CSN Login
Members Online: 11

Shingles Vaccine

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi all. I was just catching up reading the thread on Dan's latest challenge with his relapse after his SCT(best wishes Dan). Some were commenting about recommendations for the shingles vaccine. I am curious too. I have had about 15 episodes of shingles since I had Hodgkins Lymphoma in 1989. This past year I had 5 cases. Some of my doctors say it is impossible to get shingles in the same body part, area twice. Also, some do not believe shingles can occur without the blister outbreak. Well, I've disproved both of these statements!
Anyway, my Long Term Follow Up specialist at Sloan says I would not be able to get the vaccine. Our immune systems for Lymphoma or Luekemia survivors would not be able to handle the introduction of the weakened chickenpox virus to our system. Also, it is important to know if you had chicken pox. If you have not, I undertand that you can not have the vaccine.
Wondering about all of your docs recommendations.
Thanks,
Cathy

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Hi Cathy,
Both my primary care physician and my cancer doctor said I could get the shot, but neither one asked me if I had chicken pox as a child. Nobody in my family remembers if I did, Mom and Dad have passed and also grandparents. So....I'm not going to get the shot until I get some solid answers. I go in next Tuesday for my Rituxan infusion, so I will grill my doctor for better information, and then report back what we discuss. I sure would like to get the vaccine, but definetely don't want to if it could harm me. Thanks for the info...I plan to print this out and present it to my doctor. Take care...Love, Sue
(FNHL-2-3A-6/10)

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Another interesting point is that I read that the vaccine is about 51% effective. My MIL told me about the "never having chicken pox" from her PCP part but that may be outdated info. I remembering reading somewhere that the majority of us adults have had the chicken pox whether we remember it or not. Good luck with your infusion and let us know! Cathy

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi all,
I was told by my Dr that I could not have the shingles vaccine as it is live. Strange how Drs. differ. Joanie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi Cathy, As you might remember I had non hodgkins lymphoma nearly 25 years ago and my GP told me I needed to have the shingles vaccine however I have not had it yet as I had a feeling that I shouldn't take it. When I went through my first treatments for cancer so long ago they told me to never have a live vaccine but over time so many things have changed I am unsure now. I just made an appointment to see my origianl bone marrow transplant surgeon to ask him this very question as well as speak to him about flu vaccines which I went ahead and had plus the pneumonia vaccine you take every few years. I even wonder about those.

I see the transplant surgeon in 3 weeks so I will let you guys know what he says but so glad I listened to my instincts and held off just in case he agrees that I should not have the shingles vaccine due to the lymphoma issue. He may say to go ahead but I will definitely mention the Sloan recommendation to you. Information is power, that's for sure, in so many ways. Instincts shouldn't be ignored as most of us have found out through this whole cancer journey.

Thanks for the posting Cathy.

Blessings,

Bluerose

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Bluerose,

It is so helpful and comforting sharing resources and thoughts between us survivors.

I bet your transplant surgeon is anxious to see you after all these years.

As for other vaccines, I do get the annual flu vaccine as this is a "killed virus" as well as the pneumonia vaccine. Twenty years ago when I got the pneumonia vaccine my doc told me it was good for life. Of course now that info has changed.
Take Care!

Cathy

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Yuppers they told us many things 20 years ago that now we are all finding out need to be tweaked shall we say. lol. Too bad that they can't keep lists of who they told what so that when they find out differently they can 'untell' us. lol. I was going around repeating and believing a million and one things I was told, especially about live injections, but now one by one things are changing. My visit to my transplant surgeon who I haven't seen for years and years is for this very reason and for the shingles vaccine. I know he is going to say to get them all again but I have to hear it from him as he seems to be the only one in the know with the latest.

This site though empowers me and others with information from other survivors on this topic and so many others so that when we meet with our specialists we feel strong in knowing that it's 'just not me' who has this issue and also doctors aren't able to say 'haven't heard that before from anyone else' either. Knowledge is power and sometimes going through the cancer journey, as you well know, makes one feel powerless at certain points.

