Hi,
I am 65, have relapsed CLL after FCR treatment, made no antibodies to 6 Covid vaccinations.
Otherwise I am healthy and physically very active.
I'm so tire of the mask everywhere and so is my wife.
Can anyone tell me if they have had Covid and how it went for them?
Or anyone that can tell me the mortality rates for the current variants in circulation?
Thx
Skipro
Hi skipro,
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Take a look at this discussion from yesterday: healthunlocked.com/cllsuppo...
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I believe the bottom line is if you have symptoms or test positive- get Paxlovid right away. (Make certain you know where and how to obtain it- at the least convenient days and times)
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For the experiences of others, read the box on this page labeled : Related Posts
*Covid community or CLL
*CLL and positive for Covid
*Covid and CLL still here
*Cll and covid vaccine uk
*Long Covid Syndrome and CLL
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And on the page linked above: healthunlocked.com/cllsuppo...
Related Posts
*When to expect covid negative result after Paxlovid treatment
*Covid and Pfizer (paxlovid)
*Covid - Paxlovid and Ibrutinib
*Paxlovid for covid
*Warning about Paxlovid (Covid antiviral)
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Len
Hi skipro, like you I was treated with FCR, finished 6 cycles nearly 3 years ago, and still have very low immunoglobulins and practically no antibodies after 3 vaccinations. I had Evusheld 12 months and 6 months ago but as we know it's ineffective against current variants.
Since day 1 of the pandemic I have worn a FFP2/ N95 face mask in public spaces and so has my wife. Neither of us has had Covid. Extended family and next door neighbour have all had it at least once, but they have tested and taken sufficient care, or we have just been lucky. We have been on several holidays including two weeks in the USA (I live in the UK).
In the era of Omicron I have not been overly concerned about catching Covid. I know that a small minority of people get very ill, and a few die, but the rates are much lower than in the early stages of the pandemic. Vaccination may not have given you and me many antibodies but it will have helped boost our cellular immunity against the virus. And we have the AVs now.
From memory, dozens of our CLL members with one of the Omicron strains have reported symptoms ranging from the equivalent of a cold with sore throat to severe flu like symptoms with fever and body aches lasting two weeks or more. Those who got access to an antiviral like Paxlovid in the first 5 days had a milder illness and recovered fairly quickly, usually within a week or so.
I believe the antiviral treatments still recommended for immunosuppressed folk at early stage of infection are Paxlovid, Remdesivir and Molnupiravir.
Dear skipro— about a month or so ago I read that there were still close to 4,000 people a month (edited correction: per WEEK) dying of Covid. More than those lost on 9/11 per week.
The CDC came out last fall and said that one in five infections results in long Covid.
With omicron, my oncologist commented that “not as many” of her patients were dying from Covid. But that meant there still were patients of hers dying. Blood cancer patients are among the highest risk for severe covid/death from covid.
Just as we have lost evusheld, there is speculation that paxlovid may be losing efficacy against the upcoming variants. Some of the lineages are showing, and traced to, Molnupiravir mutations.
B-cell blood cancer, ongoing immunosuppressive treatment, zero antibodies from the vaccines here. One thing I’ve realized about myself over the last few years is, I really enjoy unlabored breathing. I don’t trust that I will be lucky enough to survive covid should I get it. So I am doing everything in my power— since public health has abdicated their responsibilities to the individual here in the US— to avoid getting covid . But even should I get it and survive, there is a lot yet to be learned about post virus sequelae related to covid, how it negatively impacts one’s immune system, and then long covid, also .
It is a mass disabling disease affecting numerous systems of the body. So even if I grew tired of masking to avoid death, or figure there’s just not as much in the mainstream news about covid deaths (or covid at all— even our president has forgotten all about covid), it must be getting milder or gone away, or over... When the public health emergency ends in May, that minimization will be worse— and many won’t be able to afford tests or to miss work. Already many aren’t testing. Or employers are requiring people come in after 5 days from initial infection because of the CDCs isolation change, even though most infections are taking 10 or more days to clear. But I digress. The gist is it’s not over, it’s not going away and more people will be out in the community with it because “it’s not covid, it’s just a cold”, “I have allergies,” “I just had covid, I couldn’t have gotten it back this quickly” (you absolutely can).
