Editorial
Typically, the editorial section of my articles comes towards the end, after I have presented and reviewed expert articles. But, as I discussed in my last article “Mental Health“, this article is going to be different. The format is going to be my advice to you — hence the “Editorial” heading at the top. I want to be sure you understand the difference between my comments and those attributed to medical professionals.
Vaccines
Let me start of by letting you know I got my first shot of COVID-19 vaccine on the 22nd of January. Second dose is scheduled for one month later. It was a simple process. I got the shot, I was told to wait in the sitting area for 15 minutes (to make sure I did not have any unexpected allergic reaction to the vaccine), then I went home. That evening my arm felt a little sore, no more than when I get my annual flu shot. That’s it. No other reaction.
Actually, that is not quite true, there was another reaction: a sense of relief at getting access to the vaccine, beginning of hope that with a little bit of luck and a lot of personal responsibility, I will live to tell the story of how I survived the COVID-19 challenge. Reports that the USA will purchase another 200 million doses of the Pfizer-BioNTech and Moderna vaccines is very good news. It means that we will soon be able to vaccinate all Americans against COVID-19, possibly before the end of summer 2021.
But you guys should be getting the vaccine long before then, you should be getting it like now. Have not gotten your first shot yet? Tut-tut. Looks like you have not perfected the time honored skill of being a squeaky wheel. Your CLL diagnosis makes you a high risk patient, not to mention any other medical issues such as age, diabetes, heart disease etc that you may have. Whine, wheedle, guilt-trip your primary care provider. Get it done!
By the way, your CLL is also very good reason why your spouse / care-giver should be on high priority for vaccination. Missing your kids and grand kids? Make sure they understand that you as a CLL patient cannot afford the risk of infection, they too must get vaccinated as soon as it becomes available to them. No masks, no vaccination = no hugs, no visits, no delicious home cooked dinners, (no inheritances??).
For practical purposes, we have two vaccines that have received emergency use authorization in the USA, and one more that is likely to join the list quite soon.
- Pfizer-BioNTech (FDA emergency authorization granted)
- Moderna (FDA emergency authorization granted)
- Johnson & Johnson (FDA authorization likely in the near future)
Both the Pfizer and Moderna vaccines are what are called mRNA vaccines. How do they work? Think of it this way. There is a serial killer on the loose. Police know what he looks like, want to make sure you have that information as well, so you won’t open the front door if he rings your door bell. You get a public service text message, and if you click on the link it takes you to a mugshot of the murderer. Now you know what he looks like, you can prevent entry of the killer into your home. Refuse vaccinations on principle? Your body won’t be able to recognize the killer when he comes knocking on your door.
RNA vaccines are just a bit of biologic code, a bit of software as it were, that teaches your body’s own cells to recognize and develop antibodies that attack the killer. In this particular case, both the Pfizer and Moderna vaccines teach your body how to recognize and attack the “spike protein” that the COVID-19 virus uses to gain entry inside your cells. Here are some of the pros and cons of the two RNA vaccines:
- Immune response to vaccines involves B cells and T cells. As we have discussed in prior articles and especially in the comments section, how well CLL patients respond to vaccines depends where they are on the trajectory of their CLL journey. Newly diagnosed patients who have not gone through B-cell depleting therapies (think Rituxan, FCR, CAR-T) and still have healthy immunoglobulin (IgG) levels will have a robust response. Our guys who have been around the block more than a few times and have few healthy B-cells left will not get as much protection. But it is important to remember that every little bit of protection helps!
- RNA vaccines have no live components, so there is no risk of the vaccine triggering disease itself. I cannot emphasize this enough. You will not get COVID-19 disease from getting the vaccine. No way Jose, that is just not going to happen. Zero risk of that happening, please take my word for it.
- Development of these two RNA vaccines in record time will go down in history as a major human achievement. RNA vaccines are relatively easy to manufacture, and they have quick turn around time if they need to be tweaked down the road. This is a very important bit of good news, as we will discuss later on in this article.
- Both the Pfizer and Moderna vaccines require booster shots. All of the clinical trials conducted used a two-shot protocol, that is the basis of their submission to the FDA for authorization, that is the basis of their approval. Some governmental and healthcare authorities have floated the idea of making-do with just one shot per person, or postponing the second shot, in order to spread the available vaccine to more people. I can understand the public health policy issues involved, but frankly, that is an argument that I think is irrelevant to you. CLL patients have a hard enough time getting a robust response and sufficient protection from vaccines, as we have discussed before. You guys need both the first and second (booster) shots. I will be keeping my appointment for the booster shot in February. At my age and diabetes as a high risk complication, I cannot afford to get just half the vaccination needed to protect me. Make sure your doctor knows you will need & want both shots.
- Some RNA vaccines require ultra-cold storage making their roll out complicated and expensive.
