Hi everyone…. Credible research and my hematologist state that the covid vaccines may not work well, if at all, for people with blood cancers (I have PV with portal hypertension-enlarged spleen, on hydroxyurea, etc)…. and other MPN’s but being vaccinated is better then nothing….
I’ve had 2 doses and booster coming up …. But I am still working from home because I will not go back to the office because there are a few walking around with no mask and really beleive that because they’re vaccinated, they won’t get covid and pass it on. 😳. And my hematologist also still recommends that if I could, to work from home.
And I’m still isolating and staying away from groups because I DO NOT want to risk dying trying to breathe!! We’ve had family members and friends with mild to severe covid and one passed away and another with resulting brain damage… and a couple long haulers …. So I do not want to play Russian roulette…
SO are any of you still isolating and being extremely careful especially with this delta variant???And if so are you getting b.s. from some people??? I am tired of people having a covid opinion when they know nothing about MPN’s.
I had my antibodies tested before my 3rd vaccine and I did have antibodies. I always have low lymphocytes, so I was worried my response would be poor. I'm still very careful, but I'm married to a physician and have a teenager in high school, so I can't mitigate my risk as much as I'd like. The mask mandate at my daughter's school ends in a week as our caseloads are below the threshold set by board and I'm not thrilled about that.
Lena70... thanks for your response ... I have a hard time mitigating my risks also because my husband goes to the office and goes out to see clients so every time he comes home I get back into my anxiety mode ... but as far as antibodies ... I've had 2 doctors and a also read reports that have all said that the antibody test is not really accurate unless you've had the virus, which I have not thankfully ... also my doctor said that having the test would not help me as far as what the results would say because my risk is still the same regardless.But yes your right about the mask mandates ... I would really prefer that it continues till at least the winter season is over .... I'm in Ontario, Canada.
Keiks, I see that you are in Canada, so vaccination procedure may differ from ours in the UK, but the Blood Cancer charity has issued information (which Maz has previously posted in this group) that we should have a 3rd primary Covid jab (preferably of the Pfizer vaccine) before receiving our boosters…is this something that would be available to you? It is recommended for us because we are immuno-suppressed and I have seen people post their antibody results and they have certainly shout up after having their 3rd a primary. I know we can still catch Covid but anything that can help to keep us out of hospital 🤞
I have MF and am on Ruxolitinib so I am being extremely careful. I go out for coffee if I can sit outside and I will go into shops if they are practically empty. I still go to church but most people there are very happy to social distance.
Hi. Don't know if you've seen my posts but hubby and I have both tested positive for covid. Myself having 3 full vaccines. We have both been so poorly. We had our grandaughter stop overnight. She was negative on the morning she arrived but fell poorly the day after and tested positive. For all those people who think it has gone away is very sadly mistaken. Our family are devastated to think we have caught it after shielding and being so careful. Grandaughter is really upset because she thinks she's made nannie and grandad poorly. They all now know how serious it still is. Please all keep yourselves protected.
Poly2 ... exactly right and I am so sorry you've all had to suffer through that .. I hope that you all recover fully... people just don't get the full scope of what this virus can do especially to people like us who have medical issues. We try to do everything possible to keep ourselves safe but it doesn't always go our way. And as I said its not a virus we want to risk getting but we just don't know. Its very scary. Thanks for posting your experience again and also again, I wish you all a full recovery!!
Hi BuckskinAsia ....I'm on hydroxyurea... that's the most relevant one as far as being immune compromised... chemo drugs will strip your immune system ... I also take blood pressure meds; daily low dose aspirin; nexium (acid reflux).
Hi. I also have a separate disease which means I produce few if any antibodies to the vaccine. And I was told originally that blood cancer patients had about a 48% chance of dying if they caught Covid. That might be less now with monoclonal antibodies. But to answer your question, yes, it’s very disturbing when people act like I’m being foolish or overly dramatic by continuing the strict Covid protections of masking , physical distance etc. And they shouldn’t because too many fully vaccinated people are catching Covid & having bad cases. The odds are much less of serious illness or death but they still exist. Katie
It is such a tricky situation. I didn’t shield as my shielding letter didn’t come until quite late and by that point I had put measures in place at work for everyone that I felt were sufficient. We all made it through until mid September when my 15 yr old got Covid. 3 days later it was me and then my husband ( my 13 yr old completely escaped). Both adults were double jabbed, my son was not eligible at the time. We all got different symptoms and different levels of the illness, my husband had virtually nothing, my son was groggy for 2 days and lost sense of taste and I had 10 days of feeling fluey, full of cold and back ache for the first couple of days. None of us got a cough, which was reassuring as both my husband and son have asthma. I’ve since had my 3rd dose and the doctor said my immunity should be fairly decent by now. I confess to having become a bit complacent to wearing masks except at work where we all still do. No idea how we would have been without the vaccine but in some ways I’m glad it is out of the way. Figures in our area had been way below national average most of the time but are now way way over. I know many people who have had it or have it now but none who have ended up in hospital ( even my very frail pneumonia-prone neighbour managed to stay at home). Many cases in our area due to the false negative tests which caused so much confusion. Take care, keep doing what you feel is right for you.
