Shingrix Vaccine: Dear fellow CLL patients, I... - CLL Support

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Shingrix Vaccine

bmbclaims profile image

Dear fellow CLL patients,

I am trying to decide if I should have the shingrix shot. I know many CLL specialists recommend it, but not all (Dr Kipps and Dr Byrd do not). Wondering what your experiences have been- particularly reactions.

46 Replies

why are Kipps and Byrd against it?

GMa27 profile image
GMa27 in reply to

In general, Dr. Byrd said too soon. Not tested on CLLers. Maybe someone else can elaborate on his thoughts. I communicate with him by e mails.

Dr. Pinilla at Moffitt last year told me no as well.

My local hematologist is on the fence about it. Not going to get it for now.

wmay13241 profile image
wmay13241 in reply to GMa27

My wife's NIH oncologist said to wait until immunocompromised patient Phase 3 testing is completed. To my knowledge this Phase 3 testing has not yet been reported out.

GMa27 profile image
GMa27 in reply to wmay13241

Probably take another year or so I imagine. Shot just came out last year. They hadn't tested prior to that on CLL patients. I want to know long term effects. That could be few more years of not more.

I didn't get eye LASIK surgery till it was tested 10 years prior. Even tho I am thrilled with it the past 20 years... now they are finding some changes in eye sight. I slightly changed.. less sharp. But duable. So even 10 years out wasn't enough to know it all.

💕

No reaction. Had both shots. 2nd one about a year ago. Was on acalabrutinib when received the injections. Oncologist encouraged me to do it. After talking last week to 58 yr old who is currently having shingles I am very glad I had it. She has cornea damage and in incredible pain. Have not read up on Dr. Kipps and Byrd opinion on why to not receive the Shingrix injection. As a reminder Shingrix does not contain live virus.

Hi reading your post you said you are on Acalabrutinib for the past year or so .As part of a trial I have just started Acalabrutinib 3 weeks ago will you be on this indefinitely? Just like some info about side effects etc from someone who is on this drug cheers

uihwki profile image
uihwki in reply to Yidarmy69

I've been on it for 18 months - front line, off label (not on a trial). Only side effect was headaches for the first few weeks. Took excedrin high tension headache (doesn't contain aspirin) which eliminated them. Phenonenol results- with the exception of IgG levels all other blood markers are in the normal range.

Yidarmy69 profile image
Yidarmy69 in reply to uihwki

Thank you my noades disappeared in about 2weeks no side effects

Like uihwki my results have been great. All my standard markers were in the normal range within 8 months. I do not think I have had any side effects. Mostly was just so relieved to not have the excruciating pain from ibrutinimb.

I was diagnosed with SLL, 17p deleted, unmutated, almost 59(now, diagnosed 3.5 yrs ago), female in US . With these less favorable markers, my onc doc has said I will be on this as long as it is effective. He has not wanted me to add venetoclax and/or obinutuzumab until the acalabrutinib stops working. I am going to ask him about this again at my appt next month. I keep wondering if it is better to try to knock more of it out now rather than wait. I understand that he wants to keep something waiting in the wings but I am not sure if that is the most current thinking.

Hi in January Venetoclax is being added to my Acalabrutinib I am on a trial in Uk

Dr Kipps made no objection to me having the Shingrix vaccine and I had them without problems. Perhaps there is something specific to your situation that led them to make this recommendation in your case?

You're likely to get a wide variety in responses about the degree of 'reactions' to the two Shingrix vaccinations. Several will say that the discomfort, if any, was minimal ... and others may report that the affected arm was uncomfortable for periods of up to 5-days.

But, there is an important issue to keep in mind.

The body's reaction to the vaccination is the signal that the system is building its capacity to fight future potential shingles exposure. The discomfort is a sign that the antibodies are making their presence known. Thus, the body's signal of a reaction (including discomfort) is one of the signs of protection by the vaccine. In general, the more powerful are the reactions, the greater the body's power in fighting future shingles exposure. It is therefore of real benefit to experience 'reactions' because they're a clear signal that the body is taking note of the vaccination's protective power.