I’ve read enough to know that I am better off the longer I can avoid covid and the fewer amount of times that I can be infected.
I’ve had a hard enough health life pre-CLL, pre-covid that I don’t need what covid can leave in its wake. Fortunately I grew up on a rural farm and so I was never much of a social butterfly. Restaurants and bars, etc., weren’t part of that existence and never became an integral part of my life.
I’ve realized that covid is not going away and that means I will be masking for the unforeseeable future. I’m not tired of wearing a mask, anymore than I am of a coat and boots in winter, It’s one of the few protections I have left.
Best to you and your spouse.
Hi Katie:
I think you are being overly critical of the President and US public health, etc. And for the record, I’m no fan of the current administration nor the previous one for that matter. But what more can be done? My God we have spent trillions on this disease. If your figures are correct, there are 48,000 people in the US dying annually from Covid on a population of 300,000,000 million. I like those odds even with CLL.
Best,
Mark
Hello Mark,I inadvertently tapped “month” instead of “week” when writing this on my phone in the early hours of the morning (and I’ve noted the correction in an edit above). 4,000 people a week. That’s just the attributable deaths. Excess deaths are much higher. Doesn’t include deaths from post covid sequelae. Doesn’t include numbers disabled from covid. Sometimes there are worse things than death. But perhaps those are still acceptable odds for you.
President Biden literally said, “And I think we — I sometimes underestimate it because I stopped thinking about it, but I’m sure you don’t: We lost 1 — over 1 million people in several years to COVID.” If the “stopped thinking about it” doesn’t equate to having “forgotten all about covid,” then I apologize for not stopping to look up the exact quote when I was tapping out my earlier reply. I don’t consider it being overly critical to summarize what was said.
The CDC has said that it is up to each individual to assess their own risk. They then changed the metrics to make it more difficult for individuals to assess their own risk.
Btw, personal responsibility is NOT public health.
npr.org/sections/health-sho...
When you have the director of the Centers for Disease Control and Prevention equate masks with a mark of shame and ostracism (scarlet letter) for an airborne virus, then implies masks are an impediment to normal life, what conclusions are to be drawn about public health?
The quote: “I just know people are tired and they’re the Scarlet Letter of this pandemic. It may be painless. It may be easy, but it’s inconvenient. It’s annoying. And it reminds us that we’re in the middle of a pandemic. Right? And so we get to live our lives again normally if we don’t have to wear the mask.”
-R. Walensky, CDC Director Feb 21, 2022 (Andy Slavitt podcast)
That the airborne nature of the virus has been downplayed, that people still believe if you’re vaccinated you can’t transmit it, are major public health fails. And though in this reply I’m focusing on US public health, I didn’t mean only US public health. Unfortunately the death knell for public health throughout the world is tolling. In today’s world, Dr. John Snow, father of public health and modern epidemiology, would be wanted for theft of the Broad Street pump handle.
People at that time probably also threw up their hands and asked “what more can be done?” Clean water was a huge step forward in disease control. But it wasn’t cheap. Clean air could go a long way to reducing transmission. But it’s costly. Ventilation, filtration, adding UVC lights, increasing air exchanges per hour, are all technologies we have today. But “my God, we’ve spent trillions on this disease.”
We are losing efficacy of the treatments and therapeutics, the vaccines… etc., but… we’ve spent trillions.
Millions of formerly healthy, active, individuals have developed long covid and are searching for answers — but research is expensive. The disabilities from— and to come— and the loss of life are costly.
It seems many have decided that 4,000 deaths per week are acceptable.
I’m sorry I don’t have the time or energy to go point by point over the myriad public health failings, poor messaging, and broken promises along the way. I’m definitely critical of how covid has been handled. It’s so egregious, I honestly haven’t even come close to being overly critical. Nevertheless, I did not intend for any detectable criticism to detract from my points that we aren’t necessarily getting the full picture about covid, we are at a disadvantage when trying to make informed decisions/assess risks at the individual level, and there are a lot of unknowns regarding the impact of covid to our health and well-being.
Have a good day.
thank you
I agree with all you’ve said. I’m a surgeon and wearing a mask all day is natural and no big deal.
my reality is my spouse has not been kind or supportive of masks except in spurts.