Hi Keith, my partner with ET (and I) caught Covid when we were out - it was a busy place with no masks - so not surprising. . But because he was double vaccinated it was like a really bad cold. In bed for about 5 days, then tired for a week. But he is fine now. The jabs don’t stop us catching it but definitely stopped it being too bad.
I think a lot isnt understood about how much we are protected, there are many aspects to protection not just anti bodies.
I have PV, have chronically low (my consultants words) lymphocytes , so my wife testing positive last Saturday for Covid was going to be a big test.
One week on I am still negative and no symptoms. My belief is that the vaccine is protecting me. Why? Because i have always been the sort of person who picks up whatever is going, if my wife or work colleagues got a bug, i always got it soon after. So i do believe that the vaccine is working.
On shielding notes...i have worked from home since March 2020, bar 2 days last month. This is to continue but not because of shielding etc because its a decision the business has made for all staff. I am glad we dont have to shield anymore.
I understand peoples concerns if they are working and cannot work from home ( i feel sure my wife picked it up at work ) but for those that can work from home, or dont work, then i dont think it matters if we have a piece of paper from Matt Hancock etc telling us to shield, we are all responsible enough to make our own decisions about what we do, or feel safe doing.
In recent weeks, ive been enjoying football trips, restaurant visits, theatre, cinema, concert venues. Thats not saying im being totally reckless, i have walked out of places i havent felt safe such as pubs when too packed (or not gone in)
This is just my opinion but i feel the daily commentary now on numbers etc isnt helpful and can make people more fearful. Lets face it in some years if they did a running daily commentary on the Flu in winter months it could leave us scared to face the outside world, Plus the attention that has been gived to the effectiveness of the covid vaccines, yet we never did question the flu vaccine (which is actually usually far less effective than the covid ones).
I agree very much with Belgobrit72 final comment 'Take care, keep doing what you feel is right for you.'
Hi Paul. I see you also have low lymphocytes. My hematologist, who I am not happy with, told me mine were clinically insignificant. I just can't believe that. What is your hematologist's opinion on your low lymphocytes?
A few years ago after i was diagnosed and trying to understand more i was in contact with a specialist who did say not to worry too much as even though the count would be showing as low, this would be due to the fact i had a large spleen and that they 'would be in there somewhere'.
My Consultant says it potentially makes me more vulnerable to infection, we did discuss recently going on another drug which helps prevent infections but i decided i didnt want to as feel im pretty healthy generally anyway so for now dont want yet another drug with more potential side effects.
Hi Paul … my enlarged spleen with portal hypertension makes me more prone to infection as well …. We have to hope for the best and stay as safe as possible. I absolutely understand another medication and possibly more side effects… we try to avoid that scenario if possible for sure.
I like the possibility that our enlarged spleen may be hiding the fact that we actually may have antibodies from the vaccines.. nice thought!!
Yes. I have PV and am on Hydroxy. I continue to sheild, even from my family to some extent. I have two teenagers at school and my husband works in a large office. I have been working at home for the last 18 months and leave the house only for medical appointments and to walk the dog once a day. It is so difficult. Everyone in my house LFD tests every day. Numbers are so high here and very large numbers of children off from school. I've had 3 doses of Pfizer but antibody tests showed that I had none. I do feel it is only a matter of time before I get covid but I really believe I will not fair very well when I do get it. I am just trying to put off that time for as long as possible hoping that there will be better treatments when I do. However, the hospitals are so stretched with ambulances waiting in queues outside, that I am not hopeful I would even get the treatments that are available now if I needed them. It does make me so cross when people try and say that it is my anxiety which is the problem and I need to start getting on with my life. If numbers in the community were lower, then I may be tempted but I don't think I would last a week if I tried going back to my old life at the moment. I never thought I would crave the thought of getting on a bus to work, but its something I dream about now. As for going to the theatre or xmas shopping or a meal ... if only.
