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Question about the shingles vaccine

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dlb823
dlb823 Member Posts: 2,701

Have any of you gotten a shingles vaccination? I have always been extremely anti adult flu vaccinations, believing they're a crapshoot at best. But someone I know (who does not have mbc) now has a severe case of the shingles, and she is urging everyone to get the shingles vaccine. I'm going to email my onc about this, but I feel her point of view will be biased because she recommends the flu vaccine to her patients. Any experience with or thoughts on the need for either of these vaccines -- shingles or flu -- but especially shingles, since my friend's account of her pain sounds like something that would be a nightmare on top of mbc.

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  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015
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    Deanna - Great timing. It was on my list for tomorrow's Onc appt re shingles. I personally don't believe in flu shots (JMI) but I have seen my sister go through hell with shingles. I want to get it.

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015
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    Interesting that you've been thinking about it, too, Linda. One of my concerns is that I know someone else who actually got a mild case of shingles after getting the vaccine. Not sure how often this happens, but if our immune systems are already busy dealing with mbc, does that possibly increase the chances of that happening?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited July 2015
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    Deanna,
    Because of my exposure to so many children, and their not so great hygiene, I have gotten the flu shot for about the past five years. Prior to that, I contracted the flu almost every year, each time feeling sicker than the last. It has been effective for me, but each year the formulation changes based on what is known about flu viruses in the coming season. Clearly, they are not always right. Still, given my job, it's been worthwhile.
    I have never gotten the shingles vaccine, but have known a few people who have had shingles and were miserable. I too should consider it, but, and you might laugh, I am terrified of shots! I chose the flu shot over shingles because the threat of flu is more immediate for me. It sounds a bit illogical and I should try to get over it and just get the darn shot!
  • tina2
    tina2 Member Posts: 757
    edited July 2015
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    I have friends who have had shingles; they were in pain and miserable for a long time. Terrible stuff. I got the shingles vaccine as soon as my doctor suggested it several years ago, along with the pneumonia vaccine. At the request of a pregnant niece, I got the pertussis vaccine. I get a flu shot religiously every fall and have never had a single ill effect.

    As an aside, I will add that one of my younger brothers and I contracted polio as children during the last big U.S. epidemic, right before the Salk vaccine became available. It was a terrifying experience, particularly for my brother who was just three. We both came through beautifully, but many children and adults died or were permanently affected by paralysis and lung disorders.

    I believe in vaccines. They have spared countless people much suffering. Please get the vaccine if your oncologist approves.

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited July 2015
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    My mom, who is stage IV also, lives with my grandmother who got shingles recently. The oncologist told her that she can't take the vaccine because it is a live virus and the cancer and her chemo (Xeloda) makes it too risky that she will actually get the virus.

    Luckily, my mom did not catch anything from my grandmother even though they share a condo and my mom had actually touched her blisters and skin trying to figure out why she was having pain before shingles were confirmed by the hospital. She was told that the best thing she could do was keep her distance and be vigilant about hand washing and wearing gloves to keep all surfaces clean while my grandmother had it.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited July 2015
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    I am not a stage 4 person but can relate my shingles experience. Doc wanted me to get the shots but I put it off due to the cost (I was 58 at the time) I finished my rads and 6 months later why taking a vacation, I got the dreaded shingles. I was on a cruise by then, off the coast of Maine and far from docs.

    Not fun time, relied on some OTC things and as soon as home I went to doc for meds, Then called my onco and on her approval had the vaccine to prevent a reoccurance

    I believe that my immune system was the pits and that is why I came down with shingles. Get the vaccine if your docs will approve it

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015
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    Caryn, that's really interesting that the flu shot has protected you that well. I may have to reconsider that one as well.

    And Tina, wow, polio. I'm so glad you and your brother both came through it, but I totally get how that would strongly influence your point of view. I had to look up pertussis, and see it's whooping cough, which sounds like something that would be miserable to contract with bone mets that involve ribs.

    Golden Girls, interesting about what your Mom's onc said. I just emailed mine and will share anything she advises. I'm glad your Mom didn't contract it. I was about to email my friend today and ask if I could do anything for her, but the thought of catching it from her stopped me.

    Proudtospin, so sorry that happened to you and ruined your cruise. Thanks for sharing your experience.


  • diana50
    diana50 Member Posts: 253
    edited July 2015
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    I didn't get shingles shot because I had small outbreaks before mets. I didn't see any point in pushing more shingle virus into my body. Cautious.

    During taxol I got very sick with shingles. All over my neck. I was "shoot me". The pain was the worst ever. Still bothers me after chemo as chemo affects nerves.

    I told everyone I knew "get the shot". The problem with us is our immune system is compromised. If your onc oks it I say get it. you don't want shingles on top of MBC.

    Hope it all works out. But really a horrible experience. And it really doesn't go completely away.

