Hello
I just want to share if any one with CLL and get infected with COVID-19
any suggestion to post immune system , support , a special vitamins to take ??
and if he can share with , how did he -she feel during the infection period
thank you ! stay safe ALL !!
Hajtamer,
I had my follow up last week and asked my specialist, keep in mind I am in the northeast in the US and not sure if this is accessible everywhere, I was told if feeling ill to get tested immediately to determine if it was covid and that monoclonal antibodies if given early were having good results in cll patients. I would check with the cll Specialist. Hope that helps
I asked Dr. Furman what could be done if I were to be infected with COVID-19 and what would he and Weill Cornell do to treat me.
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His response was Prophylactic treatment: It only takes two days and is indicated for patients with symptoms that do not require hospitalization. We are currently using bamlanivimab for outpatients and remdesivir, dexamethasone, and convalescent plasma for inpatients.
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The CLL Society has provided this letter for CLL patients to give to ER or local physiscians
cllsociety.org/wp-content/u...
The salient points are CLL Society recognizes the present COVID-19 pandemic can strain limited healthcare resources and may demand thoughtful and ethical triage of the
healthcare team’s time and resources.
Data show that chronic lymphocytic leukemia (CLL) patients who have
symptomatic SARS-CoV-2 infections carry a markedly increased risk of mortality
and morbidity.1,2 The risk of hospitalization for CLL patients who have
symptomatic infection is 90%, and more than 1 in 3 who are hospitalized do not
survive. Therefore, please consider their immunocompromised status and
prioritize their assessment and management when they are asking for your help
with a potential or established COVID-19 infection or access to an mRNA SARSCoV-2 vaccine.
-
Len
Drawing attention to that letter is most helpful - thank you Len.
I was vaccinated then 2 weeks later caught covid from a delivery package. I am stage4 on treatment O +I ... thankfully ibrutinib protected me
Hi Stevesmoth1964- So just checking — 2 weeks after vaccination you were exposed and still later developed symptoms or 2 weeks after vaccination you developed symptoms?
Wondering how you know you got it from a package? Is it possible you were exposed when you went for your vaccine?
Did your doctors determine ibrutinib protected you and how did it protect you?
Just trying to understand/learn more about your experience. Thanks.
2 weeks after vaccination i tested positive on a pre treatment test. Highly unlikely I caught it at vaccination center as I wore 2 masks and a face shield and didn't touch anything. Mild symptoms just a headache. German studies have shown ibrutinib has covid protection properties. So now several weeks later I feel fine but have no detectable Neutralising antibodies
I just see news saying not to worry about transmission packaging. Still I am careful with packaging.
It seems like a lot of people are getting Covid after vaccination. Know it’s not being caused by the vaccine, but after seeing some of the lines at vaccination centers I was left wondering about those being a pathway to exposure...
Had heard theories that ibrutinib may help and know it was looked into last summer as a possible Covid therapeutic.
As to the neutralizing antibodies. Are those what one is supposed to get following Covid or vaccine or both (when not immuno compromised)? I can’t keep it straight these days.
Glad you are feeling well.
I test regularly for IgG trimeric Spike protein antibodies... but nothing. My wife has is positive for antibodies 2 weeks post her vaccine. Also we have friends who have not been vaccinated and they have covid antibodies as they have had Covid19
COVID-19 symptoms still a large different in each person , some they are asymptomatic even ! only the antibodies test detect that they were infected.
If you can share here the link of the resource about the studies that have shown ibrutinib has covid protection properties.
I don't have the links , it came up during discussions with my CLL consultant, he mentioned research in Germany and also USA. In addition on other support groups no one seems to have had severe symptoms who has been on ibrutinib.... but I know that not scientific but also my consultant hasn't seen a single patient affected by covid who has been on ibrutinib
Thanks.
Is the trimeric spike protein the same as the S spike protein I see mentioned a lot? (Apologies for all the questions.)
How do you know the vaccination didn’t diffuse the disease and lessen its impact? Perhaps the vaccine stimulated a response from your T-cells? This seems more likely than Ibrutinib protecting you but of course anything is possible.
I think it was probably a mixture of both. Joining a T cell research project soon , after cycle 6 of my Obinutuzumab
So you were vaccinated while being treated by O? I thought the advice was to get the vaccine 6 months after the completion of O treatment.If you have no B cells to speak of, how can you create antibodies?
