‘My cancer means the Covid vaccine doesn't wor... - CLL Support

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‘My cancer means the Covid vaccine doesn't work - so I face shielding indefinitely’

zaax profile image

Baroness Nicola Mendelsohn thought the vaccine would provide salvation, but the Facebook vice-president found uncertainty instead.

telegraph.co.uk/women/life/...

or

web.archive.org/web/2021052...

40 Replies

Thank you for posting this - it’s great that some publicity, be it small, is being afforded to the continued vulnerability of the immune compromised to covid even after 2 vaccines.

Wish the uk government actually said more about this. Had my first face to face haematology appointment yesterday in over a year and was advised to continue shielding but have no official letter to show my landlord. I shall keep to outside socialising.

Newdawn profile image
NewdawnAdministrator

Maybe I’m foolhardy or delusional about my level of immunity but I have started to resume my daily life in as near a normal way as I did previously. Having had hypogammaglobulinaemia for over 7 yrs, I’ve always had depleted immunoglobulins/antibodies so the risk existed even in a pre-Covid world. And it caught me hard on occasion! 😱However, the loosening of all restrictions on social distancing worries me more. At the moment I’m in a town with an exceptionally low level of cases and places continue to afford me some protection. If all social distancing restrictions are abandoned next month, masks go and it’s a free for all with licence to hug, I’ll feel much less safe. I actually enjoy the distance between tables and people not invading my space but suspect I’ll still feel the need to mask up publicly going forward.

Commerce is clambering to open up fully and I understand that. People are fed up and they long for foreign shores but I’m under no illusion that this will bring much greater risks for me. However, I’m not sure what the Government can do about this once the vaccination process speeds ahead. So I suspect it’s going to be about personal responsibility and making choices that inhibit full integration. This is not so simple for workers however and I do think that employment protection needs to be put in place for vulnerable employees for some considerable time.

Newdawn

HopeME profile image
HopeME in reply to Newdawn

I do think that fairly heavy emphasis has to be given to the lack of cases circulating in the vicinity we live in and as you note it is low in your area. In the state of Massachusetts where I live it is also very low and following a sharp downward trend. A quick google search shows the seven day average of reported new Covid cases peaked at around 6500 in early January and it is now 339. So in Massachusetts where the vaccination rates are approaching 70% herd immunity is likely near? These trends in combination with the fact I have been vaccinated seem to substantially lower my risk. Yes. I am assuming I have some level of protection. So I’m not particularly concerned at the moment about venturing out. However, when the world fully opens up this fall and the weather turns cold I’ll become more concerned especially if average daily cases start to increase.

Best

Mark

Bikram21 profile image
Bikram21 in reply to HopeME

I’m also in Massachusetts and happy to see the downward trend of infections, but still feel the need to be careful. The warm weather makes that easier!

cajunjeff profile image
cajunjeff in reply to Newdawn

Good post Dawn.

I tested negative for antibodies and I should be operating under the assumption covid presents a serious risk of serious injury or death to me. I am instead operating under the assumption I have at least some protection from the vaccine and partial herd immunity and that there have been many advancements in therapeutics to treat covid if I get it. This is a strategy I have adopted and I am not recommending it for anyone else. I still try to take precautions, but I have resumed restaurant visits and some gatherings.

I also agree with your observation about what the govt can or should do for me. The vaccines are affording some level of protection to about 99% of the people who take them. I may unfortunately in the 1 percent. I think the govt should continue the process of loosening covid restrictions to get back to where we were. The fact a very small percentage of the population is immunocompromised does not mean to me all people have to wear masks and businesses can not get back to full occupancy.

As Mr. Spock famously said in Star Trek, the needs of the many outweigh the needs of the few.

We with Cll are on our own with covid now and our health is our own responsibility. That’s just the way it is. Life is easier once we accept life isn’t always fair.

...and as Bones famously said: life, Jeff, but not as we know it.