  • diana50
    diana50 Member Posts: 253
    edited July 2015
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    imageYou don't want this. I was miserable for two months. Valtrex helped. But I missed chemo and was very sick.

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015
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    Oh, Diana, that looks horrible.

    The friend who has shingles now told me that when her Mom had them years ago, they actually went into her eye and she lost vision in that eye. I've also heard of them going places you would not want to contemplate -- yes down there, if you can imagine. Pretty scary to even think about!

    It's such a balancing act with our immune systems already probably stressed to the max.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited July 2015
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    Deanna,

    Last year's flu shot formulation was one of the least effective in recent years. I was lucky that flu was not prevalent in my area, so that may have protected me more than the shot itself. My school had a really rough time with intestinal maladies last year, probably Norovirus. Let's just say our custodian got way too many clean up calls! Somehow, I escaped, but I am diligent about hand washing.

    As far as vaccines in general I am all in favor. Are they perfect? Do they sometimes cause adverse reaction? No they're not, yes, they do. But, most people in the U.S. Do not remember a time when the diseases that vaccines prevent were common place. Since the majority of children in the U.S. are vaccinated, herd immunity often protects those who are not (though we have begun to see a breakdown of that). So, the argument that "My child is unvaccinated and is fine"is not a valid one in my opinion (and now, cannot attend public or private school in CA, unless they have a medical exemption). When I was in the Peace Corps, almost all of the diseases we never see here, were common place. They killed, crippled, disfigured and shortened the lives of many. Why? A largely unvaccinated population. How many of us have ever seen the effects of smallpox, polio etc? Rant over 😉

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited July 2015
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    Good info, kayb. Clearly, like many drugs and/or vaccines, certain pre-existing conditions contraindicate their use.
    No chicken pox? Man, I had everything but the mumps. The only vaccines I had in childhood were polio, smallpox and tetanus.
  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015
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    Excellent information, kayb. Thanks for finding and posting it!

  • Teakie88
    Teakie88 Member Posts: 97
    edited July 2015
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    dlb823:

    The story I can relate to involves pneumonia and not shingles. Got my first case of pneumonia ever in August of 2014 out of the clear blue. Hospitalized for four days and IV infusions for ten days after that. Fast forward six months later - pneumonia again in February 2015--hospitalized for four days again. I have never wanted to have the pneumonia shot because I always thought I would then probably get pneumonia from it. Two bouts of pneumonia taught me that I needed the shot, and I got it in the hospital after the second time. Thus far, no further problems of any kind. Soooo, it was also recommended that I get the shingles vaccine which I haven't had done yet, but probably most definitely will. I heard shingles are one of the worst things you can get, and they take a long, long time to go away. Ann

  • bestbird
    bestbird Member Posts: 232
    edited July 2015
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    Kayb provided excellent information!

    Anyone considering the shot should first speak with their doctor, as many of us are immuno-compromised.

    I got the shingles vaccine last year after weighing the pros and cons and speaking with my doctor. I had no reaction - it was a piece of cake. I recognize that I could still get a case of the shingles, but if so, in theory it should be milder than it otherwise would have been.

    Thank you for the reminder - I still need to get the pneumonia shots!

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015
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    I also asked this question in a FB group of bc survivors, and someone posed a question I couldn't answer. If you are unlucky enough to contract shingles, why do you need the vaccine after you've had it? Wouldn't having shingles expose you to the same thing that's in the vaccine, so wouldn't having shingles create the same future immunity you get from the vaccine?

  • ronniekay
    ronniekay Member Posts: 657
    edited July 2015
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    While on chemo, my onc told DH to get the vaccine, two-fold reasoning...so he wouldn't get it...nor expose me.  He got the shot & went to our eastern wash house for the weekend, to protect me from the live virus.  I was told at that time, no vaccine.  However...my DD got shingles & her dr said as long as I didn't touch her sores, it was ok to be around her & I took dinners, etc. When I told my onc about minor contact w/DD, she was furious.  The funny part...I was on acyclovir, for 4 days every cycle to help w/mouth sores.  The meds they gave my DD to help lessen the side effects of shingles-acyclovir!!!  So...I think I had a sort of immunity.  My gp has asked me to talk to onc about the shot now, as I'm not on chemo but...I forgot :-(.  I'll ask next time.  Thanks for the reminder Deanna!!!

  • sueopp
    sueopp Member Posts: 238
    edited July 2015
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    My oncologist said absolutely no shingles vaccine for me (live virus). I presume if one is immune suppressed, then the chance is greater that you could actually get the disease from the shot (?). Boo - I would hate to have to contend with shingles. SUE

  • tina2
    tina2 Member Posts: 757
    edited July 2015
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  • Beatmon
    Beatmon Member Posts: 617
    edited July 2015
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    You can have shingles more than once. I had the vaccine in between initial diagnosis and mBC. So glad that I had it. Those shingles are terrible.

