Flu shots!

[Heidiypi1]

I just had a flu shot on Wednesday last week and by Friday I have now got a dreadful flu! Gad I wish I never had the damn shot now!... I don't think they work on me now!

[AussieNeil Partner Administrator]

While it is true that flu shots may not work as well on us as they do on healthy people, having the vaccination can reduce the severity of what can be deadly to healthy people, let alone immune compromised folk with CLL.

Irrespective, it takes a couple of weeks for a vaccination to become effective, so sadly, you were exposed before your shot could have provided you with any protection. It should still help your recovery however, because your immune system had a bit of extra time to begin making antibodies.

I hope you are soon feeling very much better.

Neil

[Heidiypi1 in reply to AussieNeil]

Thank you Neil and everyone for your kindness, and your time, I can't reply to everyone but you are all appreciated very much ! unfortunately my mum has had a heart attack yesterday, so I am running on adrenaline it has pushed everything to the background, just praying for my mum xxx

[MilliePerth in reply to AussieNeil]

Neil, my husband has been advised to have two flu shots, four weeks apart. He has had the first one and has been quite unwell but, as you say, the alternative to having the flu shot may be much worse.

[Chrisfer]

Sorry to hear. I wouldn't go near any shots personally! In my opinion the best chance we have is via a robust immune system. Any vaccination is contra a robust immune system as far as I'm concerned. Just my opinion

Hope you feel better soon 🙂

[Bubnojay in reply to Chrisfer]

Sadly a robust immune system is something we Cllers lack. How I wish it was not so.

Still it is a personal decision on whether to have shots or not.

Hope you soon feel better Heidi.

Best wishes

Bubnjay1

[AussieNeil Partner Administrator in reply to Chrisfer]

I'm glad that you've clarified that it is your opinion that it is best to avoid vaccinations, because the effectiveness of vaccinations in preventing deaths and permanent disabilities has been extremely well proven over more than 100 years. Prior to antibiotics, I'd say without doubt that it was the biggest breakthrough in improving our health. Vaccinations are simply an artificial technique to expose us to pathogens in ways that enable our bodies to become more robust against infections without becoming ill. A couple of weeks after a vaccination, our bodies can produce massive amounts of antibodies/immunoglobulins to neutralise a real infection. Prior to vaccination (or exposure to the pathogen), our immune system is not robust against that pathogen - not being able to recognise it as dangerous to us.

Sadly, when we have CLL, by definition, we no longer have a robust immune system able to fight off infections easily, but a crippled one, which only gets worse over time and with treatment: healthunlocked.com/cllsuppo...

[Hidden in reply to AussieNeil]

I was confused by your last sentence, that our immune system only gets worse over time and with treatment. Does that mean that even with treatment it will continue to get worse? How can we ourselves do something to improve our immune system?

[MelioraDay in reply to Hidden]

My CLL specialist told me if we are treated only with non-chemo agents and achieve MRD negativity, that our immune system can be restored. He said it would be like "taking a tarp off the lawn."

[Hidden in reply to MelioraDay]

What is MRD negativity? Thanks. Comforting to know that our immune system can be restored. Wish I had your doctor. Mine doesn't really tell me anything, just checks me over, tells me my blood results look good and see you in two months.

[MelioraDay in reply to Hidden]

MRD negativity means there is no evidence of any remaining cancer cells using very sensitive testing. For this discussing, that would mean no evidence of residual disease in the blood, bone marrow or lymph nodes.

Take a list of the top few questions you have with you to your next appointment. If he won't answer questions it might be time for another CLL specialist?

[AussieNeil Partner Administrator in reply to Hidden]

All CLL treatments wipe out all our B - lymphocytes, an essential part of our immune system, not just our CLL cells. That cripples our ability to make antibodies. If our levels fall low enough and we have serious infections as a result, our immunity can be boosted by IVIG infusions.

Neil

[MelioraDay in reply to AussieNeil]

This is a field of research with data that has not yet matured. Some patients who have achieved MRD negativity with the newer targeted therapies have stopped treatment and have normal immunoglobulins, T-cells, neutrophils etc. We will have to see how those patients do and how their immune systems respond. It is the belief of some CLL specialists that patients who have not been treated with chemo can have restoration of their immune systems. A lot of work is yet to be done, but there is reason for optimism.

