What about a 3rd vaccine shot (booster) for CLL patients?

[RamOren]

Do you know if there are any recommendations for getting it?

Any CLL patient from Israel received a third vaccine?

[Pin57]

Great question. I’m in US, my GP n CLL docs were ok with trying it but warned of side affects n they were unaware of studies completed on it.

I went ahead n did it, weathered the side affects, maybe lucky me? Awaiting test results. I Don’t advocate it due to lack of data on it. It’s a personal risk thing. What is interesting is a sudden what seems to be urgency to develop boosters, aka 3rd shot… why did it take till now to get going on that? I digress. My gut says it’s a good path to blaze as it just might help us?

Many posts or replies here have indicated their docs not as supportive of the 3rd shot idea and it is a rogue untested landscape. A few here have reported with mixed results, a few good (2 I know of >2500 score, their maybe others?) but some unfortunately not so good.

I read somewhere Israel is ahead on this topic? Have you heard of completed studies on boosters/3rd shot?

[HopeME in reply to Pin57]

I read this morning that Israel is moving forward with a third Pfizer shot for immune compromised folks. The reason “it took till now to get going on that” in other places is because it takes time to gather and analyze data. Israel has a unique/excellent national healthcare system that lets them understand and analyze trends and data very quickly. They are way ahead of most, if not all, countries with their vaccination program.

Best

Mark

[bennevisplace in reply to Pin57]

Hi, was there anything other than gut feeling that persuaded you to get a booster shot? At early stage untreated your immune response to two should be OK. Did you test Abs or will you?

[Pin57 in reply to bennevisplace]

Benne - Abs, no prior covid n a few other tests along line said same thing. I’m clean on that.

Yes had a big reason to go for it … when we learned wife had stage 4 cancer in March (n immediate chemo treatment) doc turned to me n said last thing she needs now is to get covid, so do whatever you can to not get it n transmit it… so after a 100 U/ml antibodies test in April n gauging the scoring criteria via discussions with LLS and my own view on it, I felt 100 wasn’t going to cut it to protect me and plus how long would it hold up (go to 0)?… vaccine maybe good for healthy people for say 12 months? n healthy folks have counts in the “thousands” … my math told me I’m say 1/12th (or much worse) what they have n they get maybe 12 months of vaccine protection (I know I’m making all this up but keep following my simplistic view)… so maybe I get a couple months of antibodies in me before the tank dries up n I’m at 0 and then hanging out to dry.

Yeah was and still am doing the safe stuff but I’m big on vaccines as a tool to help bigtime from getting covid. Hence my analysis (or gut view) told me I gotta do the 3-shot, give it a try.

Checked in with docs to be sure it wasn’t a certain sudden death sentence to try it n you know Benne I felt I had to do whatever I could to protect my wife Cus if she got covid thru me, her chemo would stop n that’s not a good scenario. So that’s main reason I did the 3-shot.

[bennevisplace in reply to Pin57]

Thanks for your candid explanation Pin. In your place I would have done the same. I hope all goes well for you and your wife.

[Pin57 in reply to bennevisplace]

I covet 3 words now Benne… “it’s under control”, … just heard that from my wife’s cancer doc the other day on her treatment. It’s not metessizing, n not getting worse n maybe, just maybe, doc said she might be able down the road to stop the chemo treatment n just do the special trial immunio pill code no. IPI 495 now my favorite 3 numbers! (great science rules again!) .

So in short, best news n 3 words we’ve heard all year for us. I’m keeping up the prayers man. It’s all that matters (she getting better) and the whole antibodies 3-shot thing is a just a tiny sidebar effort in the big picture of things for us.

Cancer sucks … n anytime, anywhere, I hear somebody is beating it … I’m like yeah-baby, kick buns!!! Thank god for great science Benne, and the new meds etc… it offers hope and good results. In her case it has! 😃

Thus reply kinda fired me up as you can see. Riding a roller coaster of emotions Benne in 2021, cancer has that way of messing with ones emotions for sure.

Love this website Cus hearing others stories if conquering cancer n how they deal with it amazingly is inspiring in itself. And enjoy all the good info I’m learning and such good people on this website all of em it’s a…. Great place to visit and chime in.

Well gotta go… off to the hospital. We are frequent flyers n know all the chemo nurses by their first name. That’s not a good thing, but they do great services, we are thankful for that.

Out

[schmitthj007]

Looks like Israel is the second country opening up the option for a third shot in immune compromised patients after France.

The press release by Reuters mentions that “half of the 46 patients hospitalized in severe conditions are vaccinated and the majority are from risk groups”.

