I am concerned about taking the Covid19 vaccine with this CLL and compromised Immune system. They have me on 500 mg Vitamin C. I am also a Diabetic, being managed, and have to take 81 mg aspirin. Taking Gabapentin for lower back.
CLL and COVID19 Vaccine: I am concerned about... - CLL Support
CLL and COVID19 Vaccine
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Raven305
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Having Cll is all the more reason to have the vaccine than not. The currently approved covid vaccines are not “live” vaccines, meaning it is impossible to get covid from the vaccines. Most all top Cll doctors and major cancer centers recommend cancer patients take the vaccine.
By some reports, people with blood cancers have more than a 30% chance of dying from covid. Covid is a way, way greater threat to you than the vaccine.
You should consider asking your doctors opinion on this. Our doctors are generally in a better position than we are to balance the risk of having the vaccine or not. The Cll doctors at MD Anderson, where I treat, all recommend the vaccine.
Thanks. That helps with my decision to go ahead and get vaccinated. Have a good day.
Jeff, I read that although the vaccines are considered to be non live vaccines, there is a catch. The adenoviruses in the AZ, JNJ, SPUTNIK etc. are not totally incapable of reproduction. There is a norm, and if the number of repruduction capable viruses is below it, the vaccine is considered OK. Apparently the EU norm is stricter than the Russian norm, so in the Sputnik there can be more capable viruses than in AZ. Nevertheless a minuscule amount can be there. This is not a problem for non CLL patients but I am not sure how much of a problem it can be for CLL patients. The mRNA is safer from this point of view.
i don't expect to develop anti bodies to covid withwhat i have and drugs i use. I still expect to get the vaccine though
Hi Raven
I’ll add to Jeff’s comment and say that the CLL doctors at Dana Farber also wholeheartedly recommend the vaccination. There are a tremendous amount of intelligent and patient focused doctors and researchers at those institutions. I have received both Pfizer vaccines and had very little side effects. I think you will feel better after you have your vaccination complete.
Good luck,
Mark
NewdawnAdministrator
I have a very low immunoglobulin (antibody) count and am also diabetic but have had both doses of the Astra Zeneca vaccine. CLL and diabetes intensify our risk from the virus so it’s good advice to have it. In truth, I felt pretty unwell after the second jab but I consider it worth it for any possible level of protection.
Incidentally, has your doctor prescribed the Vit C for you? I’m just curious if there’s a specific reason for it because I have read research where Vit C is used to lower blood glucose levels and wondered if this was the reason in your case.
Also...a warm welcome to the site Raven. I see you just joined us today 😊
Regards,
Newdawn
lankisterguyVolunteer
Hi Raven305
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This reply may be useful for you: healthunlocked.com/cllsuppo...
Then please read the entire thread & other replies.
healthunlocked.com/cllsuppo...
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The key point for your case: Dr Furman believes we all should get vaccinated as soon as possible, because the vaccines will likely reduce the symptoms and reduce the risk of hospitalization & death. The vaccines studies looked at preventing all symptomatic illness. Having a mild case instead of a severe case is still a tremendous benefit.
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Len
My vote is get the shot. It is not the live virus. GETTING COVID IS THE LIVE VIRUS!
Sandra😊
I have had the virus and still having some long haul symptoms. Not getting vaccine.
There are reports that vaccination reduced and even eliminated long haul symptoms for some.
npr.org/sections/health-sho...
Perhaps you can reach out to Dr. Iwasaki to get updated whether it might be of benefit to you. 🙏🏽🙏🏽
I’ve heard that too but i also heard some have bad reactions. It’s one if those tough calls. I have fibromyalgia , osteo arthritis and terrible fatigue. Not on any meds for CLL yet. Most of my iron levels went down after having covid. Did two iron infusions over a month ago so i can’t wait for ny next blood test but feel no better.
Your specialist is the best person to ask if the vaccine will be of any concern given your overall health issues...
Welcome, Raven! Sandra😊
I'm a Cll'er and have had both doses of the vaccine. For me it wasn't worry at all, after all, I would rather have side affects than Covid, which would be far worse in our condition. I had a reaction for 24 hours on both occasions, but nothing I could not cope with. To be honest, I was worse after each dose of Chemotherapy for CLL a while ago.
Why are you on Vit C? I read it's not good for CLL patients. Much better to get it from food. Think red bell pepper.