Having met more than a handful of people in my circle who have experienced repeated eruptions of full blown shingles I cringe at the thought of getting shingles myself. Frankly, I would go through weeks and weeks of discomfort to be able to avoid the cruel effects of the blisters, fever, fatigue, headaches, pain, disfigurement and the potential for neurological problems including encephalitis and vision loss.

"Up to 20% of patients with shingles experience postherpetic neuralgia, a chronic, debilitating, painful condition lasting months or years. Herpes zoster ophthalmicus, which affects up to 25% of patients, potentially results in pain, disfigurement, scarring, and vision loss." ( www.pharmacytimes.com/publi... 2012/the-pain-of-shingles-symptoms-may-persist-after-the-rash-heal ).

The pain from a shingles outbreak is typically intense. We know that shingles reoccurs time and time again. My thinking is that the relatively mild discomfort from the initial vaccinations is a small price to pay to avoid the cruel effects of shingles.

Caven

Dr Keating recommended Shringrix vaccine for me. I have had both shots with minimal discomfort at injection site. I stopped taking Valtrex after second shingrix shot. Does the vaccine work? I don’t really know but I am glad I took it. I had what I think was a mild case of shingles twelve years ago, before any Cll diagnosis. I sure wouldn’t want the full blown type.

Jeff,

Why did you stop the Valtrex? As I’ve previously stated, I’ve had both shots and Dr. Wierda still started me on valacyclovir with the ibrutinib.

Jeff

All I can assume is that evidently Dr Keating believed that the vaccine alone was sufficient protection for me while Dr Weirda may not be fully convinced yet of the efficacy of shingrix in the Cll population.

I never used to take pills and now I find myself on all kinds, so I was happy to shuck the valtrex. I am sure if I end up with shingles I will wish I had stayed on it.

I suspect Weirda’s rationale would be that there is insufficient data to know how effective shingrix is and that valtrex offers an extra layer of protection. Next time you see him, ask him and let me know what he says. I see Thompson in January and I will ask him what he thinks.

Jeff,

I asked him why and he didn’t get into specifics but merely replied when I told him that I had both shots, “yeah, but how do we know it works?”

My hem/onc at Univ. of Miami had me on antivirals throughout my BR 5 years ago and for 6 months after treatment ended. That was before my vaccinations of course.

Jeff

Well that’s pretty much what I thought, Weirda wants to wait to see data on the efficacy of shingrix in Cll patients before taking them off anti-virals. It’s hard argue with that, assuming there are no side effects or toxicities with long term use of anti-virals, which I don’t think there are.

fish61 profile image
fish61 in reply to cajunjeff

I had the old shot 8 years ago, then Wierda put me in Valtrex for 7 years.... he recently advised Shingrex

, I took the first shot and had a month long reaction ( pain in arm and chest )... told Wierda and was advised to not take the second shot .... and stop the Baltrex ... I will see him in 2 weeks and further question him .

In summary

-We are all at risk of shingles which is a horrid disease.

-We know the new shingles vaccine works really well in people who don’t have CLL.

-we don’t yet know if the new shingrix vaccine works well in people with CLL, but there is no logical reason to think it would cause shingles to occur (it is not a live vaccine). There may have been one or two cases where shingles did arrive soon after a vaccination but that doesn’t mean it’s linked since for example someone recently reported being recommended to take the shingrix and delaying this but getting shingles shortly after. If the vaccine had failed in their case to prevent the shingles we might now be blaming it for causing it when actually this would have been a co incidence.

-some doctors advise to take both shingrix and aciclovir to minimise your chances of getting shingles (this may well be dependent on the individual patients clinical condition).

— shingrix is currently in short supply in the USA and is essentially not available outside the USA (you can for example pay privately to get it from one London based pharmacy in the UK for example). It seems the company is attempting to ramp up its production.

—people who are currently on or recently received Active treatment that lowers lymphocytes may respond less well to vaccination than those in watch and wait.