[Cllcanada Top Poster CURE Hero in reply to MelioraDay]

Looking like ibrutinib may have an immunoglobulin raising effect..certainly lenalidomide is well known to do this.

Lenalidomide has never left the starting gate in CLL as a treatment, but it continues to be researched...in combinations.

~chris

[Hidden in reply to AussieNeil]

I wonder why they don't routinely give us IVIG infusions to boost our immune system so we don't get a serious infection.

[Cllcanada Top Poster CURE Hero in reply to Hidden]

IVIG is extraordinarily expensive and in short supply, even though they now pay for blood donations in many countries.

In the past supplies have become so bad that CLL patients were limited and it went primarily to paediatric patients for the following

a)

Primary immunodeficiency states: XLA, CVID, HIGM, WAS and others.

b)

Kawasaki disease.

c)

Idiopathic thrombocytopenic purpura.

d)

Guillain Barre syndrome, Chronic inflammatory demyelinating polyradiculopathy (CIDP).

e)

Reduction of serious bacterial infection in children with HIV.

f)

Neonatology: Haemolytic disease of newborn due to Rh and ABO incompatibility, Neonatal alloimmune thrombocytopenic purpura, Bacterial sepsis in preterms.

~chris

[Hidden in reply to Cllcanada]

Thanks. Still don't know what it is though. An IV of something I suppose.

[sandybeaches in reply to Hidden]

IVIG infusions are very costly, probably to do with supply issues, and not without side effects for some patients. Some countries have guidelines for immunoglobulin levels before treatment can be given, or number of serious infections in a specified time.

Sandy Beaches

[Hidden in reply to sandybeaches]

Thanks. Maybe that's why my Dr. hasn't given me one as yet. But he has mentioned an IV if my immune system blood tests get lower.

[Hidden in reply to sandybeaches]

Just looked it up and found this. This is what my Dr. was telling me about if my numbers go lower on the immunity tests. webmd.com/a-to-z-guides/imm...

[AussieNeil Partner Administrator in reply to Hidden]

I've posted about my IVIG experiences here: healthunlocked.com/cllsuppo...

To qualify, you need both to have had severe enough infections plus IgG below a specific level (which depends on the country, presumably based on how well supply is meeting demand).

Neil

[Hidden in reply to AussieNeil]

Thank you. You're always very helpful. I'm seeing the oncologist today, so I'll ask about it. I had the blood work 3 months ago for igG, etc. and he said they were all low, but he didn't say how low and I don't have those printed results. However I haven't had any severe infections for a year now, since the pneumonia.

[richutchens]

Lesson learned. Flu shots are toxic.

[Justasheet1 in reply to richutchens]

Richutchens,

You forgot to say, "In my opinion ".

Jeff

[Minda1941]

So very sorry about your flu! My oncologist has said no flu shots. Im 75 and have been in stage 0 for 5 yrs and wondered why for many yrs every time I took a flu shot I got the flu. When it was discovered I have CLL I understood why. Talk to your oncoligist about shots. Vitamin C has helped me ward off colds and flu. Wash your hands often during the day and best of luck!

[thegapwoman in reply to Minda1941]

non live vaccines. regular flu shot is standard. (in my opinion)

[Hidden in reply to Minda1941]

Also be very careful in stores when being exposed to germs when you touch anything. I can't wear gloves in the spring and summer but I always do in fall and winter to try to protect myself. As soon as I leave the store I use a hand wash, and before I use a shopping cart I wipe it off with a Clorox wipe. Might seem a bit much, but I'm convinced my husband got c-diff in a store or store bathroom since he hasn't taken antibiotics in years!

[ap64]

My son in law has a phd in microbiology from Cambridge and says you cannot get the flu from a flu shot. He says that in any given year it is the luck of the draw whether it will protect you from that year's strains of flu. I agree with Aussie who said you had the flu exposure before you got the shot. We all get the shots in my family even though they are not perfect. I think they are worth trying. I have friends who got bad flu this winter who did not get the shot.

Sorry you are not well.

[Minda1941 in reply to ap64]

Your family member is right if the flu shot is a dead virus. No CLL patient should get a live virus shot. Im a nurse my husband is a pharmacist. Yes some flu shots prevent the flu depending on the strain.

