vaccines : hi everyone!! I’ve recently ( couple... - CLL Support

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vaccines

Dragonfly766 profile image
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hi everyone!!

I’ve recently ( couple of weeks ago) been diagnosed with CLL waiting for bone marrow biopsy now as it’s not understood why I’m so poorly so no treatment yet until those biopsy results incase there’s more going on.

I wanted to ask if anyone else isn’t comfortable or even refuses vaccines?? I don’t have them and don’t want them really but will I be frowned upon for this decision? I just don’t like putting stuff in my body unless absolutely essential . I don’t drink I dont smoke I’m vegan so the thought of anything like vaccines or treatments freak me out! I have a few hang ups in life I have to deal with haha

thank you for reading my first post and look forward to hearing any information, much appreciated.

Belinda xx

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63 Replies
Walkingtall62 profile image
Walkingtall62

Hi Dragonfly. Somebody more knowledgeable than me will come back to you, I am sure. But just to say, I take all my vaccines. Mainly because with CLL we are so susceptible to infections, and also if all goes pear shape, I don’t want to be the one begging medics to save me, when I didn’t take the first steps for myself. I was never keen on vaccinations per se, but now I have been diagnosed I do follow advice. Take care

Dragonfly766 profile image
Dragonfly766 in reply to Walkingtall62

Thank you walkingtall for your reply it’s much appreciated!! I didn’t realise we were so susceptible to things now! I don’t really understand what I have or what affects on the body it has, seems like I need to learn a lot!! I guess it comes in time and speaking to others with the condition, feel like I’ve gone from a normal life to a very abnormal life in a very short time! Hope you are doing well on your journey with it !!

Keepkicking profile image
Keepkicking

Hi Belinda,I've always been vaccine hesitant but with CLL you'll want to have as much vaccine coverage as safely possible. There are great resources on this site regarding vaccines.

One of my regrets is not getting as much coverage as I could, as early as I could. Generally, our response wanes as our condition progresses, so it's an important consideration upon diagnosis.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Keepkicking

Here's the link to our pinned post on recommended vaccinations.

healthunlocked.com/cllsuppo...

Neil

Dragonfly766 profile image
Dragonfly766 in reply to Keepkicking

Hi ☺️ thank you for your reply! why do regret not getting more? What did you have and what did you wish you had? Vaccines scare me though I won’t lie!! I know some that died after covid jab and others that have injuries too, I know many don’t as well but it seems a game of Russian roulette!

Keepkicking profile image
Keepkicking in reply to Dragonfly766

Specifically, I wish I had been vaccinated with Shingrix and Prevnar20 ( it wasn't available at the time) when I was diagnosed. When you are diagnosed, your mind has a thousand thoughts swirling around and it's too easy to put important things off.

I don't advise to get everything in one fell swoop, but I would have made a plan to get the best coverage possible.

Dragonfly766 profile image
Dragonfly766 in reply to Keepkicking

Yeah I totally understand! There’s so much to take in let alone how life changes! There’s a lot to consider and I guess it’ll all start falling into place in time. I wish you well!!

BarneyFife profile image
BarneyFife in reply to Dragonfly766

I was diagnosed 8 years ago and began treating it three years ago. Hopefully nothing else is going on with you. CLL and treatment do effect your immune system. I've just finished Obinutuzumab infusions and have been taking Imbruvica for @3years. I've gotten all of the vaccines and I haven't had to compromise anything physically. I have the same energy as before my diagnosis. I exercise at least two hours a day. As far as vaccines go, I trust the science. Over 3 billion COVID shots have been given without negative effects. Try not to let this diagnosis spiral your thinking. There are many great treatment options available now that weren't just ten years ago.My oncologist said that you are more likely to die with CLL than from CLL. Good luck to you and please reach out again and let us know how you are doing. You got this!👍

Edalv profile image
Edalv in reply to Dragonfly766

I don’t know how many people died from the vaccines, but I can assure you there are many millions more that died because of not getting the vaccine. I already had the new version of the Pfizer vaccine, had 6 shots since the original one was available. I was diagnosed with CLL in 2004 and still remain treatment naive. So you don’t have to rush into getting treatment anytime soon. CLL is mostly a slow moving chronic condition for witch there are several good treatment options. My advice is to get a good CLL specialist and learn as much as possible. You will have plenty of time to make decisions… best of luck to you 🙏

AussieNeil profile image
AussieNeilPartnerAdministrator

Hi Belinda and thank you for honesty. I expect there are many more like you, but are unprepared to post.