- There is always worry when we try something new for the first time. This is a first for the human race. I take my hat off to the brave volunteers who participated in the clinical trials that made these two vaccines a reality for the rest of us. Track record thus far has been stellar. Very high effectiveness, far higher than we were expecting in healthy adults. Yes, there have been some cases of adverse allergic reaction immediately after vaccination. That is why I was asked to wait in the vaccination clinic for 15-20 minutes after getting my first shot. I do not have CLL, with all its complications. Are these vaccines of more concern to people with autoimmune diseases such as AIHA, ITP etc.? The honest truth is I do not know. None of the CLL experts know either – at this point in time. Those detailed studies have not been done yet. Here is my take on it: even with reduced effectiveness of the vaccine in CLL patients, the chance of getting some protection is way more important than the risk of adverse reaction. Get the vaccine please, both shots. But make sure you hang around the clinic for the required 20 minutes or longer, after you get the shot.
- Is one of the vaccines better than the other? Frankly, this too is an irrelevant question for us right now. With shortages and a royally messed up roll out of the vaccines, count yourself lucky if you are offered either the Pfizer or the Moderna vaccines. The effectiveness of both vaccines is almost the same, about 95% in healthy adults. For the geeks among you, here is a comparison of the two vaccines, head-to-head.
- If all goes well, Johnson & Johnson’s Covid-19 vaccine will likely be the next one available in the United States. A few days ago Dr. Anthony Fauci said that Johnson & Johnson vaccine is “right around the corner” from seeking emergency use authorization. But it can take several weeks for the vaccine to go through the authorization process and then navigate the logistics of manufacture and distribution. Unlike the Pfizer and Moderna versions, the J&J vaccine is a single-dose vaccine and the company says it plans to manufacture a billion doses. There is also reason to believe it will be a cheaper and it does not require ultra low temperature refrigerators to store / transport it. Bottom line, it will really help vaccinations, especially in more remote locations and poorer countries.
- It takes time for a vaccine to become fully effective in the body, and with Covid-19 spreading widely, it’s important to still try to avoid getting infected during that immunity-building period. I urge you not to get too cocky. Especially with lower level of protection baked in the cake for hard core CLL guys, it is very important that you still practice good quarantine protocols. Masks, social distancing, avoiding large indoor gatherings in poorly ventilated rooms – you know the drill. My guess is it is going to be well into late summer before things settle down enough to return to some semblance of normalcy, if we are lucky. Keep your fingers crossed on that one.
Variants
Viruses are not really living things, not in the way you and I and plants and animals and bacteria are living things. Viruses cannot replicate themselves on their own, they need to hijack the machinery of living cells in animals for this purpose. Once they gain access, they have no other purpose than make zillions of copies of themselves, then go on to infect the next victim in line. Viruses are also very sloppy in how they replicate, lot of errors made in the genetic code from one generation to the next. Corona viruses undergo mutations all the time, about one or two mutations every month or so.
That rate of mutation can change if the virus is wide spread in the community. Makes sense, more people infected and more virus load swirling round in the community, more chances for mutation. Not all mutations are of any significance. Remember, viruses are not really alive. They are mindless, thoughtless little bits of genetic code. Once in a while, a mutation comes along that makes the virus more transmissible or more deadly. This is what keeps virologists up at night, worrying about the next mutation.
I am willing to bet there are dozens of viable mutations of this corona virus swirling around out there, percolating quietly in local communities. But for right now, there are three variants of the virus that are of concern. We are not hundred percent sure where each one originated, but that is not really important. In the common press they are called:
- U.K. variant
- South African variant
- Brazilian variant.
As its name suggests, the U.K. variant is now the dominant strain by far in the United Kingdom. It overtook the earlier version of the virus in very short order and is now spreading through out Europe and the USA. There is no doubt that it will soon become the dominant strain in this country as well. This variant is a lot more infectious, it can spread far more easily from person to person. We are still trying to understand exactly what makes it so. One explanation is that it is a bit more “sticky”, clinging to the cells in your nasal passages and lungs better than the older version. Exposure to even smaller doses of viral particles becomes more dangerous if it sticks around.
The good news is that studies done so far indicate the U. K. variant is not more lethal than the previous version. The vaccines we have now are still as effective against it, convalescent plasma and monoclonal antibody cocktails still work as well against it.
The bad news is also pretty stark. If each person infected spreads it larger number of new victims, pretty soon we have a raging scenario of many people getting infected in a short amount of time. For immune compromised people the increased infectiousness of the U.K. variant means many more chances of getting infected. Our hospitals and healthcare system are already overwhelmed. This puts additional huge strain on available resources. Crowded hospitals and ICU wards means reduced quality of care for the general public. Just because we are going through a pandemic does not mean people have stopped having heart attacks, getting into car crashes and having babies. Everything becomes harder when things are stretched to their limits and beyond.