—-as always this is a good thing to talk to your doctor about your specific situation and it’s one of those things that doctors may also have differing perspectives on.

Justasheet1 profile image
Justasheet1 in reply to AdrianUK

Great summary Adrian!

in reply to AdrianUK

Just saw my doctor, and asked about the possibility of having the Shingrix vacine, he said even if the NHS had the vacine, l wouldn't be able to have it until l was over 70 (I'm 62) .... I've had shingles, and it has damaged the sight in my right eye.

In London it is £230 a shot. I will have to do more research before having it.

AdrianUK profile image
AdrianUK in reply to

Have you been treated for CLL yet? The main thing that’s stopping me having Shingrex is that so far I have almost no lymphocytes at all. So logically it seems to me at least perhaps it won’t help much. Having said that I did take the flu jab. And I am on aciclovir.

Are you on prophylactic aciclovir to prevent recurrence?

I think that whilst it’s a lot of money it may be worth some people in the UK self funding the injection. Of course having lost the sight in one eye makes the risk feel more real too I’m sure.

You mention your doctor was thus your GP or your specialist? I’m sure that initially he is right the NHS is likely to limit availability to those who match the study. But there is a study ongoing at the moment in the USA with CLL patients maybe eventually it will lead to us having t it available.

But do we want to wait?

We in the uk don’t tend to like spending money on our health. I’m sure for some people though this will be something worth doing. I’m just not yet sure if I will Personally be one of them.

in reply to AdrianUK

Hello,

I'm really sorry for the late reply(l don't receive healthunlocked notifications, for some reason) ......

I had shingles (again!) over the Xmas and new year period..... When l eventually got a doctors appointment, l was told, l should have been admitted to hospital..... and have an iv fitted..

I have been given a emergency pack of aciclovir tablets..

I'm not on any kind of medication for my early stage cll, in fact, the hematologist has refered me back to my GP for my annual cll bloods...

I've contacted a clinic in Fleet street, London..... informing them of my cll, they said that l can have the shinglix jabs (£600), as it is not a live vaccine.....

Justasheet1 profile image
Justasheet1 in reply to

You need to stay on acyclovir permanently if possible. Even if you can get the vaccine in my opinion.

Jeff

in reply to Justasheet1

Thanks Jeff,

I have appointment with ny GP next week, I'll ask about the Acyclovir and Shingrix.... Thank you for your advice.

Justasheet1 profile image
Justasheet1 in reply to

I’m on valacyclovir daily and had both of the Shingrix shots. I hope to avoid the shingles as you do too.

My husband just completed a NIH clinical trial to determine if the Shingrix vaccine should be recommended for CLLers. He received two doses. Three months after each shot NIH checked his blood. They ran tests to determine the types and quantities of antibodies in his blood. They ran many other tests - but way beyond my expertise. My understanding is they will use the results from this trial to make a recommendation on the use of Shringrix for patients with CLL.

Ann,

If your husband gets any inkling of their recommendation before it hits the press, please share.

Jeff

kathyg profile image
kathyg in reply to Annvaughan

I have had the two shots go back to NIC in Dec to check my blood. I felt bad after each shot for about 6 days , fine now. Glad I did it , my mom had it and it was awful.

Annvaughan profile image
Annvaughan in reply to kathyg

My husband had a mild reaction to the first shot - and had a greater reaction to the second shot (low grade fever, swollen red raised area, and generally feeling "bad". This all resolved after a couple of days.

kathyg profile image
kathyg in reply to Annvaughan

I think the 2nd shot was a little more intense, but each lasted about 6 days. I felt achy and tired. I also had a rash both times that went down my arm where the shot was. It was hot to the touch but that went away within the six days.

PaulaS profile image
PaulaSVolunteer

From what I have heard, there is great variation in the amount of protection that CLL people get from ALL vaccinations, whatever they are. It seems hard to predict who will get good responses, and who won't. The immune system is extremely complicated and there's still a lot we don't know about it.