As Keepkicking noted earlier "Generally, our response (to vaccinations and indeed infections) wanes as our condition progresses." That's why we tend to develop low immunoglobulin/antibody counts as we live longer with CLL and may eventually need IgG infusions to help us fight off infections.

There are several very important facts to keep in mind when it comes to vaccinations:-

1) Every moment of the day, our immune system is protecting us from bacteria, viruses and other bugs in the air, food and water. Particularly when we go somewhere we haven't been before, our bodies will encounter and hopefully fight off new threats.

2) Vaccines trick our bodies into naturally developing antibodies without getting sick, by showing our bodies how to recognise what can harm us if not neutralised

3) Because vaccinations are given to healthy people, upwards of 90+% of the population, testing is far more thorough than for new drugs, which are only given to the small percentage of people who become ill enough to need them

4) Keeping up to date with recommended vaccinations reduces the likelihood of you needing to put foreign stuff into your body to help you fight off potentially fatal illnesses

Work at your own pace through this post if you want to learn more about your immune system

healthunlocked.com/cllsuppo...

Neil

Dragonfly766 profile image
Dragonfly766 in reply to AussieNeil

Aww thank Neil for that reply!! I’m so new to the diagnosis I’m not even sure what CLL is at the moment properly! So I’ve been joining “chats” on here and the McMillan site and people discuss it like they are medically trained!! I’m not even sure what to think at the moment! I’ve never been anti vaccine, had them during my life until the flu jab I didn’t think necessary and the Covid one I felt was just too new to know the consequences of! Then people were dying from covid and the jabs ! And many getting injured from the jabs too , people I know so it wasn’t just reading false information on line. Everything seems like a minefield at the moment and I struggle to stay awake all day and my biggest decisions are make sure dogs fed and I’m fed 😂

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Dragonfly766

Dragonfly, with respect to your mention of "people were dying from covid and the jabs ! And many getting injured from the jabs too, people I know so it wasn’t just reading false information on line.", please be aware that it is important to differentiate between something that might have occurred anyway and something which is causally linked. There are plenty of examples of what appear to be correlations for which there is no linkage. While every medical intervention comes with a risk, we also need to consider the risk of not intervening. I'm not aware of any vaccination side effect which is higher than the risk associated with a COVID-19 infection. Given it is becoming very difficult to avoid COVID if you wish to remain socially active, being vaccinated is arguably the lesser risk. Per ourworldindata.org/covid-va... , "70.6% of the world population has received at least one dose of a COVID-19 vaccine.

13.53 billion doses have been administered globally, and 19,730 are now administered each day."

According to The Impact of the Global COVID-19 Vaccination Campaign on All-Cause Mortality nber.org/papers/w31812

The global COVID-19 vaccination campaign is the largest public health campaign in history, with over 2 billion people fully vaccinated within the first 8 months. Nevertheless, the impact of this campaign on all-cause mortality is not well understood. Leveraging the staggered rollout of vaccines, we find that the vaccination campaign across 141 countries averted 2.4 million excess deaths, valued at $6.5 trillion. We also find that an equitable counterfactual distribution of vaccines, with vaccination in each country proportional to its population, would have saved roughly 670,000 more lives.

Neil

leftysfsl1945 profile image
leftysfsl1945 in reply to AussieNeil

Have you ever reviewed papers on the CDC's Vaccine Adverse Event Reporting System (VAERS)?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to leftysfsl1945

Are you aware of what VAERS can and can't do?

From the introduction of the VAERS system:-

"VAERS is not designed to determine if a vaccine caused a health problem, but is especially useful for detecting unusual or unexpected patterns of adverse event reporting that might indicate a possible safety problem with a vaccine. This way, VAERS can provide CDC and FDA with valuable information that additional work and evaluation is necessary to further assess a possible safety concern."

vaers.hhs.gov/about.html

More

publichealth.jhu.edu/2022/w...

factcheck.org/2023/06/scich...

If VAERS cannot infer causality, why do we use it? Alastair McAlpine MD

twitter.com/AlastairMcA30/s...

Neil

leftysfsl1945 profile image
leftysfsl1945 in reply to AussieNeil

Adverse Event = Health Problem

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to leftysfsl1945

Please read the excerpt I quoted from VAERS; it can't of itself differentiate problems caused by vaccines (and there are some) and what may have happened due to other causes.