It is a bit of a cat-and-mouse game. When the virus ups its game, we have to match our level of protection as well. Recent guidance from the likes of Dr. Fauci is to use higher quality of masks, switching from simple cloth masks to the more effective N95 variety. What if you cannot find N95 masks readily? Dr. Fauci says just doubling up two plain cloth or surgical masks worn over one another helps.
The South African Variant
This too has spread from its country of origin and it is definitely here in the USA as well. Projections are that by early to mid summer it will become an important component of the viral mix. Like the U.K. variant, it too spreads faster than the original version of COVID-19 corona virus. With a dangerous twist: When our present vaccines are tested against this South African variant, the amount of effective antibodies our bodies generate in response to vaccination is roughly cut in half. Convalescent plasma and monoclonal antibody cocktails do not work as well against this variant.
The glass-half full perspective is that the present generation vaccines still work against this variant – but with less oomph. In healthy adults, the very high effectiveness of the two RNA vaccines on the market means that even with reduced antibody protection, they are still good enough to prevent infection.
But there is good reason to be worried. Since our guys are starting off with a disadvantage in reduced, effective immune responses to vaccines, it raises a huge red flag. With these new variants, will lower protection levels after vaccination become even lower for immune compromised people? I am afraid the answer is likely to be “yes”. Once again, we have no choice but to fall back on good defense. Avoiding infection in the first place is still our single best choice.
The Brazilian Variant
Brazil got hit with very high levels of COVID-19 infection spring and summer of last year. In some regions, the virus raged unchecked to a level that suggested most people had been infected already and communities were getting to the point of “herd immunity” Once a forest fire burns through most of the easily burned dry underbrush and trees, with no new sources of combustible material, the fire dies down on its own. That is the simple principle behind herd immunity.
What has caused concern about the Brazilian variant is that there have been credible reports of people who had been infected earlier and recovered are getting infected again. The protective antibodies people generated from going through the infection earlier on does not seem to provide long lasting protection from getting infected again. While there have not been significant studies done yet, the logic is inescapable. If recovering after prior infection with the older version of the virus does not provide long lasting protection against a second infection with this new variant, there is good reason to worry that this new variant has achieved some level of ability to escape our present vaccines. The mugshot of the serial killer is not good enough anymore, the murderer has changed his appearance enough that vaccines and antibodies our bodies produce do not recognize the killer sufficiently any longer.
Viruses mutate all the time. That is nothing new. For example, the annual flu virus mutates enough through each cycle that we have to develop a new version for each flu season, we need to get a new flu shot each year. In this war against COVID-19, we have to stay sharp and one step ahead of the virus. As it learns new tricks, we have to up our game as well. The good news is that our newly discovered RNA vaccine technology is much easier to tweak to attack the new variants as they develop. In fact, Moderna and Pfizer are already developing new versions of their vaccines to target the new variant(s).
The not so good news is that developing, manufacturing and re-vaccinating millions of people is a daunting logistic and economic task. The Brazilian variant has already been identified in one or two isolated cases in the USA. But given our deplorably poor level of genomic surveillance (looking for new variants), it may have spread a bit more than isolated cases already. This is a dangerous situation. We need to move, move fast, come together as a country and get our people vaccinated as quickly as possible. If we can reduce the overall level of infection in the community, it will make it that much harder for new variants to spread. It is also a way we can control the development of even more dangerous versions. Virologists recognize we are in a race against the clock. And we cannot afford to let the virus win this race.
“Viral” therapies
We surely live in the age of Twitter and Facebook “medicine”. Even our usage of English language is changing. Back when we were mere spring chickens, “viral” referred to bugs that cause diseases like the annual flu and pneumonia. Now “viral” can be anything that gets a rapid ramp up into our general awareness. This section takes a shot at evaluating two particular drugs that became overnight stars.
Hydroxychloroquine
Like most of you, I watched with amazement as our former President extolled the value of this anti-malarial drug that has been around for a long time. He also declared in a public press conference that his personal physician had prescribed it to him and he had taken a full course of it. Overnight, hydroxychloroquine sales skyrocketed. The drug is manufactured in India (mostly) to combat chronic malaria in the country. I remember when my uncle was treated with it, after coming down with a bad case of malarial fever. I understand millions of doses of the drug were bought by the United States, after President Trump’s declared support. I understand President Jair Bolsonaro of Brazil followed suit as well. Too bad viruses do not respect presidential power or machismo.
Does hydroxychloroquine work? My considered opinion is that it does not. And I have strong back up for that opinion.