Yes. The test i use detects the whole Spike not just a small portion of the Spike.
I was under the impression that none of the available tests are able to measure a CLL patient’s response to a Covid vaccination yet. This is all very confusing.
Thanks
HopeME -
That's correct in the U.S. Unless you're in a vaccine trial, there's no commercially available test for efficacy for us yet.
You can get a Qualitative Spike IgG test from Quest Diagnostics or LabCorp, and pay for it yourself. Qualitative means "pass or fail." But many, if nor most of us will fail it. But that does not mean that we have no protection at all. Even if we had no antibodies at all, we could still have various T-cell response, which is really hard to measure cheaply. Nevertheless, I'm staying home and masking, even when my non-bubble relatives visit.
LabCorp does have a SARS-CoV-2 Semi-Quantitative Total Antibody [164090]:
files.labcorp.com/labcorp-d...
It ranks the result on a scale of 0 to 1.0. At least you'd get a number. But it doesn't just check Spike proteins - so the number would be even lower in people who get Pfizer/BioNTech, Moderna, or J&J, since 1.0 would include the N protein and others.
=seymour=
Hi Seymour
This is helpful clarification about the uncertainty of the situation. I think the next six months will be the most challenging of the pandemic for CLL patients. I received my first Pfizer vaccination several weeks ago and my second will occur this week but I remain hesitant to go back to normalcy despite everyone around me quickly moving in that direction. Just yesterday my wife told me I should do the grocery shopping since I have been vaccinated. I have done 90% of the shopping during the pandemic anyway but her comment was telling. She doesn’t get it despite my attempts to explain the uncertainty of vaccination effectiveness on CLL patients to her many times in the past. My buddies are talking about heading down south for some golf soon and they use the same logic. Why wouldn’t you come? After all you’ve been vaccinated.
Hang onto your seat it’s about to get interesting!
Best
Mark
HopeME -
I really think normalcy will come to CLLers later than for most people. The biggest problem we'll face is explaining why we're still wearing a mask while most others have stopped. I want a mask with the explanation printed on it. We need an immune compromised symbol, I think.
I do think the idea that vaccination brings freedom to travel and unmask is an overreaction. As time goes on, we'll hear more about post vaccination infections and their outcomes. It's not just life vs death, it's life vs. long covid from a mild infection. Not much data on that, especially since the root mechanisms of long covid are unknown.
I'm also waiting to see some in depth studies about whether vaccinated normal people can spreading unknowingly. Note that that is different from showing that vaccinated people can shed RNA - which I believe the can, but duration is in question.
I would feel somewhat comfortable shopping at a store open early in the morning, without many people around, and while wearing a well fitted mask. Keep hand sanitizer in the car.
Stevesmith1964 -
So you have access to clinical testing that most people do not, right?
=seymour=
I have access to antibody testing. Yes
Hi to ad to this Iªm on Ibrutinib since Outober 20 and done 3 sections of Retuximab, so befour goin for the next Retuximab I need to be tested for covid 19 , so last test it came positive to my suprise on the day I only have a conjutivites, normaly the test came via SMS but this time Iªve been tool by my CLL especialist ( is main concern was get way from me ) no consultation, no more Ibrutinib and Retuximab unhold, driving back home we call me ( no more concern with infection ) and we sayed stop take Ibrutinib for a week and then if my symptoms don't change I need make arrengmens to call ask for a prescription and some one to peek it from hospital , so I've been 14 days without Ibrutinib that it been resumed now but I could say that Ibrutinib helps.
thanks for you reply and sharing !
My Mom in Ibrutinib for approximately 1 year and half
she got the positive test of covid just before 2 days symptoms for now is controlled , the specialist advise to continue with the treatment in ibrutinib because it have no effect with covid
I Hope you are doing fine and your health recovered well !
Hi,
I take a daily vitamin and extra D3. I’ve been in remission for over 10 years now, but like most people who had FCR treatment I have a compromised immune system. I caught Covid from my coworkers in November. My symptoms were : started off with a headache that wouldn’t go away. I felt achy and had a low grade fever for a couple of days and nasty GI symptoms. My sinus were very dry most of the time but also runny ( hard to describe) . I lost my sense of smell and taste a few days ( on thanksgiving 😟). All those symptoms lasted about two weeks, but I also developed a dry tickle cough that I still am dealing with. I did not go to the hospital, I had a video visit with a doctor.