Of course we do not know if a third shot would have prevented those patients from getting that sick but data from organ transplant patients showed that the vast majority developed a robust immune response. My hematologist was open to get a third shot and I will try end of July. I just wished there was more leeway to get the shot officially after discussion with your doctor about risk and benefits.

[Youngen]

Following this closely and awaiting the final approval for it in Israel. They haven’t announced if it will be part of a trial only given to specific sub-groups initially or made available to all immunocompromised .

Also plan to discuss the option of stopping Ibrutinib temporality with my CLL specialist at Ichilov

[LeoPa]

I'm not having a third one. The definition of insanity comes to mind. Doing the same thing expecting a different result. Trying to grab the rattle snake by the tail. Or keep poking a non functional immune system with vaccines 😑 I'll need to see real hard evidence it helps first.

[Youngen in reply to LeoPa]

A small trial in the US on transplant patients showed that about 30% developed antibodies after the third shot. Anecdotally, I can share that I didn’t develop antibodies after my first two hepatitis shots and did develop them after the third dose. To each their own, but I don’t believe that there is a high risk in a third shot and am willing to take my chances.

[LeoPa in reply to Youngen]

They don't have blood cancer though.I was uneasy about the vaccine but went for it, considering it the lesser evil. I can just hope it won't do me more harm than good.

[AussieNeil Administrator in reply to LeoPa]

Subsequent vaccinations stimulate the already primed immune system and we know that even in healthy people, immunity to SARS-CoV-2 wanes over time. We are still learning how long immunity lasts, with variants and having a subsequent vaccination with a different vaccine complicating the answer.

There is already a proven precedent with repeat vaccinations improving outcomes with pneumonia vaccinations in CLL (prevnar then pneumovax giving the best response, but boosters of the same vaccine recommended), the general population with quite a few other vaccinations, where boosters improve protection, including annual flu vaccinations and some CLL specialists even suggesting two flu shots each year. We do "the exact same thing" with physical exercise, because we know that we don't get permanent benefit from exercising just once.

Finally, for those of us who have started, changed or stopped treatment, our immune system will not be in the exact same condition, so we may very well benefit from a third vaccination.

Neil

[LeoPa in reply to AussieNeil]

Except our muscles are not damaged and exercise works differently, how primed those damaged immune systems are nobody knows, the experiences of healthy people are not comparable, CLL specialists themselves don't know what these vaccines will do to CLL people in the long run etc... I'm not saying the virus is not worse. But the reports indicating badly increased ALC numbers, nodes like oranges post vaccination give me pause. We don't know half of what this can do to us. Like when my car's engine is breaking down and I keep pushing the pedal to the metal. Bad parable but still....Dubious benefits, unknown dangers. Life's hard.

[AussieNeil Administrator in reply to LeoPa]

From How does muscle grow in the body?

"Muscle hypertrophy occurs when the fibers of the muscles sustain damage or injury. The body repairs damaged fibers by fusing them, which increases the mass and size of the muscles."

medicalnewstoday.com/articl...

I used this example of "Use it or lose it", which applies to many bodily processes, including our immune system and the use of some other booster vaccinations. Per the Collins online dictionary "It means that if you don't continue to practice or use an ability, you might lose that ability.

Examples: If a person doesn't exercise his or her physical body, he or she will likely lose strength, stamina and endurance."

We need to keep across developing evidence to ensure we know the least risk options to ensure our best health. I hope we can learn from Israel's implementation of a third dose for the immune compromised healthunlocked.com/cllsuppo...

Neil

[LeoPa in reply to AussieNeil]

The analogy with muscles is ok for a healthy immune system. You don't exercise muscles after an injury, tendinitis or such, when they don't perform as expected. Life will show. I'm rooting for success for Israel.

[Youngen]

Ministry of health approved it for CLL patients today. Fingers crossed! 🤞

[RefuahShlayma]

I found this article from 18th July which specifically highlights CLL as an exception!!

hamodia.com/2021/07/18/heal...

I am wondering what the situation is here in the UK but as I have just started V and O it probably isn't the best timing for me to get a 3rd shot even if allowed. By the way I had a serological test which showed NO antibodies from both Pfizer vaccinations, so anyway wondering why a 3rd one would help...

[AussieNeil Administrator in reply to RefuahShlayma]

To quote: "The ministry did make exceptions, however. Those with chronic lymphocytic leukemia; multiple myeloma; and non-Hodgkin’s lymphoma, may receive a third shot, in consultation with a physician."