Hydroxychloroquine does not benefit adults hospitalized with COVID-19
A National Institutes of Health clinical trial evaluating the safety and effectiveness of hydroxychloroquine for the treatment of adults with coronavirus disease 2019 (COVID-19) has formally concluded that the drug provides no clinical benefit to hospitalized patients. Though found not to cause harm, early findings in June when the trial was stopped indicated that the drug was not improving outcomes in COVID-19 patients. Final data and analyses of the trial, which was funded by the National Heart, Lung, and Blood Institute (NHLBI), part of NIH, appears online Nov. 9 in the Journal of the American Medical Association.
This report is pretty compelling. Since the original fame of this “viral” therapy rests mostly on anecdotal reports, I would like to present this little bit of anecdotal “evidence” of my own to rebut its undeserved fame. Both Presidents of Brazil and USA got infected with COVID-19, mostly because they were not following masking and social distancing guidelines their public health officials were stressing. Hydroxychloroquine did not protect them. And when former President Trump eventually became infected with COVID-19, the crack team of physicians at Walter Reed National Military Medical Center did not rush to give him a fresh course of hydroxychloroquine. He was properly treated with a therapy protocol that had a chance of success, the POTUS protocol we discussed in our first article in this series.
Ivermectin
The other “viral” therapy darling does not fare much better. Ivermectin is an antiparasitic drug that is used to treat several neglected tropical diseases, including onchocerciasis, helminthiases, and scabies. You might have come across it yourself as a component of your dog’s heart-worm prevention medication. Heart-worm is a deadly disease in our pets, no question about it. But dog and cat owners have long struggled with the toxicity of this drug, well documented in this article from the American Kennel Club.
Ivermectin: COVID-19 treatment guidelines
Recommendation
The COVID-19 Treatment Guidelines Panel recommends against the use of ivermectin for the treatment of COVID-19, except in a clinical trial (AIII). Ivermectin has been shown to inhibit the replication of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in cell cultures. However, pharmacokinetic and pharmacodynamic studies suggest that achieving the plasma concentrations necessary for the antiviral efficacy detected in vitro would require administration of doses up to 100-fold higher than those approved for use in humans.
Ivermectin is not approved for the treatment of any viral infection, including SARS-CoV-2 infection. The FDA issued a warning in April 2020 that ivermectin intended for use in animals should not be used to treat COVID-19 in humans.
Jut in case you are tempted to try either of these medications “off label” on your own or with the tacit support of your local doctor, please allow me to try and convince you not to do so. The benefits have not panned out, in spite of getting all this political support. And here is the clincher. Both drugs, given at the reported dosage levels, are particularly tough on the liver. How is that relevant? Very simple: CLL does a real number on liver function. One of the reasons why your regular blood test includes “AST” and “ALT” in the list of things monitored is to keep a close watch on your liver function. Damage to your liver can cause really big problems, especially in vulnerable patients who are already taking a lot of other maintenance medications for CLL and other chronic medical conditions. It boils down to a very simple judgment call. You cannot risk experimenting with fringe therapy options that nibble at the edges, with unproven or debunked benefits and amply demonstrated liver toxicity.
Action Items
- Quarantine, upgrade your mask-up strategy (N95 or double masking), practice social distancing; it will be some time before we can indulge in crowded indoor gatherings. Avoid infection as much as you can, that is your single biggest protection.
- Please get your friends and family members to understand the increased risks you face. Your life depends on their compliance.
- Please get vaccinated, as soon as you can. And get both shots. Don’t worry about which vaccine. All of them are roughly equivalent and good enough for government work right now. Don’t get too picky and thereby lose the chance to get vaccinated at all.
- Stay away from bogus cures. Believe it or not, I got one email from a woman who has graduated from coffee enemas and is now considering bleach suppositories. Seriously? Bleach?
- I have always liked the old saying that when life gives you a lot of lemons, learn to make lemonade. We are surely getting pelted with an avalanche of lemons. Learning how to make lemonade seems to be a good thing to do. Quarantining at home does not have to be totally wasted time. Here is your chance to read all the books you have wanted to read, all the to-do items on your list. Friends you have been meaning to contact would appreciate a phone call, a friendly email or text message. You still need to eat healthy, and here is your chance to become a terrific chef. Quarantine does not mean you have an excuse to quit exercising. Walking the dog is still a good thing to do, for both of you. Going for an evening walk with your Sweetie, holding hands and really talking with each other, really listening – that is still magic. no virus can take away from you.
- Last but not least, we all need to develop emotional coping skills. The “Serenity Prayer” I quoted in my last article is perhaps the best way of putting it. There are some things you can do to survive this pandemic, and some things you do not control. You can choose to get deeply depressed about the things you do not control, or you can develop the skill set that lets you cover the bets that you can control. A happy life is all about knowing the difference. Preaching to myself first and foremost, it is important to value and enjoy the present moment and not worry too much about what may happen down the road. Notwithstanding human hubris, we never did control that anyway. With a little bit of luck, with hard work on all our parts, with sincere acceptance of the fact that each one of us is only as safe as the communities we live in, this too shall pass and we will live to brag about it.
