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All TopicsForum: Chemotherapy - Before, During, and After → Topic: Shingles >:-(

Topic: Shingles >:-(

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Apr 26, 2011 01:58PM

lago wrote:

Wasn't sure where to post this since lots of rads cistas are getting them too. Hope they see this.

It seems lots of us have been getting them during/after treatment but no one talks about it except to say I got it or you got it get to the doctor.

I figured out I had this past Saturday and got antivirals from my GP. I thought I caught it early since I noticed it at noon and figured out 6 hours later that it must be shingles but it still appears to be getting worse, more blistery and spreading a little.

Anyone out there have experience with this? How long does it take to start getting better with meds? Anyone still in treatment when the got this? I'm hoping I won't have to postpone my Herceptin only appointment next Tuesday.

I'm thinking I might have to canceled the gyno appointment next week too. Already cancelled the colonoscopy for this week but have no idea when to reschedule since I also have exchange surgery coming up at the end of May.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 1, 2011 07:36AM lago wrote:

Thanks Claire, yes it's finally crusting over but the pain has increased. I've been popping Ibuprofen. It helps a little. I even hurt in places that don't have breakouts.

People get the shot if you can! If this can be avoided, or at least minimized then do it.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 1, 2011 07:40AM LuvRVing wrote:

I got my vaccine at the local Walgreen's walk-in clinic. The live virus must be kept frozen, I think, until just before administering or it will die.  I paid my $15 copay for the clinic and my insurance covered the cost of the vaccine at 100%.  I was told that if they didn't cover it, the cost would be approximately $275.  The administering of the vaccine is covered under Medicare rules which complicates things.  Even though my PCP could administer the flu and pneumonia vaccines, she couldn't give me the shingles vaccine.  Seems sort of stupid, and maybe this will change if they've lowered the recommended age to 50. 

In any case, if I were a newly-diagnosed breast cancer patient, I would BEG for the vaccine before beginning any treatment.  It may be only 50-60% effective, but that's no worse than most of the other drugs we BC ladies are willing to accept.

My mom and her best friend suffered with shingles a couple of years ago.  Her friend got it in her ear canal and suffered with vertigo for months, and was left with a permanent hearing loss.  My mom had it for 3 or 4 months, and it was painful. 

It's nothing to mess around with, and if you can get the vaccine, I highly advise doing so.

Michelle

Michelle - read my blog at www.mch-breastcancer.blogspot.com - Be kind to one another! Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2- Dx 3/29/2011, IDC, 4cm, Stage IIIB, Grade 3, 4/21 nodes, ER-/PR-, HER2- Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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May 1, 2011 07:53AM Marybe wrote:

  I am so sorry you have to deal with Lago, along with all the others who have posted on here they they have had outbreaks.  I got the vaccine as soon as I heard it was available....I was not yet 60, but I have a good friend who gets outbreaks quite often (think she has them at least every year and it's been going on for a long time) and after hearing her talking about how painful they are and then having had a patient in who told me it was the worst pain she had ever had, I decided I don't care if the insurance pays for it or not, I am NOT going to deal with that if I can help it.  It makes sense that someone with a compromised immune system would get them and chemo certainly does that to us, plus stress can bring them on and God knows BC causes enough of that.  I hope those of you who are having to deal with this find relief soon and that the attack doen't last too long and for those of you who still have the opportunity to avoid them, go get that vaccine ASAP. I know of someone who went for the vaccine after having shingles, but don't know if that lessens the symptoms of it if did her any good or not.   

Marybe Be you own advocate and keep on your toes. I went from no stage (1990) to Stage lV while under an onco's supervision. Dx 4/1998, IDC, Stage IV, 0/19 nodes, mets, ER+/PR+
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May 1, 2011 08:08AM duckyb1 wrote:

It is my understanding that getting the vaccine after it happens to you, will not help with your present problem..................whether it helps down the road I'm not sure.............but I do agree with Marybe.............even if your insurance doesnt' cover or charge you a co-pay, get the vaccine........it is worth every penny.............just the peace of mind makes the difference.

