it xx
No matter what anyone says I am scared. I'm high risk due to age. I stayed in for three days and depression was setting in causing insomnia and imagining symptoms. I couldn't take it any more so.I went to the gym last night. There were antiseptic wipes and sprays every where. I've got disposable medical gloves and a a mask effective against Corona virus.
On Monday I have to go to the hospital for a blood test. It's in the centre of London which will involve buses and tubes unless I take a taxi which will cost £40 return. All my shopping is online now.
It is scary no matter how many people try to sugar coat it. I think people who are not concerned can be the most dangerous. I am sure everyone on here follows the advice of hand washing, hand gel, tissues etc, but there are those who think they are totally invincible and take no precautions. These are the dangerous ones. People say masks are no good but when someone coughs or sneezes their droplets of fluid over you I am sure a mask must offer protection from inhaling someone else's bodily fluid. I am pro mask, always have been so you protect yourself with yours.
We spent last weekend bulk cooking soups and stews for the freezer. We have a stock of canned meals and our dogs have a good supply of frozen chicken in the freezer (yes they are spoilt).
I have lots of wool to crochet and knit and lots of painting supplies so I can carry on with my passion of painting dogs.
Luckily I am quite happy saying at home.
I just pray that you all keep safe and we'll. Good luck at the hospital Lucy. I am sure you will be fine xx
It's great to learn everything from all of you, that really helps. I am in a dangerous age group regarding getting infected by Coronavirus. I have just turned 70, on HU and I have asthma. I personal think that being on chemo medication might lower my immune system anyway and if I am not careful I can easily get infections of some sorts even without Coronavirus, so I just follow what professionals advice, wash hands often, wear a mask if I need to, avoid going to crowded places, I use disposal gloves when using supermarket trolleys etc. I'll be careful but I also want to live life as normal.
Hi Jill, you were right to post the article and please don't think you were being shouted down. We all need to know as much as possible about this virus even if we don't take all of it we read as authentic. Please don't take yourself from this group. You're too valuable! xx Fran
Thank you for the lovely post Fran.
All I want is for everyone on here to be as safe as possible. So many people on here have got me through some rough times and given me so much advice when I needed it.
I am dreading that first post saying “I have the virus”. My biggest fear is the day I have to decide to stop visiting my mum at her residential home, for her safety not mine. She is 96 and I am scared to death that someone brings it in to her home.
There has been many outbreaks of various flu, swine flu bird flu etc., but this seems different. The Government has never assembled Cobra or talked of bringing the army in before. I think there is a lot we are not being told in order that people panic.
At first I thought what will be, will be but this thing is spreading to fast not to be scared now.
I just pray that you are all kept safe.
Take care my lovely
Jill xxxxx
Yes, I worry about the steps the Government are taking this time when they haven't in the past with the other viruses. Can only think the others didn't affect such enormous numbers than this one, well just have to try not to worry and keep hoping. I sympathise with your decision about visiting your Mum. Take care and keep well. Franxxxx
Hi Jill, I attended an appointment at my nearest major hospital yesterday and expected extra hand washing stations, notices, etc but there wasn’t a single thing. I know there has been a couple of positive cases in the north east of Scotland and this is the main hospital so I take it if they’re not over worried, maybe there is too much scaremongering.
You sound like you’re very organised and ready for anything so you must take comfort from that. I may be wrong but personally I can’t believe how irresponsible the press have been and reports have incited panic buying and anxiety.
Keep in touch, keep posting and enjoy a peaceful time with your painting, dogs and crochet. You are so talented. E hugs included.
Kindest regards Aime xx😻😻
Hi Aime, I only watch news at 10, I don't buy any newspapers. What scared me was listening to the Chief Medical Officer admit that the virus could spread around the country so much that they may have to just let it run its course and basically count the casualties afterwards. They don't know if they can make a vaccine but if they can it will be at least a year. I haven't heard what the number of infected people are today but we are into triple figures in just over a week. If it was a case of avoiding people with flu symptoms it would be a bit easier but there are a number of people out there who show no symptoms at all! How do you avoid them? If people would just wash their hands and follow the NHS guidelines it would be great but over 30% of people don't even wash their hands after going to the toilet! What hope have we got of asking them to follow NHS guidelines?