It's generally recommended that people get their vaccinations as soon as possible after diagnosis, before the disease has progressed and our immune system is more damaged. However, better late than never! I was given pneumonia and meningitis vaccinations at quite a late stage, and blood tests afterwards showed I'd produced good antibody levels (ie got decent protection).

I would imagine it is the same with Shingrix - that some people will get good responses, but some won't. The important thing is whether it does any harm, and apart from a few days soreness and possible fevers, which resolve after a few days, I haven't heard of it doing any harm. The harm that can come from getting shingles seems far far worse...

Paula

P.S. Having read more responses on this thread, I will add to possible side effects - "generally feeling bad for up to a week, rashes, and blisters bigger than golf balls". I still reckon that's better than getting full-blown shingles, but it's good to be aware of these possibilities.

placebo_09 profile image
placebo_09 in reply to PaulaS

Good point PaulaS.

I paid to have the Shingrix vaccine here in Canada about 18 months ago. I didn't experience any side effects . I ended up getting shingles a year later, albeit about 6 months after having my spleen removed.

PaulaS profile image
PaulaSVolunteer in reply to placebo_09

Sorry to hear that, placebo_09. Well, it was good you didn't have any side effects, but NOT good that you got shingles later...

Sadly it's well-known that no vaccinations are 100% effective, and are even less effective for CLL sufferers. But hopefully vaccinations give us a bit of protection, even if it's not as much as "healthy" people get. How bad was your attack of shingles?

Paula

placebo_09 profile image
placebo_09 in reply to PaulaS

Not too bad thankfully. I discovered it and started treatment almost immediately.

AdrianUK profile image
AdrianUK in reply to placebo_09

The interesting thing is it’s possible that your shingles might have been worse if you hadn’t had the immunisation. We’ll never know.

Hello bmbclaims

My H/O is recommending shingrix shot for me, but I am on the fence. I don't think I have ever had shingles, but my GP diagnosed me with shingles 10-15 years ago. Little spot about 1/8 inch wide by 3/4 inch long, went away in about 2 weeks using a cream. I have never had chicken pox. Not much help to you. I am going to ask my CLL Specialist next time I see him. Blessings.

I saw Dr. Kanti Rai several weeks ago and he told me in six months get the shringrex vaccine.

My CLL specialist suggested getting the Shingrex shot. Had such a bad reaction (blister size between a golf and tennis ball) that a case study was written about me with the NIH. Dr. Said not to take second shot. Everyone’s body reacts differently.

I go to Kipps and Choi. I got the 2 shots. From what I understand is Kipps is not sure if it is always effect with Cll patients.

Be well,

Hoffy

I developed shingles after receiving the shingles vaccine. It was not a severe case but lasted a few weeks. I only have one nerve on my ear that is painful to touch as a lasting result. I was not warned that this might happen as a result of having a lower immune system.

Why did you get a live vaccine? Also, did you ever get some advice for your acute lymph leukemia? You should probably let the CLL crowd here know that you might react differently to stuff.

Jeff

Doctors never said that I should not get the vaccine. They were fully aware that I had gotten it. When I was back in the office with the red blisters all over the right side of my face, ear, and scalp, and neck, they called in another oncologist, the supervisor and they had no idea what it was and gave me no advice as to what to do. I went to local Urgent Care Center the next day because it was a Saturday. They took one look and said it was shingles, gave me a prescription and said if there were more problems to come back. At this point, I had not been on Imbruvica very long and had many skin conditions, anxiety, and the added pain from shingles. My oncologist had offered no help and I had been told I would be on Imbruvica for the rest of my life. I called my Internal Medicine Physician who truly knows me. He saw me and really listened to my problems with my current oncologist. I asked him for a referral to another Oncology Group. He did this for me and within a week I found the most wonderful Oncologist. I did not feel like I was just another number. I actually look forward to my appointments. I am still nervous but at least it doesn't effect my blood pressure to go to my appointments.

They should have known better. I’m glad you have a new doc now. I hope that you are feeling better too.

My only reaction was a slightly sore shoulder for a few days, my doc highly recommended

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