I suppose that I’m actually really tired of this all of her complaining, insults, and hurtful comments about me being driven by “anxiety” when I wear a mask.
Thanks again for your input
Skipro.
That’s a tough position to be in and I’m sorry that your spouse has been less than supportive. I have read accounts of others in similar circumstances and in addition to being beyond hurtful, it is extremely undermining to the relationship.
If, at worst, masking is a coping mechanism, then those who wish to belittle people who mask have denial and anger as their underlying coping mechanisms. That or they have zero compassion and complete lack of understanding of what we’re really up against.
I saw a really insightful comment a few weeks ago on Twitter that is topical, but I haven’t been able to track back to it yet . If I am able to find it, I will share it with you.
We are all tired. Hang in there and take care.
well put , Covid causes organ damage as well even in mild Covid. Mask wearing also protects from other viruses. Stay safe
You too.
hi skipro.
My husband has CLL and is on clinical trial Venetoclax. He was at more risk due to being immunocompromised but white cells / neutrophils within range although very low
We have been very careful, always wear masks & sanitise still and we don’t really socialise. We both got Covid early last Nov and have no idea how we got it. He got Paxlovid within the five day window and tested negative then positive and then negative again after a week or so. We continued to test on an ongoing basis as he seemed better but still had some symptoms. He became very ill early December and I had to take him to the ED one night with high temp. They did various tests and next day said he was positive for Covid. Throughout the next two weeks in isolation he was given everything to keep him going. A couple of times we thought he was not going to come out. He had extreme weight loss and lots of other issues. Two weeks later he came home but he couldn’t walk or function and we were really worried. Now two months later, he is starting to walk and beginning to get some strength back. I think it may take another few months before he gets any way back to normal he still gets very tired and his legs are painful when he walks.
Back to consultant this week so we shall see how that goes and if his illness and the medications they gave him have had any effect on his trial.
My advice would be to keep wearing masks and doing everything you can to avoid Covid. You may be one of the lucky ones who does not get this sick but you won’t know until it happens so why risk it?
This has been a terrible experience for my husband and our for our family. It’s awful to see a loved one this low. Very scary experience.
We did everything right safety wise and still it caught it. We continue to mask, sanitise and avoid mixing socially and will continue to do so.
Stay safe. 😊
As you say, a scary experience, the like of which I don't recall reported on this forum. Thanks for sharing. Apart from CLL, how was your husband's health before Covid?
Hi Bennevisplace,
He was in perfect health other than the CLL and we were current with all Covid vaccinations, also flu vaccine. We took every possible precaution but it found us 🥴
Thank you. Your experience is a salutary lesson in the unpredictability of the course of Covid in a particular person. In view of the precautions you took, you were doubly unfortunate. Best wishes going forward.
thank you so much for your insights.
It saddens me to think of all that you have been through.
I think it’s wise for me to continue to be very careful. Although this does cause a lot of contention in our marriage, and has led to a lot of alone time, because my wife really doesn’t buy into the the risk associated with having CLL and getting Covid.
Just trying to walk a fine line.
Thank you so much.
Skipro.
You are very welcome. We are fine and keeping positive. It’s wasn’t easy with CLL before Covid. We are almost eight years down the road and on second lot of treatment. We have had to be careful since then in winter due to flu etc but since Covid arrived it’s a nightmare.
I find it hard also but I just want my husband to stay with us so we do what we have to.
With the summer coming we will all have more freedom to be outside and not at so much risk. I look forward to that. This Covid hopefully will fade away or become a minor risk some time and we can just look forward to that.
I wish you the very best and hope you remain safe and Covid free.
Hi Skipro,The vaccinations have two effects. As most people talk about they cause antibody generation, however, they also generate a T Cell reaction as well. Whilst you may see few antibodies the T Cell effect is important. I don't think the T Cell effect can be measured, or not with normal testing.
I had Covid in December 2022. To my surprise I tested positive in hospital when I was in for a checkup for the CAR-T trial I am on. It took two LFTs (first one a nurse thought she could see a feint second line and nobly else could, on the second one nobody could) so decided I wasn't and a 'just to be sure' they'd do a PCR. Six days later I got a call to say I'd tested positive on the PCR.