I gather from your replies that you favour a naturopathic approach to health? How many lives would that approach have saved during the pandemic? Ironically vaccines use the natural process by which our bodies provide adaptive immunity to protect us from the actual disease.

Neil

neurodervish profile image
neurodervish

I had the same thought  Spark_Plug . In the US, the definitive test for CLL is the flow cytometry test, which is obtained from a regular blood sample. I sure wouldn't want to get a bone marrow biopsy unless it was absolutely necessary! Here in the US, they're usually only required for clinical trials. healthline.com/health/leuke...

I think the UK uses a different set of tests tho I'm not clear on all the details.  Dragonfly766 , have you seen these links? bloodcancer.org.uk/understa... bloodcancer.org.uk/understa...

Dragonfly766 profile image
Dragonfly766 in reply to neurodervish

I did have that cytometry test and was diagnosed with CLL , my doctor requested a bone marrow due other symptoms I’m having which he said didn’t add up to just CLL so I’m not really sure what’s going on , it’s all very new to me and there’s so much information. But thank you for reply and il look up those links! Much appreciated!

Dragonfly766 profile image
Dragonfly766

Hi thank you for your reply, I’ve been diagnosed with CLL due to many blood tests and lymph gland biopsy but as I’m feeling quite poorly in a short time my doctor wanted me to have the bone marrow biopsy as he thinks there could be something else going on too due to my symptoms and didn’t want to start treating the CLL until he gets those results as meds can change a result and cover up something he said. I questioned the vaccine thing as I know itl come up soon possibly.

Fowey2009 profile image
Fowey2009

Hello Belinda

I am sorry to hear that you have recently been diagnosed with CLL but welcome to this group. This is one of the best forums I am involved with - the admins and other contributors are very knowledgable and evidence based.

Regarding vaccinations - regardless of your own views, I hope the people around you choose to have vaccinations. As others have mentioned above, people with CLL are very vulnerable to infection and it helps if you aren’t picking up infections from everyone else near you.

Best wishes on your journey.

Beryl

(Off for my flu jab today to protect my husband who has CLL)

Minnxy profile image
Minnxy

Hey Belinda, not offering advice, just support!

I was diagnosed two years ago and am fortunately on watch and wait. Like you, I'm vegan and always try to live as naturally and sustainablly as possible. I'm not looking forward to the day when treatment decisions may need to be made.

Take care, best wishes and good luck!

Adele 😎

Pansypower profile image
Pansypower in reply to Minnxy

Hi Adele and Belinda,

I, too, am new to this. After several months of trying to decide if my issues were actually thyroid ones, now that those counts are completely normal, my Oncologist talks about “my CLL” when looking at bloodwork. Yet when I asked him if he was actually diagnosing this now as CLL, he said he couldn’t yet because some number (perhaps leukocytes) needed to be a 5 and mine was 4.3. He said we’d have to check in 6 months and Watch and Wait. Can someone explain this please? I’m exhausted and have low grade fevers at night yet some mornings wake up drenched. From things I’ve read, this is all part of it. What should I be doing? My white counts are up though not significantly, red counts are low, and he just told me my iron level is extremely low so I’m trying to take Slow Fe. If that doesn’t work, I’ll need an infusion. So confused. Help please.

Thanks!

Pansy Power/Nancy

Minnxy profile image
Minnxy in reply to Pansypower

Hello Nancy,

I'm probably not the best person on this site to answer your questions comprehensively, although I am in a similar position.

I was originally diagnosed with High Count MBL (lymphocytosis) but my haematologist always refers to it as CLL. I'm not entirely sure what parameters need to be met for a definitive diagnosis!

I have few symptoms other than nausea-inducing fatigue and hot flushes. I have been advised to seek advice if I experience; drenching night sweats, a 10% weight loss within six months or notice any palpable lymph nodes popping up. I'm fortunate to be on wait and watch, with annual review / blood tests. My white cell results, although not significantly high are rising but unlike you my haemoglobin, iron levels and platelets are stable.

There is a good deal of advice on this site regarding, healthy eating , sleeping well and exercising. I totally agree that these play an important role in dealing with CLL both physically and mentally.

I hope you start to feel a little better soon, always reach out if in need of support...