Big_Dee profile image
Big_Dee in reply to cajunjeff

Hello cajunjeff

You are so right and life is always a risk. Blessings.

Harvist profile image
Harvist in reply to Newdawn

Thanks for this. An echo of my daily thoughts. I just wish our UK government would be clearer in its messaging. I know too many people who think their 2 vaccinations have made them immortal and worse couldn't possibly give me the virus. When the lockdown restrictions in the UK get totally removed we are going to be in the worst situation. I honestly don't understand why masking on transport and busy confined spaces like shops doesn't remain. I have spent time in Japan and Hong Kong and people on busy trains and social spaces always masked. It never seemed to ruin their lives.

Then there are kids who will continue to be a handy reservoir for the virus throughout 21 and 22.

I too am in UK, and agree with what you say about our government not being unclear in its messaging. When Boris Johnson "ended shielding" in July 2020 people didnt understand why I was still shielding. Now I have had an antibody test, and I have produced some, I am starting to go out - mostly outdoor visits - but I have been to the gym a couple of times as well - it has perspex screens between all the equipment, we have to clean the equipment after we use it, and at 8-30 am the people going to the gym before work have left and the people intending to come after the school run haven't arrived. So there are only a couple of people in a very large room. But before people can visit us at home, and before we visit others at their home, or in the local cafe, they must be at least 2 weeks post 2nd vaccine. I will be telling them that my oncologist said that. None of them know him so they can't check! 😜I mind that I need to sometimes exaggerate, but people just don't get it!!!

It has been shown, dependent on indoor conditions that the virus can remain airborne from a matter of minutes to 16 hours.

So if someone before you has come in to the gym with Covid, the screens may not be of benefit.

Less people indoors is always better, but if before you got there it was packed, then the virus could still be present.

Best to you.

The air is being cleaned 24/7 - can't remember how, but it is. Temperature taken at the door. I think it is safer than many indoor places. I won't be going to classes for a while yet.

KatieBlue profile image
KatieBlue in reply to Harvist

I’m in the states and I completely empathize with your sentiments. Our masking order where I am expires Tuesday and is not being reinstated. Unvaccinated are supposed to continue masking, but there is no way to enforce this.

The unintended messaging from the CDC is the pandemic is over.

I’ve encountered some of the opinion on social media about being safe if fully vaccinated (I like your “immortal” description of their demeanor ) and unable to spread if vaccinated, too.

in reply to Newdawn

Maybe you are both.

Newdawn profile image
NewdawnAdministrator in reply to

Both foolhardy and delusional? If it means clawing back some semblance of normality in the safest way I can, then I’ll have to accept the description.

Newdawn

in reply to Newdawn

You chose the words lol good luck and stay safe

RogerPinner profile image
RogerPinner in reply to Newdawn

I just want to reiterate your comments and those of Cajunjeff, and having read the results of the Birmingham study published in the Lancet in the last day or so, the dilemma is confirmed, especially for those of us on BTK inhibitors and with low Ig levels. But you have a couple of aphorisms on your profile page that gives a clue to how you and (I hope) I will behave. Thanks for your thoughts and advice over the past few years.

Roger

Newdawn profile image
NewdawnAdministrator in reply to RogerPinner

Thanks for your observations and kind words Roger. Clearly some may have taken my tongue in cheek ‘foolhardy and delusional’ quip literally and I’m far from being either. However, I have responsibilities that don’t give me the freedom of choice many others have and for my entire CLL journey I’ve had to take risks as a carer. Sometimes the risks haven’t paid off but like many others, I don’t have the luxury of catering exclusively for my own needs. I’ve spent almost an entire year in lockdown in the U.K. like many others on here. It’s been hard both physically and emotionally and I was becoming aware it was impacting very negatively on me. Any decisions I make are done with analysis of the local risks and in a balanced way, observing social distancing and mask wearing at all times. I may have to reassess the situation if and when all restrictions are lifted and I sincerely hope it’s not done next month. I’d prefer to see the younger generation vaccinated before we throw open the floodgates and people throw off their masks. However, I’m aware life is passing me by and whilst in full receipt of the risk data, I do intend to venture out more at the moment if only to preserve my confidence and mental well being!