Yes, I will remain cautious, not just for me, but for other at risk family members too. However, I do go into supermarkets/shops. When numbers have been low, I’ve met up with friends for lunch, but that will be put on hold for awhile now.
I have recently upgraded to FFP2 face masks (due to hugely increasing numbers in my area), also advised by an expert in communicable disease control, Dr Bharat Phankhania. I still sanitise and where possible socially distance.
I retired during the first lockdown, so I don’t have that worry anymore. I can’t imagine how it feels to be put under pressure to return to a work environment. I totally understand the anxieties you and others have in relation to work and school age children, working partners etc. It must be so difficult and I imagine creates a certain amount of tension too.
Do you know the type of antibody test you’ve had? Is it possible you may have been tested for antibodies to previous Covid infection rather than antibodies to the vaccine. It would be awful to be misinformed on something so critical.
Yes, I know the antibody test isn't very reliable so I am not overly upset that it came back with nothing. It was done at the GP's and they didn't really seem to know what type it was. I have since done a home test for the blood cancer survey but that one came back saying that something went wrong and it couldn't be tested. I don't know why as I followed the instructions to the letter, so was quite disappointed I didn't get a result as this test was supposed to be testing for vaccine efficiency. I have since done another but still waiting for the results. Either way though I won't be completely relying on the results, it would just be nice to think I've got something
Wow MW… your life (thoughts & fears) and mine are so parallel and very real !!!! So much so that I had to read your response to my husband …. I always say that I’m not afraid of dying from my disease but I am afraid of dying “trying to breathe”…. One of my brothers was in hospital for
2 1/2 weeks with covid on oxygen (very close to being on a ventilator) and he said that it’s an awful feeling and he wanted to just give up many times because it was exhausting forcing yourself to breathe for that long. He didn’t think he was going home again.
Anyway I have to work hard to keep myself safe at home and it’s not easy.
I’ve lost a few friends and family members because they just didn’t get my disease nor my fear of covid but I know now that they weren’t that important anyway then.
But like you I know I won’t fair well either if I get the virus! I’m lucky in that I do not have to go back to the office yet… although they would prefer I was back there but I will continue to work from home until “I” know it’s safe for me to get back out there!! People think it’s anxiety and tell me I can’t stop living, but I tell them that I haven’t stopped living and I would like to keep on living….”it’s my reality”. People just don’t get it !!!!
But we have to keep doing what we know is the best we can to stay as safe as possible!
Hi. It is reassuring to hear someone thinking the same way. Sad that you have lost friends over it. Friends and family get a bit frustrated and impatient with me. It is worse for my children I think. We can't go out as a family and I feel I am missing their last bit of their teenage years which is irreplacable. I too can still work from home. My boss has made noises about us returning but luckily I work for a Local Authority so they are pretty good, so I am not worrying about losing my job or anything. So glad I dont work in a shop or school. I agree, we just have to keep doing what we know is best for us, regardless of what others think. Take care.
I have been working from home doing my job perfectly since March 2020. Now my Employer is putting me under enormous pressure to return to the workplace because " there is no more shielding and people can return to work" I tried to explain that just because Boris ended the shielding programme and threw us all under a bus, it does not mean that the CEV are suddenly no longer CEV and everything is fine and safe for them. The risk is the same, if not higher given the high case rates in the community . You've had both jabs they say ....and then you try to explain how they don't work very well ( if at all) in people with blood cancers. Sigh, it's like banging your head against a brick wall. Friends tell me that at work , only about 30% of people do a LFT ( it's available to all staff on a daily basis) and don't wear their masks or have them under their noses, congregate together and so on. There is no way an environment like that would be safe for me but People just assume, double jabbed, Government ending shielding , what are you being so cautious for ? It's very difficult.
Yes I too am still shielding as much as possible and have the feeling friends think I’m taking things too far but I don’t go in supermarkets, only shop I go to is Chemists who have a safe system. I was a regular Churchgoer but haven’t dared venture back yet as I don’t want to be in a building where there is a collection of people although I miss it very much. I’ve only seen my two sons and families on very few occasions (about 4 since it all began) . I have a face to face Haematology appointment on Monday and am worried about going into the hospital. I’ve also asked for an antibody test although I know they are not greatly reliable. I had my 3rd Pfizer dose 4 weeks ago although the NHS at that time called it a Booster so hoping it was the Primary dose as I understand Pfizer was the full dose. Best wishes to all who have replied on your post Keiks and thanks for posting.