Will let you know what the transplant surgeon says. I am seeing him this week.

Blessings,

Bluerose

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 997
Joined: May 2012

Cat,

I wrote something regarding this elsewhere at CSN. My neighbor got shingles soon after going into remission from late-stage NHL. The tie between the two diseases needs to be better discussed, it would seem. I had HL, but no shingles before or since.

Max

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi,
Interesting that I found this post this morning because I think I have shingles again. I have had them before (before NHL dx) years ago. I obviously have not had the shot but my primary care had said it would be ok last year. I actually forgot to ask my onc and now am getting chemo so it just never came up.

Ugh. I guess I have to go to my primary or dermatologist tomorrow to get a proper dx but I'm wondering. When you got them were you getting chemo at the time? Did they give you the anti viral medicine? Did you always have the nerve pain? Do you have neuralgia from it?

This is just such a never ending road... so tired of things "breaking " on me!! I looked it up last night and saw just how common shingles are with our disease. Go figure.

Hope you are feeling well.

love and prayers,
Donna

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

to hear that you may have shingles. I have become very adept on knowing when they are coming therefore I have asked my pcp to write a script to have on hand just in case. The sooner we get the anti-viral meds in our system, the less chance of post herpetic nueralgia or other complications.
My shingles have all been post treatment. My chemo was done in 1994 and the last 2 years was the worst for shingles out breaks. I think they have cropped up when I was over doing it and stressed out my immune system. Years ago, a case led to my dx of HL recurrence. I am usually left with a lot of headaches, scalp pain,tingling and itching. I started taking Lyrica for Radiation Fibrosis Syndrome and these symtoms went away. I stopped the meds and have some residual symptoms that are ok to live with. I guess we just adjust to these bothersome annoyances and accept they are normal for us.
First of all, I hope you don't have shingles and if you do that they are a minor blimp in your journey.
Take Care,
Cathy

Keith1961
Posts: 10
Joined: Jun 2011

I got shingles at age 47. Couldn't believe I had shingles since I was healthy and active. Three years later I was dx with non Hodgkins. I too wonder if there is a connection.

Keith1961
Posts: 10
Joined: Jun 2011

I got shingles at age 47. Couldn't believe I had shingles since I was healthy and active. Three years later I was dx with non Hodgkins. I too wonder if there is a connection.

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Interesting comments here and there does seem to be
conflicting information out there. It may just be coincidence,
but I had shingles a few years ago myself.

I also tested positive and was treated for H Pylori during my
cancer treatment. There's suspicion that certain viruses and
bacteria (H Pylori) may be related to cancer (lymphoma). Epstein Barr
is another one that comes to mind in my reading.

I found these two posts:

Mayo Clinic

WebMD

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Hello All,
Been a long time since postinng, but have been following the site for some time.
I have also been wondering about Shingles and the vaccine. I had the pleasure of a shingles outbreak last Feb. I can tell you, that was the most painful experience ever! I really feel for you, having to go through that many occurences.
My PCM(military) at first wanted me to recieve the vaccine, but upon further research and talks with my Oncologist they recommended against it.
Cathy, you absolutely right, due to the chemo infusions and the havoc it creates with our immune system, the introduction of the virus vaccine is not a course of action we need to take.
On that note though, I had noticed that when I came down with shingles was also around the same time my work mates were also saying that thier children were having chicken pox outbreaks at the schools. Strange coincidence, do not believe so.
Everyone remember, like Cathy said our immune systems have been attacked and are comprimised. So, just like when we were in treatment you need to stay aware of conditions around us. I knkow it's difficult, especially when we are all wanting to go back to normal"
but we now have a "new normal" and we need to protect it.
I'm not saying to close up in a bubble, just take those extra steps to to keep yourself healthy and safe.
Always talk with your PCM about your decisions. They might not understand were we are coming from,

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network