I got the antibody test one week before Christmas and it showed that I had the antibodies.
What’s weird is that, since then, I’ve felt the same kind of headache, sinus dryness and tiredness two or three times In the past months following ( lasting a few days each time) and my cough would get a little worse then better but won’t go away. I’m thinking that since I work with the public, that every time I get exposed - I feel this way until my slower immune system kicks in. ( I don’t know for sure that’s what happens but suspect) .
I had my regular 6 month blood evaluation in February and it all seemed to be consistent readings as before.
Well that’s my testimony. I hope you all stay safe!
Cindy
146 studies in PubMed on Ivermectin, see abstract below and check with your doctor:
Ivermectin, antiviral properties and COVID-19: a possible new mechanism of action
Emanuele Rizzo 1 2
Affiliations expand
PMID: 32462282 PMCID: PMC7251046 DOI: 10.1007/s00210-020-01902-5
Free PMC article
Abstract
Ivermectin is an antiparasitic drug that has shown also an effective pharmacological activity towards various infective agents, including viruses. This paper proposes an alternative mechanism of action for this drug that makes it capable of having an antiviral action, also against the novel coronavirus, in addition to the processes already reported in literature.
ALWAYS CHECK WITH YOUR DOCTOR
MY 3 PART PLAN TO WARD OFF A VIRUS-a person would not need all of the priorities for each category, which ones needed can be determined by muscle testing and your doctor. Also there are formulas that contain many of these supplements and herbs such as:
immunitone Plus by Designs for Health.
BUILD IMMUNE SYSTEM
astragulus
echinacea root
goldenseal
elderberry extract
zinc
vitamin C
Lauricidin
andrographis
olive leaf extract
vit D3
mushroom complex formulas
amrit kalash
beta glucans -- super immune booster
PREVENT RECEPTOR SITE BINDING TO HOST CELL
zinc + Quercetin
elderberry extract
lactoferrin
L-Lysine
KILL VIRUSES
vit C IV and liposomal-stays in your body until absorbed, (If you take C in tablets or capsules-you would need to take at least 2000 mg every hour. )
virattack by HerbPharm
lomatium
oil of oregano
olive leaf extract
glycyrrhizin (licorice root)-- kills viruses (can raise blood pressure and so can Ibrutinib-so be cautious and check with your doctor)
curcumin - high doses
VIVI (Systemic Formulas)
Many of these also support lung health and have many other ways of promoting immune health. Systemic enzymes also lower inflammation as well (many chemotherapies use inflammation to kill cancer, so always check with your doctor.
I would not recommend anyone take 2gm oral Vit C every hour. That's asking for trouble. I take 2 gm DAILY and it's sustained release, and I have a known problem with absorbing vitamins/minerals. Animals that make Vit C do it at tissue saturation levels, and 2gm should do it for a 180lb person. Your post makes it sound like 2gm oral every hour is an acceptable alternative to IV infusion under a doctor's care.
I've noted before that elderberry is marketed as a lymphocyte stimulant - the very last thing we need when we have CLL. Likewise, beta glucan and mushroom complex formulas (in which beta glucan is an active ingredient), can boost CLL growth in some of us as one member has previously shared. Long term use of these could speed our time to CLL treatment. Anything that promotes immune health needs to be carefully checked to see that it doesn't do so by boosting lymphocyte production!
Neil
That is why I say check with your doctor.
Given a significant reason for using complementary therapies is that they seem natural and non toxic, surely as a holistic health practitioner sharing advice to a community of people, who, like you are trying to improve their health while living with CLL, it makes more sense to make certain the advice you provide is appropriate for your audience? Saying "check with your doctor" doesn't go far enough, because we both know that some members will accept advice from others with CLL, particularly when they say they are a holistic health practitioner and are sharing their 3 part plan!
Very few, if any of us have doctors/specialists with the time to check all the ingredients you are recommending, so I would say that you have a professional duty of care to do more research. CLL is such a heterogeneous illness, that your personal experience can't guarantee that what you take will be safe for everyone here. That's why we have clinical trials.
Neil
I wonder what % of doctors would be willing to prescribe Ivermectin for this purpose. Some of these stimulate WBC...not good for us right? Also what about strain on liver/kidneys? I'm with you on some of these...I also take NAC...supposedly helps epithelial cells in lungs ...and melatonin. Most docs are clueless on this nutritional stuff. Also the daily cost of this coulf exceed $20/day. Taking 20 to 30 pills a day tough. Easier and cheaper just to isolate/double mask uo.
