Shingrex?: I am due for a booster shot for... - CLL Support

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Shingrex?

Moqua profile image

I am due for a booster shot for shingrex tomorrow. I in formed my doctor today and she advised me against it, the last doctors appointment was with a different doctor, who ok’d the injection. I will be starting my fifth month on ibrutinib and wasn’t able to get the booster in a timely fashion, any thoughts? Michael

35 Replies

I personally had Shingles for 3 years and nothing and no one would keep me from getting the Shingrix!! I got it as soon as it came out.

I have been on Leukeran and Imbruvica and my doctor had no issue with me getting the shots.

Panz 🙏☘️💕

Moqua profile image
Moqua in reply to Panz

The doctor quoted official guidelines, but was going to consult with the other doctor and get back to me. I had the first shot before I started treatment, then since then I have not felt too good, then covid came along. I should have had the second shot within six months, but my pharmasist says up to a year now. The issue is do I get it while I am on ibrutinib? Michael

Why did your doctor say no? Did you have a bad reaction to the first shot? I've seen what shingles can do and personally, I don't want it! I had both injections with very very side effects.

Moqua profile image
Moqua in reply to albie58

Hi, albie, I had no issues with the first shot and fully intended to get the second before I started my treatment, just trying to catch up. I had bloodwork yesterday and every thing was headed in the right direction, so feeling upbeat! Doctor’s happy, so I’m happy! Michael

AussieNeil profile image
AussieNeilAdministrator

Having had the first shot, I don't know why your second doctor would say no to the second shot, but specialists aren't unanimous in recommending it, given we are still awaiting the results of how those with CLL go with Shingrix. See: NCT03702231: Response to the SHINGRIX Varicella Zoster Virus (VZV) Vaccine in Chronic Lymphocytic Leukemia (CLL) Patients that are Treatment Naïve or Receiving Bruton’s-tyrosine Kinase Inhibitor (BTK-I) Therapy ( clinicaltrials.gov/ct2/show... )

Bear in mind that while you are taking Ibrutinib, you aren't likely to have many healthy B-cells to respond to the vaccine, to mature into plasma cells to produce immunoglobulins, but you may get some T-cell based immunity.

Neil

Moqua profile image
Moqua in reply to AussieNeil

Thanks Neil, I will consult with my pharmasist first before proceeding. Michael

I think there is a question out there as to how much protection the shringrix vaccination affords us. I had both shingrix shots and am currently dealing with a very small and mild patch of shingles. I believe the vaccine worked well enough for me to prevent a full blown shingles outbreak.

I can think of no reason not to have the booster. Its not a live vaccine. Worst case scenario, it just doesn't work. I am not aware of any dangerous reactions to the vaccine.

I think you should have an explanation as to why you should not have second shot. Maybe there is a reason us lay people don't understand.

if I was not satisfied with the answer, I would seek another opinion. Shingles can be extremely painful and dangerous for cll patients and even a vaccine providing partial protection is worth it. Ask anyone who had full blown shingles if they would have liked a chance at immunity or partial immunity.

Moqua profile image
Moqua in reply to cajunjeff

Thankyou cajunjeff, I am waiting for a phone call right now to see what she says. I may just go ahead with it after I talk to the pharmasist, I don’t want to waste the first shot, it was quite expensive! Michael

I had the shingles vaccine while on Imbruvica, both shots. My doctor supported it, he may have even suggested it. He did recommend I get the dead vaccine.

Moqua profile image
Moqua in reply to NaderE

Hi Nader, my doctor just called and said I would be wasting my money if I get the shot as it will not make significant change, I will however consult with my pharmasist for confirmation. Michael

NaderE profile image
NaderE in reply to Moqua

Michael, you probably should speak with folks that actually got the shingles. It can be horrible lasting up to two years. As our immune system is compromised, it didn’t take long to have me convinced. Good luck with your decision.

Moqua profile image
Moqua in reply to NaderE

Thanks Nader, I do know people that have had shingles and I have had cold sores for most of my 72 years so I have an idea, most of mine have been in and around my eyes, not nice! Michael

lexie profile image
lexie in reply to Moqua

The ineffectiveness of the Shingrix vaccine is exactly why my CLL specialist and my hem-onc have advised against it, that it is a waste of time and money for immune compromised. Plus as Neil stated the data for CLL patients hasn't come in yet. And I have had severe shingles in the past so I speak from experience.

Justasheet1 profile image
Justasheet1 in reply to lexie

Lexie,

Both my expert and regular hematologist both said to get the Shingrex shots prior to beginning on ibrutinib.

Perhaps it would have been a different suggestion now that I’m on ibrutinib.

What is the harm in getting your second shot?

Jeff

Moqua profile image
Moqua in reply to Justasheet1

Hi Jeff, my doctor said I could have the shot, but it would probably be a waste of money, I think there needs to be more info.

lexie profile image
lexie in reply to Justasheet1

Well I've never had the first shot, so there's that!

