YIKES : Yikesssss! Now I went and made myself... - CLL Support

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YIKES

Oceanbly
Oceanbly

Yikesssss! Now I went and made myself nervous! I've been advised by 2 doctors (my family doctor & my internist) to most definitely get the vaccine for shingles! Varicella Zoster - Shingrix Today I received the first part of the two part vaccine for shingles and have just read that this vaccine is not really recommended for people with leukemia/lymphoma / CLL. Holy mercy I say.!!! At present I'm on W&W since August, 2020 but my hematologist claims I possibly may have had leukemia since 2017 when my WBC was high and my lymph nodes were swollen. My count fluctuates back and forth from 11 to 19. Did I perhaps do something wrong here in getting that vaccine? One would think 2 different Doctors should know, correct?

20 Replies
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Was told by all my docs to get it. Got both shots 2 years ago and am fine. You might feel like cr*p for a day or two afterwards.

Jeff

Oceanbly
Oceanbly in reply to Justasheet1

Thank you Jeff

cllady01
cllady01Volunteer

Oceanbly, there are two shingles vaccines. The one you have gotten Shringx is the one that is a dead virus, so is safe for immunocompromised individuals like we all are with CLL.

The other one is live virus, Zostavax and is contraindicated for us--a no, no. .

Oceanbly
Oceanbly in reply to cllady01

thank you cllady01

Temida
Temida in reply to cllady01

Hi Claddy, do you know anything about Flu vaccinations during Ibrutinib treatment, please? Before treatment my haematologist advised to get vaccinations but I forgot. I was really imunocompromised on long term antibiotics. But now, during treat it will be contraindicated, isn’t it?Best wishes

Temida

cllady01
cllady01Volunteer in reply to Temida

Temida, because Ibrutinib lowers your immune function, it is important for you to talk with your Dr. in regard to the Flu vaccination.

I know it is difficult sometimes to "fess up" to forgetting what a Dr. has said, but it is more important for your health to let the Dr. know you don't know whether to go ahead with getting the "jab" as you Brits call it.

That way you give the Dr. a heads up if any concerns arise and you should expect from the Dr. the same level of involvement--they are only human also, so will forget things.

Building a relationship with your Dr. takes time, honesty, and willingness to be your own advocate.

Best wishes as you have begun to see the great work that Ibrutinib is doing for you. Stay safe.

PaulaS
PaulaSVolunteer in reply to Temida

Temida, I have been on Ibrutinib for 3 years, and every year my haematologist has told me to get a flu jab. So I've done that.

No problems with the jab - just a sore arm, slight fever and generalised aching for a few days. How much protection I get from it is uncertain, as CLL folk don't get as good responses as other people do, especially as their disease advances. But I'll continue to get it.

I haven't had the flu for MANY years, but of course I might just be lucky and it not necessarily be due to the flu jabs.

Paula

Temida
Temida in reply to PaulaS

Thank you, Paula, for answering that. Now I have clarity ❤️❤️❤️

PaulaS
PaulaSVolunteer in reply to Temida

Temida - one more thing. Ibrutinib doesn't usually suppress the immune system as much as earlier, chemotherapy treatments did. :-) In fact my immunoglobulins have improved since being on Ibrutinib - though not everyone is so lucky.

Temida
Temida in reply to PaulaS

My Ig level is creeping up as well ❤️ And after 1 month of treatment platelets and Hb went up. I’m very happy! Thanks againT.

lilica955
lilica955 in reply to Temida

I'm so glad for you! Blessings!

Got mine last year! All good!

Got mine too

You did the right thing. Why this is so misunderstood is a shame. Thr Shingix can't hurt you. The issue is will it work well for immunicompromised not that it is risky. Shingles was horrible for me.

Last year my husband participated in the NIH clinical study to examine how people with CLL respond to the Shingrix vaccine. Before this study, there were no large scale studies examining the effect of the vaccine in people with CLL. This was the reason Shingrix was not recommended "officially". I understand the study showed patients with CLL had a lower response to the vaccine - but a lower response is better than no response. No adverse events were reported other than the usual sore arm and low fever that many of us get with a flu jab.

I had a massive case of shingles four years ago after having my enlarged spleen removed due to CLL. I still have terrible pain from the shingles. I got two doses of Shingrix as soon as it hit the market. My doctors at the Mayo Clinic were ok with my getting the vaccine. I have had severe reactions to vaccinations, but I will still get the COVID vaccine when it is available.

I got the vaccine. You cannot get the live version of the vaccine. I had a reaction to both doses. Reactions are pretty common. My hematologist and doc both said I should get it.

Hello Oceanbly

I have been through B+R treatment and have not had Shingrix and don't intend to. My doctor said I had outbreak of shingles 10+ years ago, but it was so mild it is not an issue for me. Having said this (knock on wood), I will wait on shot. Blessings.

I'm also on W&W--diagnosed in 2017. Just received the second shot of Shringix yesterday. I didn't have any adverse side effects from the first shot other than a couple of swollen lymph nodes. Currently the only side effect I have is a sore arm. I know I definitely don't want to get shingles!

Hi! I had a shingles vaccine several months ago. My GP knew about my CLL and recommended I have it. I made the mistake of having the Tetanus shot the following day. The lymph-nodes nodes in my armpits got very swollen but after a week they were back to normal. I don't know if what happened was due to the shingles or the tetanus, most likely because of having both at the same time. When I consulted with my hematologist, he said not to worry, you will return to normal quickly.

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