Oh azaelea …. such similar lives…. Same as MWxxxx …. My husband will do the grocery shopping and the only place I go to as well is the pharmacy (chemist to you 😁) I’ve also only had 4 or 5 visits from my son but that’s it !!!! I have had to say no to some people who just don’t really get how the virus works!!!!
Since the pandemic started, I also have my first face-to-face appointment with my hematologist this coming Monday (crazy right?😀) because he wants to check on my spleen and I’ll be getting my form for the 3rd Pfizer dose. Hope your appointment goes well azalea and please stay safe!!!!!
How similar our circumstances are!! I do hope your appointment on Monday goes well too. Yes, my husband does the grocery shop once a week, going very early when quiet and with mask and hand gel. Best wishes for your safety too. Fran.
Hi I never shielded I always wore a mask and still do. I always try and keep my social distance although I do go into friends houses now for coffee. Although I have lapsed mask wearing a few times (when on train with toddler grandchildren )It annoys me greatly that people refuse the vaccine as I am well aware some people can’t have it or it doesn’t work well for them.
I’m quite relieved to say I have had a mild dose of Covid after double jab.
As for working in an office that’s a different story I’m retired. Good luck
Hi there Keiks Just wanted to let you know my story
I have ET PV and had portal vein blockage , COPD and had a GIST removed from duodenum about 18 months ago, have had a few hospital stays for poor health and a recent over dose of iron infusion after a colonoscopy ( surgeon thought he would fix my anaemia) 😖 and had a few venesections for PV I’m on rivaroxaban and HU and blood pressure meds, symbicort and spiriva inhaler !! All in all I’m still ok
I had both doses of Pfizer in May/Jun 21
I work in a residential setting with people who have dual disabilities- intellectual and complex/chronic poor mental health
I had clients test positive and due to circumstances, I had to care for the clients for 2 days whilst they were positive ( wearing full PPE after the tests came back) but was in close contact with them while they were infectious
I was very nervous over the following 14 days, I continued to test negative 3 times during the quarantine period.
I was due to have a follow up blood test during my quarantine period as haematologist suspected further problems with my recent routine blood test ( calcium in blood).
I completed second round of tests after quarantine which ended last week.
I believe I was protected by the double dose in June and am sooooo glad I did it then !
I believe if I wasn’t covered I would end up in hospital and hate to think what the outcome would be then !
I had covid very early, Mar 2020, before my Dx of ET later that year with heavy symptoms. I believe I had MPN starting 2013. So I was well into MPN during my illness. I had a medium covid case and was done with it after a few weeks.
So my immune system was working with MPN very active.
But I then suffered long covid up to my MPN Dx in the fall. But long covid occurs even with young healthy patients.
I've read that HU is not a big problem in normal dosages for immune response, while Jakafi (Rux) can be more so. (the usual caveat that we're all different)
-I note your Dr says "Blood Cancers" This is quite general and broadly true for esp the white cell types. The chart here from LLS, which I've posted elsewhere, shows MPN is in the better rankings for immune response at 97%. But this is for any detectable antibodies rather than the elusive "enough" antibodies. I expect LLS will provide updates and I hope more detail. It would be best to see the three MPN types broken out.
I have my 3rd shot for 4 total including the actual infection. (Hybrid immunity) So I feel ok going out, but i do wear my mask in public. If you have the option, the Moderna shot for the extra dose in either dosage they offer has more mRNA content than the Pfizer.
I have ET CALR and had a very mild dose of CV19 in March last year.I have done 2 Biobank antibody tests - one positive home result and one lab result which showed that I had antibodies from the vaccine and not from infection after about 3 months.
I am also part of the study at Guys - but do not get my results from them!
They phoned the other day to ask me to go in for another blood sample , so their work goes on.......
I am retired and live with my husband only - but socialise with a group once a week and go to restaurants and the theatre - also about once a week. I wear masks where required - even though it is down to about 50;50 on public transport.
Life is too short to stay at home and not live it ! Que sera sera!
Yes life is too short ..and I expect that things will be back to somewhat 'normal' soon but as I said, if I can avoid dying trying to breathe right now, I will do whatever I can... this is not a virus I want to play Russian Roulette with and then wait to see 'How' it will effect me. There has been serious cases and death around me with this virus. So you do whatever you want with your life but don't throw that "life is too short" b.s. out ... that's ridiculous at a time like this!
I am afraid that the general consensus is that, like flu and the common cold, Covid will be around for the forseeable future. I refuse to not live my life is all.