That brings to a close the series of five articles I planned on COVID-19. But I have learned not to say goodbye. I will be around, I will be keeping an eye on things, I will still respond to (some of the many) emails I receive, and especially comments on this website where my responses reach a larger number of readers. As things develop, and lord knows we are on a very fast moving roller coaster and it is almost guaranteed we will be caught flat footed more times than we want to be, I will do my best to write about it. In the meantime, stay smart, stay informed, stay healthy. There will be a time when we will look upon this pandemic in the rear-view mirror. The trick is to learn how to make it to that sunny day.
Be well,
Chaya
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27 comments on "Vaccines, Variants and “Viral” therapies"
I am glad you are back. I have missed your commentary.
I don’t know how you feel about suggesting that CLL patients have an antibody titer test after receiving a COVID-19 vaccine, but I was curious about my husband’s antibody response and so suggested to my husband that he seek one from his doc, Jennifer Woyach. He is the first of her patients to have received both doses of the Pfizer vaccine, and she ordered the test last Wednesday. He has NO antibodies to COVID-19. None. He’ll repeat the test in another month, but we are not too hopeful. He was diagnosed in 2012, treated with 1.5 cycles of BR before having to drop out due to toxicity; treated for 4 years with ACP-196 (alcalabrutinib) before developing the C481S mutation; and has been in a Phase 1 trial of LOXO-305 for the past year. He is FISH negative and unmutated IGHV. He participated in an NIH study of how well CLL patients on BTK inhibitors responded to the Shingrix vaccine — not too well — so this result was not entirely unexpected, but it was still disappointing. We’d be interested in any thoughts you have on next steps. Try a third dose of the Pfizer vaccine? [Probably wouldn’t work, but you never know.] Try a non-MRNA vaccine? [Probably would not work any better than Pfizer’s.] Blame LOXO-305? [Not sure what the remedy is there… switch over to a venetoclax combo and try again with another vaccine?] Wait a year or so and petition for IviG? [Maybe that’s the best bet?] We would be interested in learning your opinion. I very much doubt my husband will be the only CLL patient in this boat!
In any event, your advice to CLL patients (and their household members) that they need to continue taking precautions seriously is certainly excellent!
Chaya, it’s delightful to see that you are writing again, and at such an important time. I have missed you. Welcome back! And keep posting.
I got my first vaccine last Monday and felt like I won the lottery!
Charlie
Linda:
Thoughtful comment. Your husband is fortunate man to have you in his corner.
Getting an antibody titer is a good idea – if you can get it, if your doctor is responsive enough to get it done. Unfortunately, we are dealing with a crisis situation here and healthcare workers / systems are either overwhelmed or just not responsive enough in real time. I worry that most long haul CLL patients will be in the same boat as your husband.
You are right, third vaccine shot is not likely to give him much joy either, and if the high potency RNA vaccines cannot get a response, the likes of the J&J and Oxford vaccine are probably not going to be able to do much either. Yes, see if you can get the Regeneron or Lily monoclonal antibody cocktails. They are available, just need a strong spouse / advocate to push for it. I am optimistic this would help in the short run. Down the road, convalescent plasma or garden variety IVIG treatments will help, when we have large segments of the populations who have been vaccinated or infected and recovered. For right now, getting the vaccines we do have, quarantining and preventing infection are the best options we have.
Charlie:
That is exactly how I felt, grateful for getting my first shot of the Pfizer vaccine. Welcome to the club. We have to do the best we can, we have to hope for the best. And we also need to stay away from silly hype or Pollyanna style denial. This is virus is dangerous, especially to long haul CLL patients.
I can use all the help I can get from you guys to get this conversation going. I wish I knew how to get this message go “viral” within our community. For starters, please post your comments, spread the word among other CLL patients. I came out of retirement to do this because it was that important. I need you guys to get over your “shyness” and start talking about this, out in the open.
I had my first shot of the Moderna vaccine yesterday and I was thrilled to get it. Other people are airing also spoke of how grateful they were to get it . Last evening my arm was sore and itchy and I felt like I had brain fog. Today I feel stellar! Get the vaccine!!!
My favorite line from the article above: “…even with reduced effectiveness of the vaccine in CLL patients, the chance of getting some protection is way more important than the risk of adverse reaction.” And the chance of getting some protection is way more important than the slight risk of unknowns down the line. It’s the very real known risk versus the unlikely unknown risk.
