Influenza A while on W & W,-- the price for not wanting a vaccine

[Sillysand]

I decided to put my pride and lack of articulate writing skills aside to share a my learning experience .

It was in Jan of 23 when I was told over the phone of my CLL Dx. I walked around in a panicky daze. First I went to Mr Google. (BIG MISTAKE !) I started clearing out the house and giving things away. Seriously , who needs 4 sets of measuring spoons ? And I don't like to cook.

It was about a month later when I found HUnL. The first post I read was Jeff's CLL for dummies. His post was my first ray of Hope. Thank you Jeff. From there on I started reading up on CLL. So many folks with so many different stories , ALL SO VERY HELPFUL - THANK YOU !

I have since been seen by 1 GP and 2 different oncologist. They ALL advised me to get a Flu shot, a Prevnar 20 shot and a Shingrix shot. I was getting more needed info, but the panic I felt in my gut would not subside, plus I struggled with the words of " You and Your immune system is now compromised." BUT, BUT my numbers are low and I feel ok,,, How compromised can I be ?????

My 2nd or 3rd set of numbers included small changes in my RBC, Hgb, and Hct. Even though the numbers were low and I worked as a Lic Nurse, that did not stop some serious anxiety from setting in. The oncologist rushed me in and out , telling me my numbers are good , You have CLL , your fortune ! SERIOUSLY ? You tell me I have Cancer and I'm fortune. Moving ON.

I spent the summer blocking the thought of CLL out of my mind , and started spending a mini fortune on supplements + acupuncture . Went hiking , felt great, had a blast. In 9/23 my WBC's were 16.6 ALC was 10026 . I wanted to learn as much as I could , so I started reading a lot of post on HunL. I was filled with so much hope when reading from the folks on W&W for Years and YEARS ! ALSO It was also helpful to read how and why needed to started Tx. Again everybody's story is so Helpful !

There are 2 quotes I remind myself,,

1- Newdawn, "Never let the fear of dying destroy the Joy of Living ! & 2- JigFettler , " Psychological well being in time will be major challenge!

Both so very true, Please keep in mind 10+ years of hot flashes have fried a few of brain cells 😖 Moving ON,,,

Approximately 8 days before Christmas, I lost my voice, no big deal its happened before. Then 3 days before Christmas I felt like I was hit by a train! Chills, fever , Lots of difficulty breathing and body aches I had NEVER experienced . The first oncologist suggested I drive an hour away and have myself admitted. Dizzy and feverish ! Gee thanks Doc. The GP was not available. I took Tylenol but the fever would NOT stay down . It was when I had my 2nd visit with the second oncologist (summer 2023 )that he recommended I have a prescription for antibiotics (just in case) ,,available in case I would need it. My comment to him was , but but , a fever helps fight an infection ,, he just shook his head and said NOT with YOU !, NOT with CLL. I took the prescription with me. The fever started to drop an hour after I took it. I spent the next few days using a nebulizer (almost every hour ) monitoring my 02Sat and fever . I HAD NEVER BEEN THAT SICK IN MY LIFE ! The day after Christmas the Xray was Neg for pneumonia ,, Neg for Covid,, Neg for Sars ,,,,, AND Positive for Influenza A . The GP's first question was ,,, did I get a flu vaccine ? NO☹️. The good news ,, (well first , Thank you Jesus ,, and Yes I will be getting a flu shot ). I decided to pay for test in Jan. My WBC's were13.2 ,, ACL was 7960. The numbers actually dropped. I did not get my immunoglobulins drawn. I was so sure I had pneumonia and thought with all this infection and inflammation that my CLL was worse, but the numbers were down, didn't expect that. That 2nd oncologist was spot on.

I understand that vaccines and supplements are up for debate with some folks. I can respect anyones decision on vaccines , as some people put it, My Body , My Choice,,,, But I am convinced that I MADE THE WRONG CHOICE , NOT TO GET A FLU SHOT ,, And what kept my butt out of the hospital was that I DID have the Prevnar 20 vaccine and having the antibiotics.

Neil

From the get go you have been there for me , for ALL of us CLL folks. I am forever grateful for your extremely informative posts, for your compassion , your kindness, your sharing ,, your patience . "In short, there has been a revolution in CLL management in the last decade such that PROVOIDED YOU TAKE APPROPRIATE PRECAUTIONS TO REDUCE YOUR RICK OF INFECTION, you stand a very good chance of living out your normal life expectancy.

I give God the glory for getting me through that awful infection.

Thank you Neil , Thank you HealthUnlocked.

My eyes are open.

God Bless

Happy Easter🐰

seeker

[LeoPa]

That was articulate enough from where I look. Glad you got better!

[AnneHill]

I always believed that many terrible diseases were eradicated when we had penicillin and vaccinations. Have people always been suspicious or is the internet making us question everything? I was diagnosed with cll in Feb 2001. I was told nothing I did would make a difference. Changing my diet wouldnt help.