I'm just surprised how the co-pays vary around the country, and among insurance companies.....although he is another scenerio...............

I am going to see a LE specialist tomorrow (Monday), and my RO said "her visit may not be covered by your insurance (Aetna)..........So I called, and my RO was right..........Then I called the LE specialist office (located right in the Rads dept), and they did tell me exactly this........................

The only way her visit is covered is by "standard medicare".............her visits are not covered by supplemental insurance...............

Ok, now this doesn't make sense to me.........or I'm just plain stupid.....I understand we choose to get supplemental insurance, but in the case where supplemental insurance doesn't cover a therapist who is recommended by your Rads Dr.................doesn't the fact that every senior citizen contributes $96.00 each month from their SS check to the Gov medicare count for something.............maybe I'm not seeing this clearly, but if we are paying $96.00 every month from our check, where does it go, and what is it for......

If you choose to not carry supplemental insurance your medical bills would be very high since medicare doesn't take care of most of it...........or am I missing something here..........Either way.........the therapist said she will do the first visit gratis because I am a cancer patient, and then if need be she will recommend another specialist who will be covered by my company.............Problem solved, I just don't get  the non-coverage with the one the recommended.

Ducky Dx 2/15/2011, IDC, 1cm, Stage I, Grade 1, 0/8 nodes, ER+/PR+, HER2- Radiation Therapy 4/24/2011 Whole-breast: Breast
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May 1, 2011 08:43AM painterly wrote:

Thanks Ladies.

That's such rotten luck to get shingles when going through chemo. They should tell us the possible SE's. I had a terrible rash on the 1st round and I was told that it was acne; they gave me a cortisone to use but warned me to use it sparingly as it would inter-act with the chemo. I was so afraid to have an inter-action that I did only use it sparingly. Consequently, I had this darn acne for over a year before it finally disappeared. Am wondering now if it was shingles.

I had a powerful drug interaction from the nupogen injections (to replace white  blood cells) that it felt  as though someone was violently kicking me in the back and I fell off the couch in pain.  So this is the reason why I was afraid to use the cortisone. Then I got another interaction from the nupogen that my body started making white blood cells like crazy and the onc. phoned me to quit using the nupogen. I sure hope we don't have to go through this crap again. The public is so complacent about breast cancer treatment that they think it is no big deal now with really excellent treatments and that it is well and truly under control and no one dies from it blah blah blah.

Better end here before I tie my knickers into a huge knot.LOL

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May 1, 2011 08:51AM duckyb1 wrote:

You are so right............just the ridiculous comments that were made to me when people found out about my diagnosis proved to me that people do truely belive that BC is no longer a serious problem in the country...........

They should come to this website and read some of the posts young women with children...........older women who can't handle the treatments, but have to get them, the women on chemo, the women with the Rad burns so bad, and not much helps.............the fatigue you get from most of the treatments they give you......................Now let us discuss the Stage 1V women with a grim fruture

Don't tell me BC is looking up.................just because less women are dying of the disease, by no means are we near a cure................for every women who loses her battle there is another one to jump in her spot with a new diagnosis.................for every women with "stage 1, there are 10 Stage 1V..................Let's take this disease serious...............lets find a vaccine, not another poison to pump into us to keep us alive.................FIND A DAMN CURE, AND NOW.  SPEND THE MONEY ON WHAT  IT NEEDS TO BE SPENT ON...........A VACCINE TO STOP THE DISEASE, Yell

Ducky Dx 2/15/2011, IDC, 1cm, Stage I, Grade 1, 0/8 nodes, ER+/PR+, HER2- Radiation Therapy 4/24/2011 Whole-breast: Breast
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May 1, 2011 08:52AM lago wrote:

painterly you'd know if you had shingles. Acne does not hurt like this nor does it look like this. The break out doesn't last for years, usually 2-4 months to clear up. I mean this stuff really burns, you'd know if you had it.