Linda:
Is there a possibility that your husband did produce some antibodies but just not enough to be detected on the test ? Is there also a chance that the vaccines still added protection with T cell immunity? Both my young adult children got covid while attending college and only my daughter developed antibodies after recovering from the virus. Neither of them have been reinfected even though I’m sure they are constantly exposed given they are college students. I read that there are other factors that go into “ immunity” other than antibodies. This might not be applicable here but just trying to understand the accuracy of the antibody test. My husband is 59 and has been on ibritinub for past 8 years. He has had no prior therapy. He’s had 1 dose of Moderna and getting 2nd mid February. I’m hoping he gets some protection too. His flu shots seem to work as he has dodged the flu and one other infections every year. Trying to be hopeful. I think it’s worth asking to see if the vaccines still could have had some impact that’s not measured by the test you did.
Laura
Linda and Chayat:
Is there a possibility that your husband did produce some antibodies but just not enough to be detected on the test ? Is there also a chance that the vaccines still added protection with T cell immunity? Both my young adult children got covid while attending college and only my daughter developed antibodies after recovering from the virus. Neither of them have been reinfected even though I’m sure they are constantly exposed given they are college students. I read that there are other factors that go into “ immunity” other than antibodies. This might not be applicable here but just trying to understand the accuracy of the antibody test. My husband is 59 and has been on ibritinub for past 8 years. He has had no prior therapy. He’s had 1 dose of Moderna and getting 2nd mid February. I’m hoping he gets some protection too. His flu shots seem to work as he has dodged the flu and other infections every year. Trying to be hopeful. I think it’s worth asking to see if the vaccines still could have had some impact that’s not measured by the test you did.
Laura
https://www.cnbc.com/2021/01/12/covid-vaccine-labcorp-ceo-says-recipients-dont-need-antibody-test-afterward.html
Good article addressing my above comments.
I’ve had the first Pfizer jab as part of a trial at my hospital here in the UK. They will monitor what happens to CLLers’ antibodies from the vaccine and based on that we might be offered MAs – Monoclonal Antibodies in the future. Then we may be able to step outside our front doors free from fear.
Hi Everyone and Chaya,
Indeed, welcome back Chaya, you have been missed. Your recent articles inclined me to ask my doctor for the monoclonal antibody cocktail and he told me that treatment has not been approved for non Covid-19 patients as a prophylactic.
We do have an excellent relationship and your comment ‘…They are available, just need a strong spouse / advocate to push for it.’ leads me to think that he can order it if he wanted to.
He is the Onc/Hemo Head at the VA Hospital in Lexington, KY.
I was diagnosed in 2008 at 54 years old. I had massive lymph nodes appearing, seemingly overnight. I went to my local small town dr. and he ordered CBC and results were CLL, non-mutated, Zap 70 positive. He wanted me to start treatment at the local small town onc center.
That wasn’t good enough for me. We uprooted everything and moved to San Diego to see Dr. Kipps at UCSD. He was great!
He ordered all the tests and they discovered a very small lung cancer in my upper right lobe. That, of course, had to be dealt with first. My upper right lobe was removed late in 2008 and I achieved complete recovery. No more lung cancer!
Dr. Kipps waited until I was fit enough to start FCR early in 2009. But, due to toxicity, had to quit after 6 rounds. However, I did achieve remission.
I had to leave Dr. Kipps for the VA in 2012 because my insurance ran out. But my remission lasted until 2014 when I had BR for 4 rounds and had to stop because of toxicity but did achieve remission until 2019.
I got a bad case of the Shingles in August 2019 and wanted to wait for treatment until the Shingles subsided. The Shingles, however, had a different agenda and didn’t just go away. I decided to start ibrutinib, anyways in September 2019.
I got a good response and everything was rosy, except the Shingles. However, by November my blood pressure spiked to around 180/90 and my primary care upped my Lisinopril to 40 mg a day from 5 mg a day.
No help there and I did more research and found the ibrutinib was the culprit I had to let my onc dr. know it was the pill that caused my blood pressure to go higher. He did some research and found I was right. Needless, to say, I was furious for having to tell HIM! And I told him so.
I did get a remission, by the way.
Since then we have had the very best Dr/patient relationship. If he can order the cocktail, I am sure I can get him to do it. I just need to know if he is able to in spite of the non-approved use. Please, let me know.
We are going to have to start treatment again as my CBC is indicating I am coming out of remission.
The onc dr is going to have me take Acalabrutinib when the time comes.
I must report, though, that I developed PHN from the Shingles and without proper medication, the pain is unbearable.
I was also furious for the pc dr and onc doc for not suggesting the Shingles vaccine. I had heard about Shingles, of course, but never imagined it would happen to me nor how severe the pain would be. With my pre existing condition you would have thought my Drs. would have made getting the partially effective vaccine a prority. I let them know they, again, failed me.
Sorry for the rant. But if my fellow CLL people aren’t getting the care they need, step up and DEMAND, be heard! I have to go to the VA because I don’t have the resources to go anywhere else. But, all that said, my overall experience with the VA has been very good.
Chaya, please let me know if the Dr. can order the cocktail in spite of the non-approved use.