Best wishes, Adele😊

PS :- Is that a hamster in your profile pic?

stevesmith1964 profile image
stevesmith1964

HiHaving had a forty year career in pathology/blood cancers, vaccines are the beat way forward. I was diagnosed stage 4 in 2020, remission in 2021... have had every vaccine i can ... shingles , covid 8 times, flu, pneumonia and meningitis. Plus antibody tests for others. I don't smoke, but drink move than the average bear. I am coming 60 and enjoying life to the max a full.time dad to my 6 and 4 Yr olds.

tinglyfingers profile image
tinglyfingers

Hi Belinda,

I could have written this post re vaccines and putting foreign stuff in my body! I am processed sugar free, wheat free, vegan and try and eat as little processed food as possible. I was diagnosed in June and on watch and wait, it’s such a dilemma re vaccinations as I have chronic fatigue syndrome too so advised against covid jab by GP. I decided to have pneumonia one and was okay but the shingrix put me in hospital overnight and has caused a major relapse in my chronic fatigue syndrome. I am now bedbound again after making some improvements. Not sure what to do re flu jab now but def not having covid jab. I’m too ill to go out anyway. The anxiety of any medication is very real, I am with you. I am so sorry you have been diagnosed and hope you get some answers as to why you are so poorly soon xx

Dragonfly766 profile image
Dragonfly766 in reply to tinglyfingers

Hi tinglyfingers

Lovely to hear from you but so sorry you are having such a rough time!! Can’t imagine being bed bound! Is it because of the CFS or CLL? Or both? I don’t go out much either but do if someone takes me as I’m too nervous to go out alone now incase I feel too poorly whilst out. It was only at the beginning of September I had a demanding full time job and looking after my home and 2 dogs! And now I can barely do anything without keep stopping and resting.

I definitely won’t have the covid jab! And highly unlikely to have the others I think but that’s how I feel now, I might feel differently further down the line . I know il have to accept drugs but I have a big phobia about putting poison in my body like yourself. Do you a good support system around you? How long have you had CLL? Is it hard to know what your symptoms are if you have CFS too?

Belinda xx

tinglyfingers profile image
tinglyfingers in reply to Dragonfly766

It’s challenging isn’t it, I’m guessing it’s more the CFS causing debilitating symptoms but sure the CLL doesn’t help. You are the only person I’ve met that feels the same as me, I don’t even like taking paracetamol 😂 I’ve had CLL since June, couldn’t make my last check up as I was too poorly. Support system not great, people just don’t understand CFS. My sister is amazing but unfortunately she is suffering from ill health now too and I rarely see her anymore except through video chat. It gets lonely and scary sometimes.

I completely understand not going out due to feeling poorly. My issue is not only the exhaustion but I have orthostatic intolerance where my HR shoots up to 150 and I feel very weak faint and sick, it’s embarrassing having to sit on the floor sometimes, standing in queues is the worst. I had improved this symptom with severe bed rest over two years and one injection and I’m right back where I started 🙄

You take care xxx

Phiphiminux profile image
Phiphiminux in reply to Dragonfly766

Hi I did not have Covid vaccine. Some great specialists do not agree with this vaccine. In France professor Montagne Nobel Price , (he was well known for his work on AIDS)

I m Still alive !

Refused cll treatment 6/7 years ago, had some improvements since !

But had shingles last year and now have pain.

Low platelets 13000/mm3

sometimes fatigues.

So watch and wait for me.

Phiphi

(See my profile )

Phiphiminux profile image
Phiphiminux in reply to Phiphiminux

Oups Platelets 130000

Dragonfly766 profile image
Dragonfly766 in reply to Phiphiminux

Hi thank you for your reply!

So do you feel you body will deal with the CLL without medical intervention?

Sorry to hear the shingles had a lasting affect! I did have shingles a few years ago but luckily not lasting affects , it was a nasty illness though!

Yes I did hear that some even the medical field refused the covid vaccine too which says a lot doesn’t it!!

Seems everything is a gamble and knowing what gambles to take!

You have the information on your bio of your lymphocytes and platelets etc I don’t have that information but I guess it’s available from my doctor if I asked. Although wouldn’t know how to interpret it,

Although you are on watch and wait now will you accept treatment in the future although you’ve refused it in the past?