I knew it was a rash, not acne when I first saw it.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 1, 2011 09:27AM painterly wrote:

Thanks Lago,

Hope you get over this nasty period quickly.

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May 1, 2011 09:44AM 208sandy wrote:

The cost for the vaccine is $80 here in Ontario (Burlington) - there is still a waiting list for it - my doctor is trying to get it for me and has been since before Christmas - I still want to know why no one ever told me to get the vaccine while I was undergoing treatment and afterwards - I only knew about it because our friend and my dh both had shingles before they passed away (they were both long time diabetics thus compromised immune systems) - my PCP is the one trying to get me the vaccine - nothing ever said by my onc or her nurse.

 Sandy

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May 1, 2011 09:45AM , edited May 1, 2011 09:45AM by cp418

I had Shingles last spring and also had Chicken Pox as a child.  I was given some anti-viral pills plus topical cream called Zovirax.  First 2 weeks were the worse for me and only extra strength Excedrin helped with muscle and nerve pain.  It started in center of my lower back like a huge bug bite and then wrapped around to the front across my stomach - - all on left side.  Wishing you a speedy recovery.  It takes a while for sores to resolve but by week 3 much improvement regarding pain. 

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May 1, 2011 11:29AM lago wrote:

cp418 I'm identical to you, right down to the left side. Glad to know that I just have 1 more week of hell. It is really drying up today.

BTW I don't think they will give you the vaccine right after you've had chemo. I'm not sure if they can even give it to you right before either. The vaccine, I do believe has some of the live virus in it.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 1, 2011 12:34PM FireKracker wrote:

I got the shot on friday.cost me 7 bucks.in jan.my dr gave me a script to get the shot.i was doing rads.i told her i wasnt gonna do them and changed my mind soo i couldnt get the shot.had to wait for 2 mos after the rads.last week i was ready to go.no one had it.now i have this script to be admin.by dr.no one has it.merk the manufacturer is on backorder till july.i cant wait till july i need it now.i called hosp,health dept and many others until finally someone told me to call rite-aid.I went to Pa to CVS thy dont even carry it.the rite aid pharm gave it to me.there is restrictions afterwards.he gave me a sheet of paper.for 2 weeks stay away from pregnant women,small children and people with compromised imminue systems.thats my entire family.ill be home alone this mothers day.thanks a lot bc.ANOTHER GIFT.

yes ducky we need to all pray for the vacine.period.i do every day.

And you poor Lago.im sooo so sorry.as soon as i scabbed i creamed very lightly.remember i had  it on the face.get better soon.hugggggggggggsK

Focktober!!!!Pink stinks!!!!
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May 1, 2011 01:31PM ruthbru wrote:

Here is a recent newspaper column about shingles by Dr. Gott. He apparently wrote a column in March with recommendations on who should not receive the vaccine. So here are his readers questions from that column and his response:

DEAR DR. GOTT: I just took the shingles vaccine at a local drugstore. I filled out papers but nowhere did it mention that anyone who had a history of cancer should not take the vaccine. Please advise.

DEAR DR. GOTT: In your recent column, you said that the shingles vaccine should not be given to former cancer patients. I am in remission from large B cell non-Hodgkin's lymphoma. I have Wegener's granulomatosis, which although in remission, is still there. The Wegener's is the reason that a shingles vaccine is recommended. I will be having CD19 level blood testing before any vaccination, but with my history, should I still have the vaccine?

DEAR DR. GOTT: I read your recent article regarding the shingles vaccine with much interest. My doctor recommended the vaccine for me; however, I am reluctant to get it. My concern is that I understand the vaccine is formulated with live virus and my white blood count is below normal. Neither my doctor nor a pharmacist was able to comment on this.

DEAR DR. GOTT: I read your article that the shingles vaccine is not right for everyone. I am 65 now and I had ovarian cancer 25 years ago with chemotherapy on weekends once a month for a year. Your article said I shouldn't have the vaccine because I had cancer. Does this hold true for me even though I had cancer so long ago? Also, I can't remember if I had chickenpox. Please advise.