We all need to assess our own situation and make the decisions we feel comfortable with and can accommodate. None of my comments are intended to minimise the dilemma we all face.

Regards,

Newdawn

Big_Dee profile image
Big_Dee in reply to Newdawn

Hello Newdawn

Life is a risk and how we approach it depends on ourselves, no one else. Blessings

RogerPinner profile image
RogerPinner in reply to Newdawn

I don't know how anybody could have read your original comment in any way other than the way you intended. Also I appreciate, from some of your past posts that you are a carer with massive responsibilities and that you haven't had the easiest CLL experience. I often wonder how I would have coped if I hadn't been retired when my CLL was diagnosed. I guess I'm lucky.Roger

Just asked my cll specialist about precautions because of the potential ineffectiveness of the vaccines for cllers. He basically said that as immune compromised you must continue being at least as careful as you were before COVID. Also, in Canada, 70-80% will have had at least one shot by the end of June.

On the chance that you do contact COVID, he thought that because of the vaccines you would likely not die or end up in the hospital. In addition, if you are blessed with having to get regular immunoglobulin infusions through IVIG or SCIG, you will acquire some anti-COVID antibodies by next year (at least a one year lag between blood donations and the production of immunoglobulin). And hopefully in that period, the scientists may figure out what kind of boosters or additional shots the immune compromised will require.

So, don’t give up hope.

KatieBlue profile image
KatieBlue in reply to Vizilo

I’m a bit shocked that your CLL specialist would think that because of the vaccines you would not die or end up in the hospital if you contracted Covid. . The level of protection received from the vaccine isn’t yet known for us, though initial studies show it is generally much less than for healthy individuals and even absent in some circumstances.

I’m not sure if you happened to see the article here about the man from Chicago who was fully vaccinated and went out to a restaurant. He contracted Covid and ended up dying.

Take a look at these links of study summaries, and if concerned perhaps send them to your CLL specialist for his comments.

ashpublications.org/blood/a...

eurekalert.org/pub_releases...

This info at the above link also points out that those of us with CLL also have an increased risk for severe Covid-19 disease, including mortality.

This next link shows initial results from the Birmingham study where it appears some CLLers do get an increase in antibodies after their second shot, however those levels are over 100 times lower than those in a healthy individual.

leukaemiacare.org.uk/suppor...

Vizilo profile image
Vizilo in reply to KatieBlue

I don’t disagree with you. But reread my second sentence about the requirement to continue to be as careful as you were before COVID.

My doctor did not say that I would not die or end up in the hospital. You missed the “likely”

And I’m not going to a restaurant any time soon. BTW, 6 months before COVID I caught a bacterial infection at a party and ended up in the hospital with life-threatening septicaemia

So, with a compromised immunity, I’m not negating the importance of being careful, social distancing, frequent hand-washing before, during or after COVID.

Even after receiving both Pfizer shots, my partner and I are basically isolated from friends and family and if and when we resume normal activities, we will try to keep our closer contacts to only those who have been fully vaccinated. So, please don’t rush to judgement.

KatieBlue profile image
KatieBlue in reply to Vizilo

I did see your doctor’s comment you shared about needing to be at least as careful as before Covid, but didn’t specifically address it in my last comment because I felt the information at the links addressed the need to continue mitigation measures.

I am being much more careful since Covid. I do not see a reversion to what was “normal” for me before Covid. For me, being as careful as I was before Covid would put me at great risk for contracting Covid.

I understand each of us may decide differently regarding the options out there as to how to forge ahead. My concern is that we are able to make an informed decision and risk assessment.