Belinda x

Phiphiminux profile image
Phiphiminux in reply to Dragonfly766

If I m very ill I will accept some medications (blood transfusions, antibiotics of course maybe some others , but maybe not chemo )

But in French we say : «  il ne faut jamais dire jamais « ( never say never)

Phiphi

Dragonfly766 profile image
Dragonfly766 in reply to Phiphiminux

Well I hope it never gets to that stage where you are very poorly! I hope I never need chemotherapy either as that’s another treatment I don’t want ! But I guess I would if it meant saving my life. I think all I can do is wait to see what challenges I’m faced with!

I wish you well!!

Phiphiminux profile image
Phiphiminux in reply to Phiphiminux

Oups Prof Montagnier

Poodle2 profile image
Poodle2 in reply to tinglyfingers

Dragonfly766 We can react to vaccines in a more sensitive way and it's not the vaccine causing it but our CLL. Our immune systems are dysfunctional and therefore can "overreact" to vaccines. I do not know anyone with CLL who would have died as a result of taking a vaccine but I know a lot of CLL patients who died of infections. Infections are a serious risk for us. Just saying...I have had some strange reactions to vaccines but it was covid that nearly got me and then my CLL about 4x - I'm not even joking. If you end up being sick with pneumonia or sepsis (actually very likely to happen to us - I have had both already, like many others), the drugs you will end up taking will be probably much worse than the vaccine that could prevent getting the initial infection that can cause this...not saying what is right or wrong but it's something one should seriously consider when you have CLL. The sooner you have your vaccines, the better. Our CLL continues to screw up our immune systems, any CLL treatment will screw it too, you want to get the vaccines before it is too screwed to bring any benefits at all.

MovingForward4423 profile image
MovingForward4423

You’re facing a serious health condition, yet with expert medical care, you stand a good chance of living a fulfilling life. Haematology can be intricate, and it’s vital to trust your doctors over unverified sources or individuals who incorrectly criticize vaccines.

Your immune system will be vulnerable, especially during treatment, and the complexities of this will become clearer over time. Vaccines play a crucial role in our defense against diseases. Choosing not to vaccinate could expose you to severe risks, including life-threatening infections. On a personal note, I have had close calls with health complications from what might seem as minor as an ingrown toenail.

It’s time to put any misconceptions aside. Remember, we’re given two ears and one mouth for a reason: to listen more than we speak. Heed the advice of your healthcare professionals. By doing so, you can be assured that they will be committed to maintaining your health to the best of their abilities.

Dragonfly766 profile image
Dragonfly766 in reply to MovingForward4423

Thank you for your reply!! Yes I will listen and take everything into consideration, I’m not even sure what I’m dealing with CLL to be honest! My life has just been turned upside down right now with a million blood tests biopsies Ct scan mri scan etc etc so I feel overwhelmed with it all and I struggle with all the interactions of tests for various reasons . I was just wondering how everyone else’s take on vaccines and treatments etc a minefield for sure!

Take care !!

MovingForward4423 profile image
MovingForward4423 in reply to Dragonfly766

I get how frightening this all is. It’s like you’ve been thrown into deep waters, trying to make sense of the turmoil of emotions and questions swirling around. Hold on to a positive spirit and wait for your consultant to chart the course. On a very personal note, I was in a similar boat in 2019. I was on a business trip and suddenly became terribly sick – it was a close call. My illness was actually a sign of CLL, but we only figured that out after battling an intense infection.

I went through the whole gamut: blood tests, scans, transfusions, and finally, treatment began to turn things around. I spent a year in a watchful waiting phase, then moved on to a treatment that really hit the mark, despite some hard side effects. Now, I’ve been in remission for 19 months and I’m feeling great.

The point is, while the road ahead might look stark, don’t lose heart. CLL can be tackled, and many folks live their lives to the fullest with it. Hold tight for your treatment plan; it’s your lifeline. You’re not alone in this.

TOMMOHOODIE profile image
TOMMOHOODIE

Hi Belinda, I had two vaccines over two years ago, and I got a blood clot on each lung five days after the second vaccine. I was recovering from a snapped Achilles tendon at the time, so that may have been the cause. Although the doctor said he didn't think it was, and he couldn't say for sure what it was? I have caught COVID twice and recovered well without any vaccine. I'm still in watch and wait, so I'm not on any treatment for CLL, and I'm quite fit, I train four days a week, so maybe that helps? I personally don't trust the vaccine after my experience, but you have to make up your own mind and think about how you'll cope. Hope I haven't put you off, I just thought I'd share this with you. Best of luck. Kenny.