DEAR DR. GOTT: I am a white male, age 58-1/2. I had chickenpox as a child and suffered with a classic case of shingles in February 2010. I received a prescription at a cost of about $300 for 21 pills, seven days' worth, that helped tremendously.

I asked my doctor at that time about the vaccine, and he said he had not studied the vaccine enough yet, as it was new in February 2010. Could you please enlighten me about new information regarding this vaccine or where to go for new information about it because I don't want the discomfort again?

DEAR DR. GOTT: I read your column on the shingles vaccine with interest. However, I am wondering why you stated that those undergoing radiation for cancer or with a history of cancer should not have it.

In 2009, I was diagnosed with breast cancer and underwent surgery, chemotherapy and radiation. I also turned 60 that year and asked my oncologist about having the shingles vaccine. He said I could have it as long as I waited one month after I finished chemotherapy. I was undergoing radiation at the time when I had the vaccine and seem to have no issues as a result.

Have I done myself harm or is the vaccine or effective? Also, if the vaccine only lasts six years, should I have another when I am 66 or avoid it owing to my cancer history?

DEAR READERS: Thank you all for writing. When I wrote this article, I acquired the information from reputable sources to include the Centers for Disease Control and Prevention that specifically indicates people with a weakened immune system because of HIV/AIDS or another disease that affects the immune system, treatment with drugs that affect the immune system, cancer treatment such as radiation or chemotherapy, a history of cancer affecting the bone marrow or lymphatic system such as leukemia or lymphoma, and women who are or might be pregnant should not get the vaccine.

The U.S. Food and Drug Administration mirrors this and states conditions such as cancer of the lymph, bone or blood and those with a weakened immune system caused by treatments such as radiation should not be immunized.

Drugs.com indicates if a person has leukemia or lymphoma (or other cancer affecting bone marrow) or a weakened immune system caused by disease or by receiving medication such as steroids or chemotherapy, they should not take the vaccine.

The Mayo Clinic indicates the vaccine isn't recommended if a person has a weakened immune system due to HIV/AIDs, lymphoma or leukemia or is receiving immune system-suppressing drugs such as steroids, radiation or chemotherapy and more.

The website www.Zostavax.com indicates that patients should not get the vaccine if they have a weakened immune system.

MedlinePlus indicates a person who has a weakened immune system because of treatment with drugs that affect the immune system such as prolonged use of high-dose steroids, cancer treatment such as radiation or chemotherapy, cancer affecting the bone marrow or lymphatic system such as leukemia or lymphoma should not get the vaccine.

Therefore, I stand by my original March statement that indicated there are some people who should not receive the vaccine. However, that said, I defer to each reader's oncologist, hematologist or other specialists who may have a different view on the subject. Thank you all for writing.

<!-- -->

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, , Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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May 1, 2011 02:12PM FireKracker wrote:

Very interesting article.As always there is always should I shouldnt i....I think its up to your dr.My drs RO,BS,onco and internist all said 2 mos after the rads.take it.I think once again this is again very individual.After what I went throu with the shingles I would not even hesitate to do it again.I never took the flu or pneumonia shot in my life.I did this year.Everything is CHANCE.

Thanks for posting all that info.

Focktober!!!!Pink stinks!!!!
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May 1, 2011 02:14PM ruthbru wrote:

I'm keeping the article and bringing it along to my next doctor's appointment as a 'topic for conversation'.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, , Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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May 1, 2011 02:18PM Claire_in_Seattle wrote:

I remember the staff giving me the injection had a "not within six months" policy which applied to chemo and radiation.  I am well beyond that.

Lago.....sorry you are still feeling under the weather, but I am taking crusting over as progress.

Feel better soon. - Claire

Completed all treatment (AC +T, lumpectomy, radiation and 5 years of AIs - anastrazole). Now celebrating every single day for the wonderful life I have been granted. Dx 8/2009, IDC, Left, 2cm, Stage IIB, Grade 3, 1/21 nodes, ER+/PR-, HER2- (FISH)
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May 5, 2011 07:04PM Letlet wrote:

lago how are you doing now?