I wish the pharmaceutical companies would make protocols that can be used for CLL and other conditions so we could get the benefits of the drugs with less complications or side effects. You bring up some good points, it is all about the risk to benefit ratio that each of us and our doctor would have to make a decision.
Not sure what you mean here...we have drug protocols. We are running clinical trials. CLL doesn't have the patient numbers of other cancers, so studies can take longer than other disease states to recruit enough patients to do these studies. Are you commenting on ivermectin (small i, not capital, it's a generic name, not a brand name)? Medications that are generic are not going to be studied extensively by manufacturers. They will lose money if they can't have a patent to recoup the money spent on testing. A university, government, or other group would have to fund such studies.
As far as ivermectin in Covid goes, there are 61 studies I could find. Some are recruiting, some finished:
clinicaltrials.gov/ct2/resu...
For example, a protocol considering that some drugs deplete nutrients, and what nutrients or foods would be needed with that drug to lessen side effects. Imbruvica can cause muscle cramps and high blood pressure-the middle lining of the arteries contain muscle (many other side effects as well) so for the two conditions I use magnesium among other things for both conditions. Other options for muscle pain are stretching, acupuncture, myofascial and trigger point therapy, etc.. I just think it would be great if this type of information was available to patients. Since the drug is working so well for me, I want to do whatever I can to stay on it, so far so good. That is all I meant.
Well, there have been some some done around other medications, like statins. We now know most everyone on a lipophilic one, that gets into many body tissues, needs coenzyme Q-10 supplements. There isn't enough money to fund studies on diets & supplements for relatively small patient populations like ours.... the food studies done for cholesterol and diet was for heart disease, which has many many more millions of patients than us. I agree it would be nice to fund all kinds of studies! But until this society starts spending less on the war machine and starts looking at areas that benefit society, it likely won't get done unless a particular donor has an interest.
newyork8 -
I agree with you on liver and kidney function. How many of us get that assessed, and how often? For me, it's only twice a year in watch and wait.
The issue with ivermectin is that all studies to date have been small, and not well controlled, yet the claims for benefits seem inflated to me and to others.
the-scientist.com/news-opin...
That article mentions some larger trials being done in Brazil and S. Africa through Canada's McMaster University. The issue with these low cost, repurposed drugs is much more important in remote and undeveloped areas where current standard of care, such as monoclonal antibodies, are not at all available. The effects of any of the drugs, including monoclonals, is not at all a cure - it's a reduction in hospital days, and in some cases, prevention of death.
The safety and effectiveness of any treatment in our population needs to be examined carefully, and not assessed via anecdotes or case studies. Treatments need to be compared to properly matched, untreated populations, especially since even with CLL, many of us will survive COVID-19. Survival alone is therefore not proof.
=seymour=
Hi Hajtamer, you can find my previous posts to read about my Covid experience.
I just found it now , thanks
if its okay to ask how do you feel after passing 2 months ? do you still complain of any pain or symptoms ?
Of course, it is ok. Well I have been having all sorts of issues. Insomnia, still no sense of smell but have "phantom" smells- I can smell decay or smoke when they are not there. Lymph nodes got very big but very slowly going back to normal. Fatigue lasted for about 7-8 weeks - that was hard as I have three small kids...tingling in fingers, painful arms, dropping cups of out my hands (very often, thought it was just clumsiness at first) - possibly some neurological damage? It's very slowly improving and all becoming less frequent so hopefully it will all get back to normal. Compared to how I felt, it's nothing really so I'm grateful. Not everyone reacts like I did, there are some members who were asymptomatic or had very mild symptoms.
I have CLL & contracted COVID. My doctor & my oncologist spoke about this, but at the time neither knew what either disease impact was/would be on the other. I continued taking IMBRUVICA. My Lana for CLL are good, though I'm lingering with COVID effects.
Covid infected CLL patients recovered!
UK Zoom meeting - COVID-19 and shielding update for UK CLL Patients
COVID-19 among fit patients with CLL treated with venetoclax-based combinationsAvoiding COVID-19 Infection when you have Chronic Lymphocytic Leukaemia or SLL, by Chaya Venkat of CLL Topics/Updates (speculative article)
COVID-19 Particularly Risky for CLL Patients