The vaccine is experimental in stage 1. It’s still not known what the side effects are long term. This concerns me plus the fact that in CLL patients (who were just recently tested) have found it to have just a 20-30% efficacy. My doctor is ready to give me ivermectin if I test positive. I’d rather take a safe drug than the vaccine. I take 2000 iu Vit D3 and 50 mg zinc daily. (Not to mention that I still have to mask and social distance; so there is no payoff to me)
Also, my cousin is an ER doctor snd administers ivermectin regularly to Covid patients with great results while other patients treated by other doctors worse.
It’s proven to work and it’s a harmless drug just like hydrocloroquine.
They are inexpensive drugs that have been around decades. Takes frequently, I might add in other countries, just as we take aspirin.
Big pharma doesn’t want hospitals to use these drugs because there is no money in it for them. They want a more expensive drug and they are huge donors to major hospitals. So they have some pull.
Here’s what’s happening now in a Chicago suburb:
twitter.com/Covid19Critical...
Good luck whatever you decide.
Surely it's better to have the vaccine, which has been through rigorous testing and clinical trials, even if efficacy is lower in our group, than to take a chance with a 30% risk of dying.Hydrochloroquine was proven in trials to be ineffective and not everyone is lucky enough to be able to access ivermectin (even if to works).
The best way to avoid these dilemmas is to not catch covid - either by shielding or building antibodies in the only safe way, via the vaccine.
Jackie
It takes over a decade to test vaccines. It’s too new. If you go to America’s Frontline Doctors website you’ll see board certified ER doctors who regularly prescribed Hydrocloroquine to Covid patients and the improved. Same with ivermectin. The stage 3 studies on the jab have not even started. That’s when they look at other diseases and how it effects them. It was emergency use and still is. I’ll wait a few years. I think it is sinister to listen to these “world leaders and celebrities” tell us to just get it snd it’s safe! Do they know that? Who the heck are they to tell me what to put in my body. I’ll do my thinking for myself. I’m not going to be one of their sheep.
I agree. I also decided I’m not willing to take healthcare advice from people who think the world is overpopulated (the WHO, Bill Gates, and the like)!
Are you listening to medical and scientific experts around the world, all of whom say get the vaccine.
I have never seen the WHO say that the world is overpopulated but if they did, why would they want people vaccinated when the virus could do a good job of reducing the alleged over population.
I am struggling to understand the logic here.
It takes decades to test a vaccine, but drugs that has not been tested in vivo (ivermectin) and/or have inconclusive results in studies within the last year is a safer option if you get infected?
news24.com/health24/medical...
The vaccines are now field tested with millions, and yes there have been a handful of side effects. However, the results are outstanding and the medical profession highly recommend getting vaccinated.
But that is not good enough in your opinion.
The drugs also have been tested (not yet for decades either) and the results are inconclusive. They haven't even reached a large scale stage 1 study, and are not recommended except in emergency situation.
Yet that is what you are not only pinning your hopes on, but also recommending to others
All because the vaccines haven't reached stage 3 study!
The virus has a 30% mortality rate for those with blood cancers, and the two drugs that you are believe are not even tested for cancer patients, and were not designed or tested as anti-viral (they work against parasites).
Yet you have faith in those...
I am on Indian origin, and all the drugs you mention plus many others (remdisivir first and foremost) as well as plasma therapy is being tried on desperately ill (otherwise healthy) patients. There is no clear indication that any of those work, and the situation is getting bad to worse, and infection and transmission rates are increasing.
While Israel and UK data shows that the vaccines work in reducing severe cases and mortality, and the infection and transmission rates are reducing.
But you think everyone who is taking a vaccine is a sheep,
These are unsettling times, and we all are trying to figure out how to keep ourselves and our loved ones safe. There isn't much certainty, so we all are mostly latching on to what we feel is right.
You do have the right to decide for yourself, but it boggles my mind that people can still be dead set against a low risk preventative measure (vaccination) and think that high risk infection and unproven intervention (your drugs of choice) is a safer option.
At the very least, reach out to these doctors you trust and ask them if they have started any large scale stage 2 tests of these 'wonder' drugs, or are they merely using them as drugs of last resort/salvage therapy on patients with severe symptoms.
Stay safe, and I sincerely hope that no one ever gets to learn first hand whether these work or not...
I personally, have taken both shots of the vaccine already and will take the booster whenever that is made available.
Same as for every other vaccination, to assist my compromised immune system.
I don’t care if you get the vaccine. I’m not going to at this time and that is my choice. Yes, I’m skeptical, the medical profession has flip-flopped on a lot of things. It’s called “practicing medicine” for a reason and I don’t want them practicing on me. Maybe I’ll change my mind in the future.
I do agree that the messaging especially by the governments have been sub par, and caused quite a bit of confusion.Covid is still a new disease and much remains unknown but the hysteria created my politicians and sensational news media has further muddled the exploratory findings by the medical community...