[Jonquiljo in reply to ap64]

I always thout that yearly flu shots were “dead”, other than the “in the nose spray” often given to kids? I’ve never heard of a live shot - ever. There has to be some rational explanation for this.

[AussieNeil Partner Administrator in reply to Jonquiljo]

You are quite correct. The only live (attenuated) flu vaccine is one given to children as a nasal spray. The trivalent or tetravalent adult vaccines (providing protection against 3 or 4 of the most recent flu strains) don't contain any live virus, so it is impossible to contract the flu from an adult flu vaccination. In the flu season, there are always going to be some people who coincidentally contract the flu from someone else with the flu about the time they have their flu shot...

cdc.gov/flu/protect/vaccine...

[Jonquiljo in reply to AussieNeil]

Yes, flu shots are made as follows, though I don’t know what version is produced where these days. cdc.gov/flu/protect/vaccine...

Either way, in the killed versions, the process involves killing the live influenza used to make the antigens, which are then purified out of the mix.

It is very possible that the OP got a bad batch of vaccine - likely not completely killed and purified. They do make tons of this stuff and there’s always room for sloppy work and errors. I’ve heard of whole batches being dumped for (likely virus) contamination. There’s so much demand at times that companies cut corners. I guess people with CLL need to be careful, though I don’t think these vaccines are rigorously tested.

[Hidden]

Every fall at MD Anderson I am told to get a flu shot. When I return 84 days later I am asked if I got the flu shot.

[shoshanaz]

I hope you feel better soon. Flu is really a bummer. All the more reason to make sure you are vaccinated for the next season, though, not a reason to avoid.

Unless you got a live vaccine, you didn't get the flu from the shot. You were exposed before getting it, and either the vaccine was not effective against the strain, or it just didn't have time to work.

We are often tempted to believe that because one thing follows another, that it was the cause (Post hoc ergo propter hoc logical fallacy) , but in fact it was just coincidental .

[Fightingwithdad]

My father, now end stage cll gets immunoglobulin infusion every 3 weeks, while this reduced the number of chest infections, he has had his second bout of pneumonia in 6 weeks, is in hospital ATM, so even that isn't stopping infections. He also gets blood transfusions every 3weeks too, his bone marrow is full of cancer cells, so it seems that as this disease progresses the immune system gets much weaker. However, he seems to be recovering again! 7 bouts of pneumonia in 3 1/2 years, two with sepsis.

[MichelleM61 in reply to Fightingwithdad]

Bless his heart! How old is your dad? Hope he is feeling better!

[Fightingwithdad in reply to MichelleM61]

He's 92, 93 in June! A remarkable man, was told 6 weeks ago he wouldn't recover, and here we are again, and he's started to improve. He had pneumonia and sepsis in November 2013, I got a phone call from his hematologist to say he wouldn't survive, he did, but I was told he had less than 6 months to live. It's been a horrendous time but he refuses to give in. His lymphocyte count is now nearly 800. (UK)

[PaulaS Volunteer in reply to Fightingwithdad]

So sorry to hear about your Dad's situation, Fightingwithdad It sounds like he's a great fighter - rallying round after so many bouts of pneumonia. But it must be exhausting for him and all your family...

thinking of you,

Paula

[Fightingwithdad in reply to PaulaS]

Yes it is Paula, it's a rollercoaster for the family, regularly believing we'd reached the end, the stress involved in wanting him to have an easy passing, then he recovers!!

[Newdawn Administrator in reply to Fightingwithdad]

Your dad is testimony to the power of the human spirit and having good family worth surviving for!

I hope he recovers well and continues to have a reasonable quality of life.

Best wishes,

Newdawn

[Fightingwithdad in reply to Newdawn]

So true! His will to live is do strong. He has a lot going on nowadays. He has Parkinson's, his blood transfusions and immunoglobulin therapy, he spends two Tuesdays out of three in the chemo ward getting his infusions. He has had surgery for carcinoma on his scalp, the wound was horrendous, they took a graft from his thigh, and one on his ear, they removed part of his outer ear. He needs one removed from his nose which requires a graft, and he has a new one on his scalp, he's constantly telling me he wants them removed. He's proof of the power of mind over matter!!!!