Dragonfly766 profile image
Dragonfly766 in reply to TOMMOHOODIE

Hi Kenny thank you for your reply!! Sorry to hear you had a clot after the vax thank goodness it wasn’t fatal! My friend was only 51 and he was found dead at home and shortly after his 2nd vaccine I believe , it started on his lung and then went to his brain which killed him. I wasn’t happy about a covid vaccine before that so that made up my mind! I know others with injuries from the vaccine too. I’ve had Covid twice , first time I was pretty rough like you would be with the flu . I’ve already had shingles so il risk not having that one lol never bothered with flu jabs either!!

How long have you been on watch and wait if you don’t mind me asking? Glad you are still fit and “healthy”!! I’ve been pretty rough as it seems to have come on suddenly but I may have had it ages anyway! I’m trying to push myself through my feelings of tiredness and feeling unwell as I’m worried about getting too unfit to cope with treatment, I’ve not started yet as the doctor wants to wait for results from an MRI and a bone marrow biopsy, hopefully il know more in a few weeks!

Belinda x

TOMMOHOODIE profile image
TOMMOHOODIE in reply to Dragonfly766

Hi Belinda, I've been on watch and wait since 2015 and my blood count is good - hasn't really changed much at all! So hopefully I'll stay like this for some time! I also got shingles and that was pretty bad, it left me with nerve damage in my left thigh but I train it each week and it's getting better slowly but surely. Hope all goes well with your test results, best Kenny.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Dragonfly766

Hi Belinda,

I've been monitoring COVID study reports since the beginning of the pandemic. There are many outspoken people arguing that specific interventions (such as masking or vaccinations) don't work. There's lots of discussion about whether vaccinations, in particular the mRNA vaccinations, are dangerous, but as I said earlier, "I'm not aware of any vaccination side effect which is higher than the risk associated with a COVID-19 infection." If anyone is aware of any claim otherwise, I'd be interested to hear about it. When you look into the background of those arguing against the benefits of protecting ourselves with other than officially recommended practices, you'll generally find that they are selling supplements, profiting from advertising associated with the channel they are using (YouTube, Substack, etc), have interest in their own vaccine technology and so on.

With respect to your concern about the risk of clotting, this article from April 2021 is relevant.

www1.racgp.org.au/newsgp/cl...

More recently, per the attached, MD Tyler Black has provided an analysis of US heart ischemia (attack) deaths in 40 to 59 year olds from January 2014 to May 2023. The blue dots show the deaths up to the pandemic and the red dots thereafter. The dotted and solid black lines are the modeled average deaths and confidence levels. You can see that the red dots (deaths during the pandemic) are above what's expected. Importantly, they are high from before vaccines were used (during the year 2020) and very importantly, they follow the COVID-19 waves (purple) not the vaccination numbers (green), which by the way are not on the same scale.

Of note, excess heart attack deaths have reduced since vaccinations were made available and are now close to the average expected death rate. See: twitter.com/tylerblack32/st...

Neil

Higher US heart attack deaths follow COVID waves not vaccination/booster waves
CaptRon1976 profile image
CaptRon1976

Not having polio is a good thing, right?

Dragonfly766 profile image
Dragonfly766 in reply to CaptRon1976

No of course not. I guess it’s weighing up the risks of what some vaccines are for and deciding on that basis. All medicines come with a risk and it’s choosing what risks are worth taking.

I wish you well!

OWLS26 profile image
OWLS26

My view is that I am not an expert, my consultant is. I follow his advice and that includes taking vaccines. In particular I wish I'd had the option of the shingles vaccine 2 years ago as I have been in chronic pain since then and it looks like I will be for the rest of my life.

hankisbest profile image
hankisbest

Hello Dragonfly766,I'd say get those vaccines one at a time and space them out two weeks or more. You will appreciate the "help" as you go forward, to stay healthy. No live vaccines! Good luck!

ksteinberglewis profile image
ksteinberglewis

Hi Belinda, Welcome to the group. I totally understand where you are coming from and vaccines and treatment are your friend. We are not doctors but just share our journey with CLL and knowledge. It is important to trust your doctor and get the best specialist you can, not just a doctor that treats all cancer Your immune system isn’t doing its job to protect you from every passing bug so you need to give it help. My recommendation is to get the pneumonia and shingles vaccine before you start treatment. I always get the flu and now the Covid shots. I ask my oncologist before I take anything. You can get a second opinion. The leukemia and Lymphoma Society are a valuable resource. They will send you lots of information about CLL. One test your doctor should have done is a blood test called FISH which determines which mutation you have that caused the CLL. I never had a bone marrow biopsy and I was diagnosed 14 years ago. I am in the USA and I know doctors in other countries do things differently. Stay strong. You got this and we are here for you. Karen