I do not remember any adverse situation or symptoms during the 90 days prior to the PCR and as described to me by the NHS hotline a PCR can detect COVID at up to 90 days after you've had it.
Best to all, rob
rob thank you for your comments.
This whole disease is complicated. I’m glad you did well.
Skipro.
Sorry to hear you have relapsed. I had FCR a year ago , and 3 months after finishing the 6 months, caught covid for the first time. I had had Evusheld before treatment and 4 vaccinations. As soon as I tested positive my Ccl specialist sent me a prescription for Paxlovid and I experienced only a short cold like illness. I was a bit poorly for 4 days but really not very I’ll. Hope this helps.
I had my last dose of FCR in late August 2021 and have remained in remission since *knocks wood* with my lymphocytes and neutrophils in the low end of normal. I have kept current with jabs but have no idea about antibodies, but assume I had none and still don't.
In April 2022 my son brought home Covid from his work and infected the whole family. My son, daughter and wife all wend through the acute phase in about 5 days and tested negative on day 7 or 8 if memory serves. On the other hand, I got knocked on my ass for 2 and a half weeks (despite Evusheld about 6 weeks prior) and Paxlovid. I tested negative another 10 days after the acute phase and it took WELL OVER 6 MONTHS for my energy levels to return to some semblance of "normal." Six months of insomnia, lethargy, random tachycardia... no fun for someone who likes to hike, ride a bike and go kayaking in the summer. I'm convinced I suffer from some form of "long Covid" that's sapping me of my energy. Things are better now, with energy levels almost to pre-infection levels, but I occasionally relapse into bouts of lethargy and insomnia (you'd think those two would cancel each other out, but no...).
Prior to my SLL and Covid, I was generally healthy and active, although overweight with slight hypertension and elevated cholesterol levels, both well under control with medication. I'm now 54 years old.
Death does not scare me nearly as much as chronic, long-term disability. My bout with Covid gave me a small taste of that and I didn't like it. I have NO DESIRE to contract Covid again, and do everything I can to avoid it: N95 masks in all public indoor places, no indoor dining, no bars (i.e. no situations where I need to unmask indoors) and I work from home as much as possible.
To be clear: I HATE MASKS. HATE THEM. I'M TIRED OF THEM, TOO.
But the alternative is worse.
I’m sorry to hear that you had such a rough go of it.
I’m starting to wonder if I went through long Covid.
Shortly after receiving the second round of or ketchup, dose of have you shelled, and with the advent of paxlovid, I loosened up all my precautions.
I’ve always had “Covid like symptoms“ for decades.
I occasionally tested with home tests and PCR, which were always negative.
However, for the next four or five months after loosening up on my restrictions, I became short of breath, developed wheezing with exertion, coughing, extreme fatigue, brain, fog, lack of motivation, and this lasted for 3 to 6 months, and maybe persist a bit until the present.
Not sure if I have or had long Covid. The antibody test for having Covid is also the same antibody that is in my immunoglobulin infusions, so I’m not sure if there’s any way to make the diagnosis.
Fortunately, my CT scan of the chest was normal, and my symptoms are starting to improve.
If that were long Covid, it was really horrible and I don’t want to get it again.
I hope that you do well. I recover quickly.
Prayers with you.
Skipro.
Hi there. After being careful for three years, (both my husband and I) he brought covid home. He got paxlovid immediately; I could not take it as I am on blood thinners. So, my oncologist gave me Molnupiravir, which I have read doesn't work as well. I don't know if it is because I have had every vaccine, booster, etc, or if it was my monthly IVIG or the antiviral, but mine was fairly mild, mostly from the neck up. No fever, just lost of congestion, coughing and fatigue. (My prior treatments are FCR and obinituzimab, venetaclax and umbralisib). This was mid January. The weird thing now is that I feel like I get a cold more easily. I am still mostly masking, but sometimes do go without around family.
thank you so much for sharing your experience.
I hope you do well.
Ski pro.
Hello skipro
I am retired so not being exposed to other people all day long. I do shopping and etc. where I do not wear a mask. I would not however ever enter a hospital, which I do as am doing V&O treatment without a mask.
hi
Thanks for sharing your experience.
I’m on the brink of starting treatment, and based on my lab work, my doctor thinks the best approach would be V + O. From what I understand both of these are highly immunosuppressive.
