Shingle shot!

[Nanatoo4]

Is the shot for shingles ok to get or is it a big no no!!

[AdrianUK]

The old shingles shot is a big no no coz it’s live. The new one called shingrex is a bit controversial in CLL at the moment. It has been shown to work in some people with immune compromise but not CLLers specifically. So some people are taking it (especially if early in watch and wait) on the basis that shingles is awful and if there’s a chance this might help prevent it that’s worthwhile. Some CLL experts are not so keen on it due to the lack of evidence and a few people have apparently found it didn’t work for them personally to prevent shingles. No vaccination will ever be totally protective and given our status it wouldn’t be surprising if shingrex isn’t a perfect solution. But for me personally I am considering it when FCR is over.

[Cllcanada Top Poster CURE Hero]

There is continuous confusion on this topic...

Single live vaccine Zostavax.. NOT recommended for CLL patients.

Double shot Shingrix, OK, for some patients, talk to your CLL doctor..., not your GP, they don't know about this...

The recommendations based on HIV immunocompromised patients should be out this year... CLL specific trial data are a couple of years away...

~chris 🇨🇦

[GMa27]

My doctors do not want me to get the non live virus Shringrix shot. Still too new and wasn't tested on CLL patients.

[MsLockYourPosts Passed Volunteer]

And my doctor said to get it, but no one around here has it, so.....

I was very surprised when my brother, who is 65 with no health issues, told me that he had gotten it from his GP at his last appointment. Given the controversy, I don't know whether to call my brother and tell him that I'm coming for a visit, or assume that when it's the right thing for me it will be available around here.

[hazelton]

I have had both Shingrix doses with only a sore arm for about 3 days.

I am on ibrutinib and doing well. I do not want shingles.

[hhk50]

I had Shingles many years ago and, trust me, it's not something you want. After that I had the Zostavax but now my GP is recommending Shingrex. I'm planning to review with my CLL doc at the next appointment.

[wmay13241]

My wife's NIH CAR-T doctor does not recommend the Shingrex vaccine at this time - too little data on how it affects immuno-compromised people.

[CLLCalifornia-USA]

My doctor wants to proceed with caution. Not enough data at this time. I’ve had shingles three times. I was 35 the first time and looked like a picture of health. I’m ok with waiting for more data. Sally

[Teddo]

Since Shingrex is not FDA approved for CLL pts, NIH is doing a study. One hundred and eight pts who are tx naive ( like me )or on ibrutinib or acalabrutinib will receive the vaccine and be followed closely for 6 mos.. I get my first injection next week. They may still be seeking participants.

[napa]

My CLL doctor approved me to receive the Shingrix two dose shot. I did, the first shot went fine with only a sore arm, the second had major side effects, sore arm, fatigue, flu like symptoms, etc. for several days. Now I hope it prevents shingles or decreases any impact of shingles.

[Smakwater]

After consulting my oncologist I received the shingrix vaccine prior to treatment for CLL, and I had very little side effect.

It is my understanding that there is more risk for adverse affects from the vaccine if you get it during treatment or shortly after.

Consult a physician that is familiar with your disease, your progression, and who is well informed about the shingrix vaccine and CLL.

JM