Dragonfly766 profile image
Dragonfly766 in reply to ksteinberglewis

Hi Karen thank you for your message!! I’m not sure if I’ve had the FISH test I will ask!! I’ve had so many blood tests so it is possible but il check it out! Thank you! 14 years with CLL is comforting to know and I hope you are doing really well!! I’m hoping to not have chemo , I’d rather no drugs but my quality of life right now is rubbish! I’m pleased with myself if I manage some housework these days! Lol

Belinda x

Ghounds profile image
Ghounds in reply to Dragonfly766

If you're in the UK it's unlikely you will be able to have a FISH test until just prior to any treatment.

ksteinberglewis profile image
ksteinberglewis in reply to Dragonfly766

Make sure you keep a copy of all your tests and labs. Hope you are feeling better

ksteinberglewis profile image
ksteinberglewis

Ditto

MN1999 profile image
MN1999

Hi Belinda, Sorry you're struggling with health issues, but it's good you found the group. This is a great resource although I tend to be an outlier. I am over 24 years on this journey and have had numerous meds and hospitalizations and am currently in treatment. I am not anti-vax, but haven't had any for many years. Definitely no covid vax as I believe it was brought to market too fast and the pros and cons have not been presented to my satisfaction. Each medical intervention is an individual decision and I would never say never. Much of our immune system resides in our gut, so that's an important factor too.

DanBro1 profile image
DanBro1

Based on my own experience, I HIGHLY recommend that you get every available inoculation available to you, especially after you complete your treatment regimen when your immune system is at its lowest point. I had 4 Covid shots plus 2 Evusheld shots because my immune system was weakened and folks who contracted Covid were dying by the thousands, which really worried me should I come down with Covid. Well, I contracted Covid about a month ago and my body reacted like it was a minor cold. I also had a flu shot, shingles shot, pneumonia shot, and RSV shot. I believe in modern medicine, for sure.

Pinecrest profile image
Pinecrest

Welcome Dragonfly,

CLL weakens the immune system so I get every vaccine recommended. I also got Evusheld and now VYD222 they are prophylactic monoclonal antibodies that fight COVID-19.

I have been battling CLL for 15 years now. In the last 10 years, there have been many safe and effective treatments developed for CLL.

Good Luck

andysnat profile image
andysnat

Scientific evidence for the effectiveness of large-scale vaccination campaigns is well established.

Two to three million deaths are prevented each year worldwide by vaccination, and an additional 1.5 million deaths could be prevented each year if all recommended vaccines were used.

Vaccination campaigns helped eradicate smallpox, which once killed as many as one in seven children in Europe, and have nearly eradicated polio.

As a more modest example, infections caused by Haemophilus influenzae (Hib), a major cause of bacterial meningitis and other serious diseases in children, have decreased by over 99% in the US since the introduction of a vaccine in 1988. It is estimated that full vaccination, from birth to adolescence, of all US children born in a given year would save 33,000 lives and prevent 14 million infections.

I posted the above in response to my original post to this thread being deleted, despite having received likes from community members. I can provide impeccable references to all the facts above, as this is a paragraph from the wiki page called "Vaccine hesitancy" which can be found at -

en.wikipedia.org/wiki/Vacci... -

(note that wikipedia encourages reproduction of article text, as long as acknowledgement of the source is made)

Below is a copy of the message from Neil the admin with my post redacted.

[ADMIN EDIT;

andysnat pm’s between Admin and members are by their description and nature, private and not to be reproduced on the open site. It has therefore been removed as it’s totally inappropriate to post these private discussions especially where other members are named.]

Attn the reporting community members - This is the internetz, you really need to be a little less sensitive.

Happy Sunday everybody

aptucxet profile image
aptucxet

For what it's worth, I do not get any of the many vaccines offered. I am 89 yrs old, have CLL with poor markers.......diagnosed 11 years ago........and have had no treatment. Just my personal choice.