Ps I didn’t miss “likely” when reading your comment, but I did omit it in error while tapping out my reply. Apologies bc the word ‘likely’ should have been in my response and I did miss it during my proof reading.

Best to you.

Wow, hard to believe that there are immune compromised patients who don't know that the vaccine might give them little to no protection. This is a special group here 😉 We all know about it.

KatieBlue profile image
KatieBlue in reply to LeoPa

I recall seeing a post in the last couple weeks or so from someone who was not aware of this. So we need to keep spreading the message for those who may have missed it or for any newcomers here searching for information about this.

OK, I'm officially one of those clueless people. 😬 I've been out of touch (enjoying a CLL vacation/remission) and have just gotten back onto this group. I guess I need to ask my doc for an antibody test.

I received the Moderna vax and had a very sore arm with the first shot, same with the 2nd, along with flu-like symptoms for a couple days. Everything I read suggested that was the antibodies working their magic. I couldn't find anything online about whether that's the case for CLL folks.

KatieBlue, the link you shared eurekalert.org/pub_releases... was especially useful. Thanks for sharing it!

Hi neurodervish,

I’ll also share this pinned post I wrote that hopefully will shed more light on things. There are a lot of unknowns, but currently there isn’t even a correlation between a vaccine reaction and immune response (and vice versa).

healthunlocked.com/cllsuppo...

Your doctor may or may not order an antibody test. Some feel it isn’t helpful, some say it most insurances aren’t covering “because there is no specific action to take on the results. “

There is the LLS study in the US and Birmingham University UK study that are testing blood samples of those with CLL. Some considering the LLS study are concerned about the amount of personal info and medical records that have to be disclosed to a third party.

There are some labs where you can pay out of pocket, but you’ll want to be sure you have the semi-quantitative test rather than the nucleocapsid test. The latter tests got antibodies post Covid infection. More about the semi-quantitative test in my post I linked above.

All that being said, it is yet to be determined what the test results mean and what would be considered a protective level.

Best to you.

Thank you so much for taking time to write such a comprehensive response. It's very kind and generous of you. And your "CLL: When Being Fully Vaccinated for Covid-19 Doesn’t Mean Fully Protected" answered as many of my questions as is possible for now.

I am officially bummed out. But that's not your fault. 🙃

My hope is that, because I'm in remission, am not actively in tx, did not have Venetoclax or BTK inhibitors, that I may stumble into one of the more favorable categories. Fingers crossed, but I'm staying masked and distanced.

I'll be honest, I don't even want to hug anyone anymore... I just want to be able to select my own damn avocados. Those curbside grocery deliveries are killin' me. 😐

Thanks again, N

I find I wax and wane between “bummed” and “exceedingly bummed.” That being said, I prefer that to having a false sense of security and wrongly believing the vaccine protects me when it likely does not.

From there at least one can make informed decisions— at least as informed as we can be at present.

I discussed my concerns about the vaccine being of low or no protection with one of my specialists (by phone appt.) and how there isn’t a good way to know how well the vaccine works. He seemed to agree by various mm-hmms and yeses. But as the appt drew to a close he said that since we would both be vaccinated by my next appointment, it could be an in person appt. (Insert face palm emoji…)

So sorry about the curbside avocados. Hang in there.

LOL, don't even get me started on the nearly-expired quarts of organic half and half...

My next onc appt is in person in a couple weeks. I think I'll print out the eurekalert.org/pub_releases... piece and highlight the relevant sections.

It definitely is a challenge. I’m fortunate my sister and I share a house and she has done the in person shopping and I will order curbside or shipping for non perishables. Still have gotten some expired items and way too many dented cans! They’ve been really good about replacing or refunding.

My heme/onc is okay with me doing phone appts as long as my labs stay stable. I try to schedule those as a first appt on a Monday. I’ve not been to an in person MD appt since early Feb 2020 while I was dealing with a kidney stone.