I have been having vaccinations for everything going and been fortunate not to catch flu or covid. If we go for a coffee I sit away from others. I dont want to breath in their breath.

Thankfully you recovered. Flu is awful.

I have been confident that Ibrutinib and ivig were working but my platelets are getting lower. I have other issues and I am getting nervous.

We do need to enjoy life and I am going to make more effort to go out.

Take care, Anne uk

[AussieNeil Administrator]

Seeker, thank you for sharing your experiences after diagnosis. I'm glad you are still with us after that fight with the flu. It's truly worrying that there is so much mis/disinformation about vaccine safety, though when you dig deeper, you can usually find how the promoters are personally benefiting from promoting their claims. We do need to keep in mind that as you found, CLL specialists do recommend vaccinations, because they can mitigate our increased risk of fatal infections with CLL. Certainly they can cause temporary discomfort and they are not without risk, but as you note, suffering from the disease can be much, much worse.

Flu is a killer of even otherwise healthy people. A few years back, the community where I was living was rocked by the unexpected death of a young radiologist from the flu. Not long afterwards, my sister nearly ended up in hospital after developing pneumonia from the flu. She'd had her annual booster about 9 months earlier, but was hit by a variant that had developed meanwhile.

To quote from a recent post by my Aussie co-admin CLLerinOz ; It's time to start talking about ways to enhance survivorship for those with chronic lymphocytic leukemia healthunlocked.com/cllsuppo...

"While progressive CLL or treatment-related complications were previously the predominant cause of death, most patients diagnosed in the current era will die from non–CLL-related causes, including second cancers, vascular disease, and infection", conditions which can be preventable with routine screening to identify them and any associated risk factors.

CLLerinOz is also maintaining our pinned post on recommended vaccinations for those with CLL healthunlocked.com/cllsuppo...

Neil

[CoachVera55]

I am glad you fought & won too. And now have a personal reason for the Flu Vaccine. I got the Flu when I first started out as an RN from my Nursing Home job. I was in my 20’s but that thing dragged me for a week or more. I would get a Flu Shot routinely after that lol, usually before September & even again in Jan/Feb after that horrific ordeal. It seemed that the Flu Season followed the School Sessions, whenever the kids came together after being apart like from Summer Break or Christmas/New Year Break, Flu Numbers would be the highest. I don’t do research but merely my observation…

I also got very very sick after my first MSK visit. They offered mask & gloves for anyone who deemed it necessary. I was still in W&W at the time & my labs were great. I passed up the mask & gloves & returned home with the worst cold ever & a high fever of 103F. I didn’t like traveling to NYC so I stopped seeing him. Covid Pneumonia is the next time I remember being so sick with 103.8 Fever & Constant Mucus Production, I was on Fire & Drowning Simultaneously. I was sure I was gonna die.

I am retired now & an empty nester. I stay masked & require masking of doctors or any home visitors. Everyone is compliant thank GOD. I stopped my Flu Shots before Covid & I have not gotten the Flu in a decade.

My issue on treatment now is this weight I put on & this was one of my greatest fears. I got pneumonia 2 weeks into treatment & 4 doctors - 2 Pulmonologist & 2 Oncologists refused to prescribe antibiotics. That Pneumonia plagued me for 3 months with 3 Emergency Room Visits & 4 CT Scans. Once I got the full dose of Antibiotics, I began to heal. I listened to my body & we discovered that a reduced dosage of Zanubritinib worked best for me. Which shows that we are all different.

What I learned about myself was that I had the answer all the time & I let ‘Experts’ talk me out of what I knew & to my own demise.

What I can not wrap my head around now is that many doctors talked about the evils of antibiotics but somehow think that Steroids, Allupurinol, Acyclovir, Protonix, Lasix, Tramadol, Muscle Relaxant, Symbicort & Nebulizers is so much better to take in combination. The antibiotics prescribed promptly, properly & even prophylactically would of prevented the over use of Steroids & consequently my extreme weight gain.

The overuse of Steroids has contributed to these 30-40lbs I’ve gained in 1 year & has worsen all my other Chronic Issues. I especially loved when the CLL Specialist said I could try a ‘Medication Holiday’ to see if my Arthritic Pain improves. I vehemently rejected that recommendation since I am on 1/2 dose with great labs. I categorically said, why so I could have 2 problems instead of 1 🤨. If you add 30-40lbs on anyone, wouldn’t it cause them pain???

I really don’t know if its propaganda or just the increase of knowledge that many are taking issue with vaccines. Science is an ever changing field as information comes in, we upgrade our protocols. I know there is some concern about mercury in some vaccines & we are learning about heavy metal issues. I really don’t know who is right or wrong but its up to the individual. I just know that it must all be based on risk versus benefits.

One big question for everyone though, how do Anti Vaccine persons make money if people stop taking vaccines??? What is their Financial Incentive or Benefit???

All these ER visits & CT Scans could of been prevented in my case & I’m still mad😡