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Shingles

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Well went to see my onc this afternoon. I have shingles on the same arm as the lymphadema. Does it ever stop?

I am miserable.

yesyes2
Posts: 465
Joined: Jul 2009

I feel so bad for you, how really awful. I've had shingles twice. Once on the tail bone area and once on the side of my face. I consider myself luck as both times the cure was worse than the disease. I'd really freak out if it happened on my lymphodema limbs. Have you discussed it with the lymphodema clinic people? And are you taking those wonderful, not really, anti viral drugs that they prescribe?

I would think you do feel miserable. And I agree, enough already, you need a break from all this. I'm sending lots of positive and loving thoughts your way. I hope you feel better soon.

Leslie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Beth,
So sorry!!! Steve broke out with them right after I was diagnosed with my cancer. He said it was all my fault from giving him new stress...ha!(he was joking of course). We caught his very early and immediately got him started on the anti-viral drug.It was really painful for 2 weeks and then it eased up once the blisters scabbed over.Not fun my friend, and "YES"..you DO need a break! Take care and I'll keep you in my prayeres.
Much love...Sue (FNHL-2-3A-6/10)

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

That bite's!!!! it does seem to never stop! feel better Vinny

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Yes, he put me on the antiviral med acyclovir 800 mg 5 times a day for 10 days. He also walked me to the lymphadema clinic and had my therapist look at it & mark me up with a marker to check for spreading. I have to go back to see her today.

At least with Sam waking up during the night I was able to keep up on the every 4 hour thing. I also took a pain pill before bed last night and was able to get some better rest.

It sucks, but hopefully will heal soon. I didn't see any spreading when I got up this morning thank goodness. He briefly talked about putting me on a daily preventative that I am sure we'll discuss more when I go for my next rituxan.

Geez, this stuff gets old. :)

Thank you all for the good thoughts!

miss maggie
Posts: 929
Joined: Mar 2010

Hi,

What a big mistake I made. Not too long ago, some of my friends went for the shingle vaccination. I thought I would wait until further info came out about the side effects for this vaccination. Almost a year later I decided, I will get the vaccination. I did research on the internet. I no longer have the option for this protection from shingles because of NHL. I regret it so much.

I am so sorry for your suffering. Hopefully someone on this site can help you get some relief.

DX 09/09 Extranodal marginal zone B cell NHL - remission Jan 2011

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

We can't get the vaccination because of the lymphoma? Wow. Doesn't seem right to me with our immune systems the way they are.

yesyes2
Posts: 465
Joined: Jul 2009

Maggie,
Can you tell us why you can't get the Shingles vaccine if you have had lymphoma? My GP has wanted me to get it and she knows I am in remission with lymphoma.
Thank,
Leslie

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Here's what info I found on Livestrong..It sounds as if the decision is made on a case by case basis. If anyone else has any more info, please post. Thanks, Kellie

Shingles Leukemia, AIDS or chemotherapy and radiation treatments are all conditions that act to suppress a patient's immune system. Poor immune system function interferes with a patient's ability to fight off infection. Patients with compromised immune systems who receive the shingles vaccine are in danger of developing shingles symptoms, such as skin rash or blistering. Consequently, the shingles vaccine should not be administered to patients who do not have healthy immune systems, warns Merck, the pharmaceutical company that distributes this vaccine.

Read more: http://www.livestrong.com/article/208130-what-are-the-dangers-of-shingles-vaccines/#ixzz1CGWrWjKm

miss maggie
Posts: 929
Joined: Mar 2010

Thanks for the info you posted. I am also pasting further info on the shingles vaccine. You will note it specifically mentions lymphoma and bone marrow.
-------------------------------------------------------------------------------------------

Some people should not get a shingles vaccine, however. Talk to your doctor before getting the shingles vaccine if you:

Have ever had an allergic reaction to a vaccination
Have a weakened immune system because of:
Any disease that affects the immune system
Treatment with drugs that affect the immune system
Cancer treatment (radiation or chemotherapy)
A history of cancer that affects the bone marrow or lymphatic system (leukemia or lymphoma)
A case of active, untreated tuberculosis
Are pregnant or think you may be pregnant. Women should not become pregnant for at least three months after getting the shot.

Maggie

miss maggie
Posts: 929
Joined: Mar 2010

Hi Leslie,I suppose by now you read the post from KC. That's exactly the information I found. I also apoke with my internist, and he agreed. No shingles vaccine for me. I will be seeing my oncologist in May 2011. I will ask her about the vaccine. Also, the warning from the drug company was scary. Actually a warning not to get the vaccine.

I would question your GP again, and make a copy of the warning from the drug company to show him. I think the best doctor to speak to would be the oncologist. I too am in remission. But, patients in remission sometimes have set backs and go out of remission.

Again, I am not a doctor. Maybe when I have time, I will call the drug company.

Love Maggie DX 09/09 Extrandal marginal zone B cell NHL remission Jan 2011. Note: Even though my oncologist informed me, she doesn't expect the NHL to return ( I had a rare form of NHL.) I would still be scared to get the shingles vaccine.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Steve got the shingles shot in November. It cost him $225.00 up front and our insurance didn't cover it. He said it was worth the money because he didn't want to ever get those darn things again. You can get them more than once you know. Steve was miserable while he had them and he only had a mild case on his neck, shoulder and upper chest. Our PCP went over all of the possible side affects with him and told Steve he was healthy enough to get the shot. My oldest sister..(age 65) got the shot 2 years ago and she hasn't had any problems so far from it....nor has Steve. Just sharing, not advocating for or against getting the shingles shot. Love...Sue FNHL-2-3a-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Hi Sue,

Thanks for the info. As I said, I will certainly ask the oncologist in May.

Love Maggie

yesyes2
Posts: 465
Joined: Jul 2009

Thank you KC and Maggie for the information. Actually even though I have had shingles twice, same with chicken pox, I had no intention of getting the shingles vaccine. At the time my PCP said something about the shot I felt it was just too new and too many unknowns. Now because of all the chemo I have had and my NHL I certainly would not have the shot. I also have a different PCP, she was just way too aggressive in her thinking for my taste.

Blessings,
Leslie

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