Thank you very much.
Rick P.
P.S. I did receive the first Pfizer vaccine and due for my second on February 3rd.
Rick P.
Chaya, thanks for the excellent editorial. I love your suggestions for making lemonade out of pandemic lemons!
I have a suggestion for you. How about working on an essay on the various strategies that are being used to develop COVID-19 vaccines? There is so much misunderstanding circulating.
I had my first Pfizer vaccine on 1/20 and I had a reaction. I had my shot at 8:30 and by 5 PM I got the chills, a vicious headache. I took two Advil and once it worked, I started sweating profusely. By the next morning I was fine, but a week later I went through the exact same issue.
My question if anyone can answer it, is that I heard from a Doctor that the vaccines effectiveness is greatly diminished by taking Advil afterwards. I am very concerned about getting the second vaccination about how to deal with the reaction. I got the Pfizer vaccine and I hear that the second one is worse than the first one. Can anyone advise me as what the best help will be to alleviate my symptoms? if I can’t use Advil, will Tylenol help or is that not allowed as well.
Thanks
Anne:
Vaccines trigger an immune response, oftentimes accompanied by inflammation signals that include fever, chills, body ache etc. There have been some reports that taking NSAIDS such as Advil or fever reducers such a Tylenol ahead of the vaccination may interfere with the process of developing good level of virus fighting antibodies. But most physicians seem to be OK with their patients taking Advil or Tylenol after the vaccination, if patients develop symptoms such as you did.
The honest truth is that we do not know for sure. It is one more of those areas where concerns are outstripping factually robust clinical trial information. I can understand your concern. I will keep digging into this issue and if I find anything useful I will be sure to let you guys know. Right now the research pickings are slim at best. Here is a link in Journal of Virology that has a few details for the geeks.
https://jvi.asm.org/content/early/2021/01/14/JVI.00014-21
Chaya:
Thanks for doing this for us again. In the world of competing/conflicting/debateable “facts” your style of presenting a combination of real information along with your considered opinions helps us separate (at least in our own minds) facts from fiction in a way that engenders confidence in the messenger. Regarding Hydroxychloroquine: Yes their was/is “political support” (short of “extolled the value” in my opinion) but their was also a lot of “political opposition” that infected the science “experts” just because of who was wondering out loud about HCQ. Who right or wrong not the point – the point is a potential treatment got irrationally political causing people like myself to lose confidence in all the “experts”.
Your latest information partially moved my thinking away from HCQ. However, th day after I read your latest post I learn American Journal of Medicine recently posted another limited study confirming safety and suggesting it is likely beneficial for early onset. I not know the “truth” nor advocating either way – the science is still evolving. My goal (which matches your new goals) is to get more pro-active in having a plan of attack as I don’t/won’t have access to the “presidential protocol”. HCQ treatment at/if Covid onset still on my list of potentials (yes, rethinking/looking at your liver comments with thanks).
We also got our vaccines, and following all/most guidelines and because of you are re-engaging with doctors to better prepare proactively with health care providers so can have confidence in at least initial plan of attack. I want to have confidence in a plan – before in the middle of Covid – recognizing life isn’t permanent. Thank you for the info and the advice – I trust you most when it comes to CLL.
Ken
Ken:
Thoughtful response. I am glad you are planning ahead. Stay smart my friend.
Dear Chaya,
I read all of your recent articles with great concentration and I am *very* thankful for the very valuable information that you gave to us CLL patients. I did not discover a single “mismatch” in your articles comparing it to the information I gathered through various readings of my own concerning the topic.
I am looking forward to my first vaccination. Unfortunately, I am living in Germany and since Germany is part of the European Union (EU) I will have to wait probably until fall/2021 until I receive my first shot. Nota bene: As a CLL patient! My wife will probably be vaccinated not before 2022.
The EU ridiculously tried to save money but the fact is: Just a two day lockdown costs more money that a maximum order of all possible vaccinations offered last year!
The next issue is the vaccination typus: I am envious that you (in the US) have the “difficult” choice between two mRMA vaccinations (Pfizer/BioNTech and Moderna). I would not hesitate a millisecond between both options, because both are very effective! But AstraZeneca has currently not been approved below age 65 in Germany and below age 55 in Italy. I definitely want the mRNA stuff! :) Preferrable from BioNTech just 20 miles away from my home.
Maybe I should become an US citizen after – thankfully – Mr. Trump is history… ;)
Best regards,
Jens
There is a comment here about no antibodies after the two shot covid series. I am worried that none of us with CLL will produce antibodies. Could you possibly start e thread where CLLers could post their antibody results after getting the two Pfizer or Moderna sots? It would be helpful if the responses were in one place for us to view. I’ve only got the first shot but do plan to get antibody testing a couple of weeks after the second shot.
Thank you for keeping us informed.