Yes it will be around like the flu and the common cold but until covid is under control like the flu and the common cold there is great risk …
I don’t think you really know how this stuff works … and by the way, “I haven’t stopped living my life, I’ve just altered it for awhile”……go live your life and get off this thread please. Your trying to sound like some kind of hero but you say you’ve already had a mild case of covid and your part of the study program at Guys so you think your experience is going to be the same for everyone. You obviously don’t really know what has been going on in the world…….trust me you sound ridiculous tough lady!
Hi Keiks. I don't think Runner999 is trying to sound like some kind of 'hero'. She is just stating her opinion and like everyone on the forum she as every right. She wasn't being rude to anyone or belittling to anyone in her replies. She as every right to join in on the thread and was probably offended to read the last bit of your reply. Tina.🤗
Hi Tico ... I understand what your saying but please read my response to Runner999 below and maybe you'll understand why I felt disrespected by her responses.She did exactly what I initially posted about.
Neither flu, nor the common cold are "under control" - the virologists can only track the main new strains of flu and hope the jab they give you will be the right one for that year.
Covid just happens to be a more dangerous virus than either of them. So how will it magically be controlled ?So I just get my vaccines and carry on, more or less, as normal.
That's the point ... this virus will be harder to control but can be eventually controlled the same way the flu and common cold is now .... I understand the different strains of the flu but right now we are in the "middle" of a dangerous killer virus and the vaccines may not work well for many of us here on this forum... you do understand that even in the healthy the vaccines will not "prevent" getting the virus....so until science has it under control "like" the flu and common cold we need to be careful.... your just going way beyond what is happening right now .... we all get that covid is here to stay but what is going on "right now" will eventually get to a point of being "under control". And the reason I'm a little frustrated with your posts is because my initial post was about people thinking that those like me are taking this being careful too far..... and what you've done is exactly what my post was about ... you obviously think I'm taking safety too far posting "life is too short" and "que sera sera" ... you know that means "whatever will be will be” so your saying staying safe in the "middle of a pandemic" is "not living life".... that is why your response to my post is disrespectful in this setting. I posted to get some support about exactly what people like you do.
Do you get it ??? And Tico, I hope you read this too then you might understand where I'm coming from. And Tico..She has the right to post whatever she wants, yes, but if she’s going to directly respond with “life is too short”,etc then she’s on the wrong thread so yes I can tell her to get off this thread! So I'm not sure what this forum is about anymore ... is it to support what our concerns are or to attack the concerns and except it because we have the right to post whatever we want.??? Sorry Runner999 that's what you did with your smartass responses!! I hope you do think about what I’m saying but I doubt it.
Hi keiks. Yes I do understand where your coming from and in the replies you recieved you've had a lot of people here sharing your concerns but also people who want to (me included) get back to some kind of normality in our lives after being in lockdown so long. Everyone as a right to post on the forum but some will have a different point of view, which is absolutely fine as long as its not rude or disrespectful to that person. You asked in your initial post if people shared your concerns regarding Covid? Runner999 didn't directly respond to you in her initial reply, just stated her opinion on what she was doing while still taking safety precautions and advocating that people take up the vaccines. To sum up and finish, I respect your genuine concerns regarding Covid but also share Runner999's right to state her opinion on the thread. I wish you well. Tina.x☺
My post was not about covid itself…. “You should read my initial post again”rather then spend this much time speaking for 999…. She missed the mark and has no intention of really listening… she just wants only her opinion stated and seen and your assisting her in doing that while I’m sure she is sitting there reading your posts to me with a big smirk on her face. It’s fine, I’m out of this forum. I get now why so many have left. Good for you Tico !
Hi keiks. I'm sorry you feel this way and implore you to reconsider your decision on leaving the forum, as I understand you do/did get a lot of support for your concerns. I'm not spending my time speaking on behalf of Runner999, merely stating we can all have a differing of opinions, sometimes we agree with that opinion other times not. Some of us will continue to shield if possible, some of us would like some normality back in our lives where and when possible and that is me speaking for myself and no one else. I only intially replied to you because of the tone of the reply to Runner999. I don't believe she only wants her opinion"stated and seen". Rather like me,I suspect she's finding the daily running commentary of Covid on the news unhelpful. I stated I respected your genuine concerns and also Runner999 having a right to state what she is doing and feeling. I hope this is the end of this subject and when you have time to reflect, you decide to remain on the forum. I wish you well. Tina.x🤗
OMG ... your still doing it ... is she your relative or friend?... is this why your doing this? .....Your still not getting it .... and she's having a good laugh over this!! I won't be ridiculed ... Bye !!!! No more !
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Sugar and alcohol…?
Has anyone with MPN been diagnosed or had any symptoms of covid-19