The way I am trying to make sense of it all and attempting to stay safe is prevention.
1. Relocate from hot spot (if possible)
2. Wear a good quality mask (N95 or FFS 2)
3. Maintain social distance
4. Remain outdoors as far as possible when picking up groceries or other items (curbside pickup)
5. Wash my hands when returning back home
6. Get vaccinated
This is not just for covid it works for all kind of airborne and surface germs.
I had to do this since 2019 (after my stem cell transplant), so guess I was well prepared for covid!
What I am struggling with is the lingering vaccine hesitancy.
Most of us do not hesitate to take the flu, measles, hepatitis and other viral, bacterial, fungal and other pathogen related vaccines.
The covid vaccines might be new, but more than a billion have been administer to date. And even if someone is hesitant about the mRNA vaccines (new technology, but also had the Nobel prize in 2006 for its potential for revolutionary applications), the AstraZeneca and J&J vaccines are built on well established technology.
In my mind, low risk prevention trumps high risk treatment.
Furthermore, there still isn't any established treatment for covid (there is some promising findings with monoclonal antibodies), so the infection and any present treatment is rather high risk.
What we choose, is always our own responsibility.
And forums like this helps us make informed choices.
Very much like you, I would continue to keep an open mind.
I just choose, based on my understanding of the information available from trusted sources, to take the covid vaccinations (I took the AZ vaccine). 🙏🏽🙏🏽🙏🏽
Yes, indeed. The reason they push aside quality treatments like Ivermectin (see Dr. Ryan Cole on this) is because it’s unethical to push for a vaccine when viable treatments are available. This is NOT technically a vaccine, it’s an experiment. You are the experiment. Take the so-called vaccine if you want to but, I’m going to pass for now!
Mmmm, not sure where you've got this so called 'experiment information' from.
Ivermectin is not available to everyone so it's not a viable alternative.
Viable treatment for covid...
Amazing that Dr. Cole seems to be the lone genius who found a 'viable treatment' without any trials (experiment as per you), while even the pharma company that makes this wonder drug aren't even conducting human trials to prove the efficacy of these veterinary anti- parasitic drugs against covid in human beings.
The medical community opposes usage, while politicians promote these
newsinfo.inquirer.net/14264...
The choice is still yours about who to trust, but I sincerely hope you ascertained the evidence for 'quality viable treatment' before taking drugs designed to deworm dogs. 🙏🏽🙏🏽
He’s actually treating patients with Covid successfully with ivermectin and he’s not the only one. You do you, it’s a choice
No offence meant to you, but Dr. Cole is also 'experimenting' with an anti-parasitic drug to treat viral infections when it is not an established practise.
Just like the vaccines are an 'experiment' in tamping down the spread, although these went through rigorous though expedited testing protocols.
That is how science progresses.
What I don't understand is why you are recommending Dr. Cole's experimental treatment to help save lives while condemning the vaccination 'experiment' as unethical...
I would rather take low risk preventative measures, than have to take a high risk untested treatment for a virus that puts people with CLL in the highest risk category.
FYI - ivermectin won the Nobel prize in 2015. I don’t believe it’s junk science for doctors to use it off label, especially when they have had success with it in the fight against Covid. India uses it as a preventative. Yes, they’re having a surge in cases, but, their worst death day has not been as high as our worst death day, they rank 116 out of 222 countries for deaths per million AND, they have 4 times our population!
The NIH is yet to give Ivermectin a green light as a Covid treatment.
“There are insufficient data for the COVID-19 Treatment Guidelines Panel (the Panel) to recommend either for or against the use of ivermectin for the treatment of COVID-19. Results from adequately powered, well-designed, and well-conducted clinical trials are needed to provide more specific, evidence-based guidance on the role of ivermectin in the treatment of COVID-19.”
covid19treatmentguidelines....
A summary of the data that influenced this recommendation the most is provided:
covid19treatmentguidelines....
And, yet, everyone is encouraged to take an experimental vaccine that has not been approved by the FDA.
This fact check updated by Reuters four days ago makes it clear that the Covid-19 vaccines that have been approved for emergency use in the US are not experimental.
No offence meant, Bunnie1 but if awards are a criteria, here are some stats:1. mRNA technology inventors got a Nobel prize in 2006
nobelprize.org/prizes/medic...
2. The inventors of the mRNA vaccine (and Bill Gates) are the top contenders for Nobel prize in 2020
timeshighereducation.com/ne...
3. The co-inventor of the mRNA technology, after nearly 3 decades of being ignored by academia and actually demoted, has since 2020 been given at least 8 distinguished awards.
statnews.com/2020/11/10/the...