I am happy at home but when or if I have to sit in the cramped waiting room at the hospital then I will wear a mask and take my own hand sanitizer just incase.
Take care
Jill
x
I have just read that Iran has had it's highest tally of new infections with 1,000 people being tested positive in a 24 hour period. The UK total is now at 206 and the elderly are going to be told not to go out.
• in reply tojillydabrat
The new infection numbers have gone down in China 100 in one day and Japan Taiwan have fewer numbers then France and Germany
I also I read that they are expecting it to peak in Europe by Easter. So hopefully we will mimic what’s happening in Asia with numbers of new infections dropping.
jillydabrat• in reply to
That would be fantastic, let's keep our fingers crossed x
The eldery are not going to be told not to go out. The premier leauge and Government are considering banning over 70's at football stadiums. I stress this would only be done if the situation got progressively worse than it is now. Atb,tina.
If you look on MSN news you will see the headline
Thats if we enter next stage of the COVID-19, the government might suggest it. The media is stoking this and have a lot to answer for, this is causing all the panic buying. Someone who works at our local Hospital told me, patients and visitors going home are now stealing the hand sanitizers from the sides of hospital beds and taking them home with them. Makes me wonder what they washed their hands with before? or even if they bothered. Atb,tina.
That's terrible. Washing your hands is better anyway. When I had my last surgery I watched the doctors doing their rounds and there was only 1 who used the hand sanitizer after examining their patients. I was pretty horrified at that.
Hi Jilly,
I’ve known so many cancer patients in my life (including my husband, friends and father) and as long as they are on chemo (chemo that works more aggressively than ours) and also after the therapy was over, they always had to take precautions not to get sick. I went to visit a friend of mine, who was having radiation for leukaemia who was isolating herself and when she heard me clearing my throat (I was 20 and thought nothing of this) she asked if I was sick. I said that I felt a little something in my throat. Well, she threw me out of the house telling me a virus could kill her because she was already so weak. Yes there are people in this situation. I’m a realist. I would think that the vast majority of us MPNers are definitely NOT in that category.
I personally have a much stronger immune system at 55, 2.5 years after my diagnosis, than I did at 35. I’ve been detoxing, getting rid of all environmental toxins that I can from my home cosmetics, foods, and I’ve been healing my autoimmune illnesses such as hashimoto, histamine intolerance, eczema, etc. By changing my diet. I have gotten rid of 3 colds in the past 3 years within 36 hours with natural methods. Mind you, I’ve had bronchitis at least 30 times in my life, pneumonia 3 times. I almost didn’t make it through the swine flu, BUT...
I’m now not afraid of this virus, because of what I mentioned above, because I am careful and because in Austria, we are getting very logical news that makes sense and we are taking precautions and remain calm. We are well guided as to what we should do to stay healthy and safe. We just have to comply.
All I’ve read above is good information and opinions. I have sometimes felt attacked on this page for expressing an opinion or even stating facts from my doctors. I also felt like not writing again, but why shouldn’t I? Fact is, some people misinterpret articles and studies. Every one of us is wearing another set of glasses and we have our own experiences and therefore our own set of sensitivities and reactions. We shouldn’t have to keep our thoughts and ideas to ourselves because one or two people might not be happy about it. It’s not possible to please or protect everyone. i was also sensitive, for the first months after my diagnosis and reading something scared me, but it was the truth and I had to deal with it and I did.
Bottom line: It is important for us to support and care for each other and not be afraid to express our opinions and fears and have open, constructive discussions. I feel like the folks on this site are an extension to my own family: a treasure. Just reading everyone’s posts warms my heart, gives me valuable information and keeps me sane and happy. I pray this will continue. Thanks for posting Jilly.
Stay healthy. 🙂
Anag
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