    Afterward the injection, you can't be around new borns for at least 14 days.

    Good luck with whatever you decide.

  • 208sandy
    208sandy Member Posts: 582
    edited July 2015
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    I had the shingles vac two years ago just prior to my MBC diagnosis - my PCP and onc suggested it - DH and I had a dear friend (a retired dr.) who got shingles and literally died from the pain - he had a severe case and the pain lasted three years, he was on constant painkillers and it took his liver - DH got shingles a year later while he was hospitalized for tests but luckily a nurse spotted the rash within minutes of it forming and he was put on acyclovir and recovered nicely. Also PCP made me get the pneumonia shot twice - once before I contracted pneumonia then after - turns out there are many pneumonias and the shots don't cover every one of them. I spent 63 years with no flu shot and rarely got the flu but PCP nabbed me a few years back and I've had the shot every year and touch wood no flu for six years! Would definitely get the pertussis vac if around small grandchildren - whooping cough will break your heart if you ever see a small child in the throes of it!

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015
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    A member who is not Stage IV and was reluctant to post here sent me this PM with permission to share it here.

    I've had shingles twice. First time I was 43 then again at 46. Got the shot on my 60th birthday as insurance would not pay til then. I could still get it again,but it should be milder.So having it does not give you immunity sadly. I hope I never get it again!

    So I want to clarify... all stories of personal experiences with shingles are welcome on this thread. It's in the Stage IV forum because the decision on whether or not to get the vaccine probably is different if you are Stage IV due to immunity challenges, and I wanted to be sure to get a Stage IV perspective. But if you are unlucky enough to have ever had shingles, or have medical knowledge that can add to this discussion, please feel welcome.

  • april485
    april485 Member Posts: 1,983
    edited July 2015
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    My father had shingles...twice! He first got it in his late 60's and then again in his early 70's. Second time was milder than the first time. He really suffered that time. but they went away much more quickly the second time. After that, he got the shot and never got it again. he just died and was almost 90!

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015
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    Saw my Onc today and asked for the shingles vaccine. No contra-indications for me. She's faxing the script to my pharmacy shortly.

  • gypsyjo
    gypsyjo Member Posts: 112
    edited July 2015
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    I had shingles years ago, luckily a mild case. It was enough that I would never want to repeat. After dx, I read somewhere on this site about that shingles hits a high % of cancer patients. At my first meeting about treatments I asked my PCP. He highly recommended I get it prior to tx. I am so glad that I did. Hoping that it stays away from patients on this site.

  • DC197
    DC197 Member Posts: 58
    edited July 2015
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    I had a mild case of shingles while in my 40's. The rash healed, but the pain continued for a long time. When I turned 60, (before BC), I asked my PCP if I should get the shingles vaccine. He said there were two rules of thinking on that ... that my first case of shingles would be preventative or that it would not. I opted to get the vaccine because I have witnessed many severe cases of shingles in older family members and friends. Sometimes it comes back with a vengeance! I have seen 2 cases of shingles on the scalp which spread to the area near the eye. I was lucky enough to get vaccinated before my BC diagnosis, but everyone should ask their onc if it is advisable for them to get it.

    By the way, I also get a flu shot every year with no side effects (and no flu!)

  • Rainedrop
    Rainedrop Member Posts: 43
    edited July 2015
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    kayb, you can get the chicken pox. As an adult, that is as bad or worse than shingles. I don't say that lightly because my husband has had shingles 6 times. An adult can die from chicken pox. Did your pcp do a titre to be sure you have not had Chicken Pox? You are lucky that most kids have been vaccinated against them

  • nred2002
    nred2002 Member Posts: 15
    edited July 2015
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    I got the vaccine a week ago. I was more than a month out from the last dose of eribulin and my blood levels were fine. Today I had more blood tests and was puzzled that my WBC had dropped from 5.1 to 3.4. Then I remembered the shingles shot---pretty sure this did it. Also a bit more tired than usual. Another few weeks until I go on either Palbo or an equivalent study drug so will give my system time to process. Both Oncs I consulted said fine and go for it.

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015
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    I will have my zona vaccine next Wednesday along with pamidronate infusion.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited August 2015
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    Receiving the vaccine after contracting shingles generally moderates the severity of any subsequent cases.

    I was counting down the days until my insurance would cover it. I was ctually more concerned this time last year about contracting shingles than breast cancer, after seeing so many truly miserable cases among family & friends.

    After dx., my BS told me to get it before we started any treatment and it was a relief to finally do so. I was warned that some people do have a mild reaction at the injection site. My reaction was intermittent and certainly NOT enough to put me off the vaccine.

    Since the CDC has lowered the recommended age from 60 to 50 some insurers are (wisely) covering it starting at age 50.