I am considering using the new BTK inhibitor
ZANU because I’m thinking taking one as opposed to immunosuppressive agents would be safer in this Covid era.
Although I don’t like the idea of being on it and definitely.
Anyway, thank you so much for sharing your story. Best to you.
Prayers be with you
Ski pro.
One thing to consider in starting a new treatment, at least according to two of my oncologists, is that now they seem to favor two drugs over just one. I suppose because it hits two areas. You are correct that both O and V are highly immune suppressant. I was doing mine in 2020, and it was sort of a nightmare as far as getting around anyone. I just did not. But, they worked!!!
Hello skipro
Whereas V&O is known as being highly immune suppressant, 6 months in V&O, my immunity is good for someone with CLL and doing great.
Skipro, Big_Dee and beanlake14 , with respect to V&O being "highly immune suppressant", I don't consider this phrase helpful and it needs unpacking. I'm responding to this both from the perspective of personally having had triplet therapy of V&O plus acalabrutinib and from the technical perspective of how these drugs all suppress the immune system, bearing in mind that CLL also suppresses the immune system. Acalabrutinib is very similar to zanubrutinib in terms of adverse events and technically is a slightly cleaner drug with respect to off target kinase inhibition.
With respect to immune system suppression, CLL does this in many ways, with suppression of plasma cell activity the most obvious, which is why developing low immunoglobulin levels, (low IgA, IgG and IgM - hypogammaglobulinemia), is common when you have CLL. It can also suppress production of all blood cell types through bone marrow infiltration, so production of all white cell types are suppressed, hence neutropenia can be an issue. (My primary immunity challenges prior to starting treatment were low plasma cell production and neutropenia, for which I was supported through subcutaneous IgG infusions weekly and G-CSF injections alternate days to boost my neutrophil count. My specialist made the observation that towards the end of my treatment, my immune system was less suppressed than it has been prior to starting treatment. I was no longer chronically neutropenic.) CLL also drives T cells to exhaustion.
All of these drugs including all the BTKi drugs, unfortunately kill off healthy B cells as well as CLL cells, which is why you are unlikely to produce antibodies from vaccinations or infections while in treatment. Obinutuzumab has the unfortunate impact on your adaptive immunity of mopping up any new B cells until it is all used up, which is why it can be at least a year after your last infusion before you'll be able to produce new antibodies. This is why it became a less desirable drug treatment class during the pandemic, that and the requirement for hospital visits, with the corresponding increased risk of infection from travel and community exposure. (This mopping up is also why you can get a deeper remission with obinutuzumab - more chance of achieving uMRD.) Venetoclax and BTKi drugs may slightly target CLL cells more than healthy B cells, as CLL can over-express BCL-2 and BTK respectively, compared to healthy B cells.
In summary, how your immunity is specifically impacted by CLL and how the differing drug treatment classes are likely to potentially worsen or improve that, need to be taken into account, as do your personal circumstances, (working or retired, family support, ready access to medical services and CLL specialist support and so on). Blanket statements about the degree of immune suppression of different drug classes and treatment protocols can be misleading. In my case, which I'll accept is rather unusual, I ended up in hospital with febrile neutropenia 11 days after starting acalabrutinib, was able to cut back on my G-CSF injections after commencing the obinutuzumab infusions and sailed through the venetoclax ramp-up. I was able to stop G-CSF shots within 2 months of achieving 400mg venetoclax per day.
Neil
Hello AussieNeil
My point exactly, whereas I have I have read a lot of complaints about V&O immune suppression, my immunity is great.
Big Dee:
You and I have followed the same path almost exactly. BR, a lengthy remission and then V + O with good initial results and most importantly no infections. For example, my wife had Covid in May 2022 and about eight days ago my son came down with Covid and in both cases I somehow avoided infection. Here is the point of my post: Is my immunity “great” like yours or have I been lucky? I hope it is the former but I worry it is the latter. Be careful because it is impossible to truly know for sure.
Best,
Mark
Hello HopeME
I do not have any intention of not being on guard against covid or any other illness. I do the same things as wash hands, sanitizer and masks that I did before anyone ever heard of covid. The CLL patients have learned as a result of covid that all those shots which were suggested that we take upon CLL diagnoses, do not do us a lot of good. Our doctors would be negligent did they not suggest getting shots because it is better than nothing.