Cathy:
It is not that simple. Far from it.
While virus neutralizing antibody levels (“titres”) are one indication of protective response after vaccination, it is by no means the only component of protection against COVID-19 virus. In addition to generation of antibodies to fight against pathogens, the human body also has cellular defenses that are not measured by simple antibody titres.
There is the further question that is giving all virologists nightmares, namely whether the virus will (or has already) developed ways of bypassing the antibodies developed by prior versions of vaccines.
Add to the mix the ongoing concerns regarding the reliability and accuracy of antibody titre tests and the results they produce during these chaotic times, and we are rapidly getting to a point where knowing this simple number – your antibody titre – is not very useful. In fact, in my opinion, it has two serious downsides: if the titre is too low, people are likely to get worried and depressed. On the other hand, if the titre is high, they are likely to read too much into it and get cocky. Neither response is productive.
For those of you who would like to wade into the complex field of how immunity works in CLL patients, here is an excellent article for your reading pleasure:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7084946/
Thank you so much for sharing your knowledge and support through the 5 articles. Any way you could just poke your head in the door once a month or every two and just let us know how you are doing?
I was diagnosed with SLL in 2010 and I am still on W&W. I was first diagnosed with Diffused after needle biopsy and had the port put in to start chemo, BUT because there were also SLL cells present they wanted to make sure they gave me the right Chemo drugs. (Their words) This hesitation made me decide to get a second opinion at MD Anderson. Their conclusion after re-running all the tests was I had SLL/CLL with a small amount of Diffused cells and should be monitored every 3 months. Well those 3 mo visits went to every 6 till now I go every 2 years and get my blood checked every year and we keep an eye on things. Over my W&W decade, your site has helped me more than you will ever know. Thank you for that. God Bless you!
Sincerely, K Beale
Just received notice that I can get the Pfizer shot in two days. I was hoping for Moderna. What I have heard about people taking Pfizer is a bit concerning. I also read that it was possible to develop and autoimmune disorder with either one. Not sure how high a risk that is. I know I am suppose to take the first shot available but what is your feeling on the difference in side effects between the two vaccines. Also I called Ohio State James Cancer Center to get answers but they haven’t had much feedback. Dr Byrd is sending out orders to get an antibody test two weeks after his patients get the second shot. He is trying to create a data base on this information. I would be interested to hear how people have reacted to second shots and the type of vaccine they got.
MHinkson
There is no (repeat, NO) detailed information on how CLL patients respond to these two vaccines, in the sense that one is better than the other. My advice is to take the vaccine you are offered. As for autoimmune disease, same logic holds. It is a case of weighing risks versus rewards. Please take the Pfizer shot, and get the booster when it is scheduled. I too got the Pfizer first shot, waiting for the second shot on Feb 12.
Chaya
Thank you for your response. I will get the shot. So many unknowns and concerns that it sometimes clouds my judgement and common sense. I appreciate your input.
Chaya
I found this article and would appreciate your thoughts. Basically after the first dose you have no immunity at all until over 2 weeks. And after that Pfizer is only 56% until the second “booster” shot. It is still possible to catch the virus during this time. So you have to be careful. Moderna is actually better and gives about 80%l up to the second shot. They also discussed the other vaccines like Oxford-AstraZeneca. So it is imperative that we continue to keep the protection practices in place. Pretty enlightening.
https://www.bbc.com/future/article/20210114-covid-19-how-effective-is-a-single-vaccine-dose
(Got my Pfizer shot this AM)
Hi Chaya,
I’ve been a longtime follower. My CLL journey has been comparatively uneventful to many others. Dx at 32, TP53 mutated, first line therapy of Ibrutinib for 7 years, relapsed in 2019, switched to Venetoclax and have been MRD- for about a year since then. Two weeks ago, I received Moderna’s vaccine #1 and a week later I write you from the hospital where I’m receiving treatment for ITP after my platelets tanked from a consistent 100K+ to 6K. Two doses of prednisone has me around 15 now. The first physicians were quick to dismiss vaccination as a possible cause, but CT was completely normal, last flow showed 0 CLL and I’m not convinced of coincidence.
UPATE: I’m out of the hospital. Treatment consisted of two rounds of IVIG and 4 days of Dexamethsone (40mg) with over 36 hours off, my platelets have recovered to about 66K and seem to be holding their own.
This article on the subject came out on 8 February.
https://www.nytimes.com/2021/02/08/health/immune-thrombocytopenia-covid-vaccine-blood.html
Bottom line–examine yourself closely for unusual bruising, bleeding, red spots etc. and I would recommend a CBC before the vaccine if you can.
Kind regards,
Dave Marone
David:
Thanks for accepting my suggestion and posting your story on the comments section. Your email to me was sufficiently of interest that I have decided to write about it, you are one of the two patients I refer to in my latest article.
Thanks again.
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