4. Ivermectin inventors got the Nobel prize for the creating a drug for parasitic infections
britannica.com/science/iver....
That does not necessarily make it an effective drug for viral infections in general and covid specifically.
I won't be prescribed penicillin or ivermectin for the flu.
Similarly, unless ivermectin is tested on a large scale to be effective for treating covid, it remains an untested and experimental drug for emergency treatment of desperately ill patients.
Nobel prize or not.🙏🏽🙏🏽🙏🏽
Ivermectin is still at in vivo test for covid in human beings
sciencedirect.com/science/a...
and the question about it being safe is still unanswered and there are still no large scale tests yet.
Hydroxychloroquine is not safe, and in fact the advisory states it is not recommended as the risks outweigh the benefits.
medicalnewstoday.com/articl...
The vaccines cleared stage 3 tests, and the real world results from mass immunization in Israel and UK are outstanding.
So far, the results seems quite clear to me.
Long term effects of any of these is unknown (we only have a few months of data for the vaccine with positive results, and about an year's data of experimenting with anti-parasitic drugs with inconclusive results).
'Big Pharma' will make money either way based on that perspective, but if you don't even trust the doctors and the medical community for advice, and think that the courts know better (same courts that struck down mandatory mask requirements), I can only conclude that you think the virus is very law-abiding.
I prefer to trust the medical research community.🙏🏽🙏🏽🙏🏽
Funny hydroxychloroquine was safe for 65 years prior to Covid
It’s still used for arthritis and lupus with no problems. It’s given if you are traveling to certain areas of the world to avoid malaria but yet i could not get it to have on hand from any of my doctors in case i got covid. It should be over the counter by now. Well i got covid and after two weeks at home i had to go to the hospital. I have medicare and it cost me nothing but the bill was $30,000. Nothing makes sense anymore. This country is going to hell.
Hydroxychloroquine has some serious side effects, esp. for people with blood and lymph disorders (i.e. CLL patients)
webmd.com/lung/hydroxychlor...
The benefits outweigh the risks for other wise healthy patients for malaria and autoimmune disorders, but not for covid
cochrane.org/news/chloroqui...
Those with existing eye, blood or lymph issues should not take hydroxychloroquine even for autoimmune issues.
Going back to the original question, I am still unable to understand why some are so strongly against 'experimental' vaccines that were extensively tested pre (emergency) authorization, yet are so gungho about untested/not recommended high risk treatments.
In any case, hydroxychloroquine is not at all recommended for those with blood or lymph disorders...
Look, if you want to take the vaccine go ahead.
Right, but, if you read all the replies to this conversation you would believe that people are totally unable to think for themselves anymore. I don’t trust the so-called experts. Mostly they’re WRONG. Smoking used to be good for you according to the experts not all that long ago!
Take the jab....catching Covid is a huge risk for cLL patients. Vitamin C is not going to help. They do recommend b12!
Hopefully the vaccine will protect you. Remember CLL can mean low or no response to vaccines. Talk to your consultant.
Seems vitamin D would be appropriate. CLL patients are almost always low in Vitamin D.
While you are right about vitamin D serum levels commonly being low when we have CLL and it being worthwhile correcting this, there's no clear advantage shown in clinical trials when it comes to fighting a COVID-19 infection:
medpagetoday.com/infectious...
medscape.com/viewarticle/94...
Of relevance, adverse events from vaccines nearly always show up soon after vaccination. About 1.2 billion COVID-19 vaccinations have now been given world wide and the reduction in the severity of the illness for the small percentage who have subsequently become ill with a COVID-19 infection has been dramatic. Hospitalisation rates are way, way down in countries with high vaccination rates.
Neil
Get the shot!
I'm still saying no. Experiment on another volunteer.
BoomrangSuj in reply to
I am grateful for all the volunteers for experimental CLL drugs, and more so to the healthy volunteers for the vaccines.
I reap the benefits with the now established treatments and vaccinations, thanks to those volunteers.
With millions already vaccinated, I do wonder though when you will consider the vaccines to no longer be an experiment.
🙏🏽🙏🏽🙏🏽
in reply to BoomrangSuj
Don't see it in my future, I have nothing against those who chooses to get it. As I would hope people who choose to get it, will feel the same about my choice not to, have a blessed day.
My father has cll and was vaccinated with moderna. He had no reaction other than a slight sore arm.
It is your choice whatever you decide. I have had two AZ shots and had a mild headache for a day both times. I would suggest listening to the science not the scaremongers. Best wishes.
I have CLL and I am 86. I got the Pfizer - no negative reaction at all !
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