Justasheet1 profile image
Justasheet1 in reply to lexie

😱

ClassyLady3 profile image
ClassyLady3 in reply to NaderE

My oncologist suggested it

My CLL expert said no. It hadn't been tested on CLL patients. Testing now. It may not work on us anyway. A few reported they got shingles after shot. I decided to wait. During covid I can't afford to have any symptoms and not know if I had reaction from shot or covid.

I have had CLL for 14 years. I can wait longer to see what happens with testing. 💕

Moqua profile image
Moqua in reply to GMa27

My doctor phoned me after hours to let me know that it in all likelyhood it would not help and to save my money, pharmacist concurred, that’s good enough for me! Michael

I had my first shot before treatment and the second one after starting on Ibrutinib.

Not sure how much additional protection I got from the second shot but even a small amount could make all the difference

Moqua profile image
Moqua in reply to Bell53

Thanks Bell, sorted between my doctor and pharmacist, it would likely be a waste of money, so I won’t have it. Michael

I had my first shingles outbreak when I was 35. After BR I came down with them again and one other time. Last year I took both Shingrix vaccines. I can’t explain the pain of shingles. I will take my chances with Shingrix. I hope to never experience the pain of shingles ever again. Also, I am on my third year of Ibrutinib. Good luck.

I really can’t help to make this comment. What kind of doctor would advise you not to take the Shingrix? I’ve had 3 in my family who had shingles and you would not want to go through the agony of it . My oncology Team and hematologist insist on having these vaccines. I’m on Imbruvica and I was told to make sure I have flu shots and the Shingrix . Thats how it is in Canada .

I read HealthUnlocked often and most comments I read from people give me confidence to fight this disease of CLL but some I have read I am puzzled that some patients don’t have a hematologist assigned to them .

Moqua profile image
Moqua in reply to Kmegood

Hi Kmegood, I enquired about a hematologist with my doctor. She said that the clinic that I go to does not have one and they have a lot of patients with cll. The way it is here. I would have to travel quite a way for a good hematologist and I might add that after quite a few years, I have changed my doctor and now feel better for doing so, also my labs are all heading in the right direction. Michael

Kmegood profile image
Kmegood in reply to Moqua

I’m happy for you . As long as your in good care and if your labs are good then you should be fine .

I got the Shingrix vaccine right after I was diagnosed with CLL. It was one of the main vaccines my oncologist recommended. I don’t know why your doctor wouldn’t recommend it.. ?

Moqua profile image
Moqua in reply to Giantsfangirl

Hi there, I was advised to have the vaccine and had the first shot before I started on ibrutinib. I didn’t have the follow up shot, as I was not feeling too good. Since I am back on treatment my health is much improved, but the jury is out on the benefit of having the shot whilst on the ibrutinib. Thanks for your interest! Michael

Moqua,

I had the shingrix vaccine when it first came out and about 4 months prior to treatment with O + V.

First shot - no symptoms.

Second shot - flu like symptoms for a day.

Two years later - no shingle related conditions.

That's just me though,

JM

A few years ago, a friend suffered from shingles. His ordeal prompted me to investigate vaccines (also at his urging). I was subsequently diagnosed with CLL, and after being on Imbruvica for a year, at 71, I got my first shot, along with my wife. She had a sore shoulder for 2 days, while I had zip. Still on Imbruvica, I had the booster about 5 mos later. Wife was “fatigued “ for a day — still no side effects for me. It’s been 2 years since the Shingrix shots and neither of us has had any Shingles symptoms. Is the vaccine working? Was it worth spending the money? Who knows? The peace of mind doesn’t hurt...

I am on Imbruvica and took first Shingrix in Jan and second in May. I had no problems. Best wishes.

Win

Glad you brought this up as my hematologist is recommending the Shingrix vaccination. I'm on acalabrutinib and asked if this was a problem. My concern being whether my immunosuppressed body could handle the vaccine. The hematologists response was that it would not be a problem. He urged me to go ahead immediately. I'm not so sure!?!

I had shingles in 2014 and it was no fun. The rash and pain hung around for8 weeks or so. The worst thing to be concerned about is the most common complication of shingles and that is long-term nerve pain called postherpetic neuralgia. This is of deep concern for me and so I think I will be going ahead with the shots. My understanding is that postherpetic neuralgia can be much worse than an episode of shingles.

My first CLL specialist told me to get it. I waited, since I heard about some reactions. It was just out, and I wanted to see how it went. I have been on daily Valtrex since first getting a small outbreak. (I did have the original Shingles shot at age 60.) When I asked my new CLL specialist, from the same medical facility, he said empathically no. He had been dealing with patients admitted with reactions. So, I’ll keep taking my daily Valtrex.

It does appear that the effectiveness of the vaccine is not yet known. Dr. Byrd at Ohio State is very much in favor of the use of lifetime Valcyclovir for any CLL patient who has had a previous case of Shingles. This is what I take daily after one mild and one horrible case. When the study determines the effectiveness of Shingrix, I'm sure that he will make his recommendations based on how it compares to the 90+ percent effectiveness of Valcyclovir.

bkoffman profile image
bkoffmanCLL CURE Hero

Don't understand why not.

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