Deilginis profile image
Deilginis

I’m currently on O&V and my doc seems to thinks benefits of vax will likely be much reduced because treatment drives down the immune response (hope I’m explaining this correctly). In other words, you’ll get optimal benefit from vaxxes pre- treatment. All, please feel free to correct any errors.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Deilginis

Your doctor is correct with regard to the B cell response to vaccinations (antibody/immunoglobulin production), but has neglected the T cell response, which is harder to study. Importantly when it comes to studies on COVID-19 and CLL patients, probably the biggest part of any silver lining from the pandemic, is how much more we have learnt about how our immune system responds to new COVID variants and how infections and boosters improve our immunity. In general with CLL, we don't tend to respond as well as healthy folk with regard to antibody production, but unless we are in treatment, we can respond reasonably well after several boosters, Encouragingly, our T cell mediated (cellular) immunity is much less impaired, even during treatment. Venetoclax can slightly reduce your T cell count, but I would still consider that boosters are worth it for the protection gained.

As you note, "you’ll get optimal benefit from vaxxes pre- treatment", which is why, given starting treatment is generally not urgent, getting up to date with vaccinations against illnesses which are the most threatening to your health during treatment makes excellent sense.

Don't expect to see much in the way of immunoglobulin production from new vaccinations for at least a year after your last obinutuzumab infusion. :(

Neil

leftysfsl1945 profile image
leftysfsl1945

A few years ago Dr. Bell of the University of California - San Francisco (UCSF) was asked about Relative Effiacy, Absolute Effiacy and Number Needed to Treat of the Pfiter Covid vaccine. He could not immediately give answers and consulted with experts.

After a few days he provided the following:

Relative Effiacy -97%

.

Absolute Effiacy - 0.84%

Numbet Needed to Treat - 119

According to UCSF 118 people DO NOT benefit from the Pfizer vaccine before ONE person gets a positive benefit.

On this topic please refer to articles written by Dr. Peter Doshie in the British Medical Journal (BMJ).

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to leftysfsl1945

What really matters is whether there is a mortality rate difference between vaccinated and unvaccinated folk. In the years since those concerns about vaccine effectiveness were raised, we have accrued the attached data, showing a clear survival benefit for vaccinated folk. Plots were provided by Dr Tyler Black for the UK, but you'll find similar impressive survival differences around the world between vaccinated and unvaccinated people.

With respect to the UCSF, Bryn Boslett, MD, an infectious disease expert who is leading the vaccination effort at UC San Francisco. She explains why mRNA vaccines won’t affect your DNA, which allergies pose a risk, what 95 percent efficacy really means, and more.

COVID-19 Vaccine Fact Vs. Fiction: An Expert Weighs in on Common Fears

ucsf.edu/news/2021/01/41969...

Neil

Mortality rate of unvaccinated people is significantly higher than those vaccinated
leftysfsl1945 profile image
leftysfsl1945 in reply to AussieNeil

Have you read Dr. Doshie's British Medical Journal articles on the Covid vaccines?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to leftysfsl1945

I followed the discussion on his concerns about two years ago when he raised them, but in the end, it's real world results that matter.

leftysfsl1945 profile image
leftysfsl1945 in reply to AussieNeil

Have you followed Dr. Robert Malone of the U.S. or the U.K.'s Dr. Tess Lawrie?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to leftysfsl1945

I've certainly heard their fringe perspectives! Dr Malone healthunlocked.com/cllsuppo... was rather miffed at missing out on a Nobel prize for his contribution to mRNA research. Dr Larie got taken in by the FLCCC fringe doctors who can't let go of ivermectin as a COVID-19 prophylactic/treatment, which came out of Australian research that was unfortunately hyped up beyond reasonable expectations.healthunlocked.com/cllsuppo...

Have you heard how vaccination and antivirals have reduced the risk of death from COVID-19 infections in people with CLL or MBL?

cllsociety.org/2023/10/lowe...

Background:

Mortality in CLL patients was very high during early pandemic waves at 30% – 40% and remained high at 10 – 15% during later waves. The study was interested in whether repeated vaccination attempts to achieve higher titers of protective spike antibodies (Ab) and the new anti-viral therapy would lower COVID-19 morbidity and mortality.

:

Conclusions:

The overall hospitalization rate of 5.2% and mortality rate of 1.3% in the COVID-19-infected CLL and MBL cohort, while still too high, is very encouraging compared to early pandemic results, especially knowing that only 20 of the 67 infected patients received what would now be considered optimal anti-viral therapy and only 6 received effective preventive antibodies.

Neil

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