I how ever do not feel it is everyone else's duty to protect me from illness, like wearing masks. The CDC statement that wearing masks was not effective in stopping the spread of covid is very true. How could wearing masks which cover chins and below nose stop much of anything. I do however feel sorry for those people who have been mandated to wear masks 8-10 hours a day while working. If they are not coughing or sneezing, what are they protecting us from? I wear masks because it protects me, not other people, just like I don't touch handrails and etc. Whereas I have not had any illnesses I feel it is due to my due diligence and some measure of luck. Take care and blessings.
Neil: Thank you for that detailed explanation. It underscores the complexity of CLL and how that complexity varies from patient to patient. I’m not sure where you find the energy to do so much research and writing but I’m thankful you are able to do so.
Best,
Mark
Studies have now shown masks are ineffective
nytimes.com/2023/02/21/opin...
Hello MarkoK
Whereas I agree with the study that masks are ineffective, my concern is my personal safety and will continue wearing mask where I feel it will benefit me, rather than being concerned about whether other people are masked or not. I think arresting persons for not wearing masks was beyond ridiculous.
I understand that and may follow that method as well. As someone who listened to the "experts" and went along with the lockdowns and masking mandates I am disappointed that we were mislead about the measures. I haven't worn a mask in months but limit my public activities.
If I am reading it correctly, that NYT article stated that mask mandates were ineffective at controlling the spread of Covid at a population level, but did not really examine whether we’ll-fitted, good quality, properly worn masks protected individuals.
Hi Northland ,
There's some background to this Cochrane study cochranelibrary.com/cdsr/do... referenced in the NYT opinion article of which you may not be aware.
Tom Jefferson, the lead author of the Cochrane study, is a contributor to the right think tank, the Brownstone Institute, which supported the Great Barrington Declaration, so he's hardly unbiased.
Professor Rania MacIntyre slams ‘gold standard’ Cochrane Review mask verdict
news.com.au/lifestyle/healt...
MD David Gorski goes through more concerns about the author of the study here: twitter.com/gorskon/status/...
Neil
Hi Neil - yes, like every other topic I'm sure we can find any number of dissenting opinions on mask effectiveness.
Yes - "What’s more, the analysis does not prove that proper masks, properly worn, had no benefit at an individual level."
Hi skipro. I'm 63 and had FCR back in 2015 but my WBC is starting to climb slightly, and immunoglobulins ranges have dropped. I'm fearful that the CLL is returning. I had Covid twice this past year in 2022 (4 months apart) and got on Paxlovid right away. I do think it helped keep my symptoms minimally. It was like a bad cold and I recovered pretty quickly. I have since stopped wearing my mask except on airplanes and remain alert in being in crowded places.
hi skipro,
My background is that I had FCR in 2008 and went into complete remission. My immune system eventually improved through the years but my iGa started to decline to the point that it is 7 right now. As that was declining I noticed my ability to fight off upper respiratory conditions got worse to the point that this past year I’ve 4 colds that lasted 3 months each. I got Covid twice. Once before the vaccine became available in which my worse symptoms were gastric and being very tired. It lasted 2 weeks but was fairly mild . The second time I got it was last June, 8 months after my booster ( I know I should have gotten another booster but the cold I had prevented me from doing it). Covid that time was mainly feverish. I did take Paxlovid and was better in a week but man my fevers were high!
I work in a busy retail store, I believe that masks work but I get berated by my coworkers when I do so I don’t wear them. But the worst is that I also babysit my grandchildren who are 2 and 7 and are always catching colds and passing them on to me. I won’t stop seeing my grandchildren so I just gotta deal with it. I’m just saying that dealing with Covid for me was actually easier than then the common colds I get. For some reason Covid doesn’t affect my upper respiratory tract like RSV or the common cold does. I started seeing a specialist for my immune system and is undergoing a bunch of different test so hopefully I’ll have more info to help me deal.
So that’s my perspective hope it helps.
Cindy
I had Covid back in mid November. I was given oral medication and some of the symptoms improved but others did not. It is now late February and I still have a runny nose, clogged ears and a hacking cough. I like to think I'm getting better, but its a very slow process.
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