On the pinned post, there are some other relevant links that may hep— a link to another’s post here with preliminary results from the Birmingham UK study and AussieNeil included a link that Brian Koffman from CLL Society shared Dr. Byrd’s opinion on this…

Ps - lovely photo 💜

Lady Mendelsohn's concerns are ours. She mentions protective monoclonal antibodies as one possible way out for immunocompromised folk like her and fellow blood cancer patients. Her husband Baron Jonathan Mendelsohn raised a question about them in the House of Lords a couple of months ago, and a DHSS spokesman reaffirmed government's commitment. But more recently a rumour surfaced casting doubt on this healthunlocked.com/cllsuppo...

For non UK readers, note that government would have to fund an NHS programme of antibody injections for people deemed to be at risk from Covid after vaccination. If government has already decided against such funding (even as clinical trials are still in progress), that's one less route to normality for many of us.

I understand the concerns of those of us who have CLL may not be fully protected from the vaccine. But I refuse to go around with an "Oh woe is me" attitude. Just sayin.

Interesting replies (and takes) on the “maskless era” we have now entered. It certainly is a personal one and I tend to side with NewDawn n Cajun-ragin Jeff who both have a unique and thoughtful perspective on life with CLL... but that’s just my opinion.

I am respectful of other opinions on this challenging topic as there’s not a clear “right” answer.... nor probably never will be.

Boils down to “you gotta do what ya gotta do”... is that a Yogi Berra quote?

IMO people worldwide are not taking into account the increasing numbers of people on monoclonal antibody, as well as other treatments, for disease states where the treatment impairs immunity. I hope, moving forward, many will modify their daily living to take care when exposing themselves to potentially infectious agents of any kind. As well as advocate for the places they interact with accommodate that desire or not, as the business chooses. Public places/entities should always err on the side of caution.

When I got this diagnosis, I quit shaking hands with strangers. I never liked it much to begin with, and liked having a socially acceptable excuse to not allow strangers to touch me. Before Covid I masked only during flu season, but am finding I like masking and eyedrops during pollen season! I am sneezing/coughing less since I am inhaling less pollen, and my eyes don't water either. So I will continue with this, it works for me.

I think people should be free to do what is best for them. It's interesting for me to note that in many places here in the US, Republican lawmakers (who generally have "less government interference in businesses" as a big part of their platform) are legislating whether or not businesses can require masks, or ask that employees to be vaccinated. "No shoes, no shirt, no service" is a safety concern many businesses here adopt, and since masks are used for similar reasons, I don't like that some lawmakers are politicizing something that should be an individual choice.

How do you get those anti-vaxers family members in your inner circle to get vaccinated? i have explained til im blue in the face, given them research to look at (that they problem dont really understand). If I did the herd immunity for our a family get together would <30%. The anti-vaxers of the family just also happen to be the "mother ship" for family get togethers. I am so incredibly hurt that my life is not worth protecting. Oh...did I mention the family that wont get the covid vax gets all necessary vaccines to go on mission trips around the world but wont get the covid vax to protect my life. Why I am the jerk asking people to mask around me or vaccinate?

SofiaDeo profile image
SofiaDeo in reply to spanglem123

So sorry to hear this. You aren't the jerk, they are. Unfortunately, you may need to choose avoiding them. Ask them why they care about strangers (who they get vaccines to go on a mission trip to their country) more than family. IDK if this will change their mind, since it seems in the US anyway this has become a political instead of public health/choice issue.

spanglem123 profile image
spanglem123 in reply to SofiaDeo

We had a bit of an argument about it 3d ago. They said they would "think" about it and get back to me, but really can't get over why on earth are we having this conversation. To me it's a no brainer... im compromised and could potentially die and they say when its my time to go then i go, but im like. wait a minute- wtf? I would like them to look me square in the eye and tell me a stranger in Africa is more important than my life...then im going to leave it at that and go from there. idk...😪😞

simples: not vaccinated, not welcome

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