Dx 8/27/2010, IDC, 3cm, Stage IIIA, Grade 3, 6/23 nodes, ER-/PR+, HER2+
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May 5, 2011 07:44PM lago wrote:

Rough 2 days. I actually was taking narcotics most of today and was still in pain but I think I might have peaked. Just taking Ibuprofen now and feel better than I did this afternoon. Hopefully that means it's going to get better now. The the blisters & rash are really clearing up fast now too.

Bad news is my exchange surgery scheduled for May 27th had to be pushed up to June 24th. Hopefully it won't be pushed up any further. Thanks for asking.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 9, 2011 01:53PM FireKracker wrote:

Thinkin of you Lago....feeling your pain....your almost there.prayin for you.hugggggs K

Focktober!!!!Pink stinks!!!!
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May 9, 2011 02:35PM lago wrote:

Thanks grannydukes. Getting better but I'm still not fully function… My place really needs to be vacuumed. I could do if I wanted to do it in the naked. Clothing rubbing on my rash still hurts. Hmmm maybe I could start a trend. Naked vacuuming.

http://houston.culturemap.com/site_media/uploads/photos/2010-06-08/vacuuming_nude_by_Hazel_Medlyn.263w_350h.jpg

Note: I do not have blond hair, nor is it that length, nor do I have that many toenails or  nipples. And I never had cleavage.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 9, 2011 02:38PM Leah_S wrote:

So, lago, you're telling us this is not a self-portrait?

Glad you're a little better and hope you're completely better soon.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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May 9, 2011 02:50PM lago wrote:

Actually yes, not a self portrait. My body looks nothing like that except for maybe the thighs Wink
DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 9, 2011 03:42PM FireKracker wrote:

dont clean your house.not now.stay in the naked state.be comfortable.this too shall pass my sista.take good care of yourself now.sleep and rest as much as you can.Dont forget when this is all over get the shot.you can get it again....and you dont ever want that again...sending you some gentle hugggggggggs K

Focktober!!!!Pink stinks!!!!
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May 18, 2011 08:53PM lago wrote:

What did you guys do when the itching started?

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 18, 2011 10:52PM hdangelbaby wrote:

what if you never had the chicken pox??

are you still at high risk?

staying cancer free is my new full time job!! Dx 10/14/2010, IDC, 2cm, Stage II, 2/9 nodes, ER+/PR+, HER2-
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May 19, 2011 06:37AM lago wrote:

If you've never had chicken pox or the vaccine then you don't have the virus in your system therefore you can NOT get shingles. BUT you need to stay away from people with shingles because if they pass the virus on to you, you will get chicken pox.

If you have had chicken pox or the vaccine (the vaccine is a live chicken pox) then you can get shingles. The shingles vaccine is only approved for people 50 and over but not all insurances will pay for it. I think it's around $250. To be honest I would fork up the $250. You don't want to get this. Granted once you get it it's rare to get it again, so they say.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 20, 2011 03:23AM TokyoSing wrote:

My question is this:  if you had shingles, can you get it again?  

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May 20, 2011 07:57AM lago wrote:

Yes but typically you don't, or won't for a few more decades. I've also been told if you do get it again it won't be a severe but I don't know how true that is.

Do note that the vaccine has now been approved for people age 50 and older as of this March in the US.

other source info:
linky 1 
linky 2 
linky 3  

---------------------------------------------

Still hoping someone can chime in with some remedy for the itching. Anyone? The over the counter hydrocortisone doesn't work.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 20, 2011 09:25AM Beeb75 wrote:

For itching:

* soak in an oatmeal bath (grind oatmeal to a powder, mix with water, or buy it)

* cortisone cream or calamine lotion?

Maybe your docs have some ideas? Mine wouldn't let me put anything on it...though I think they might have suggested Benadryl, but please check with a doc on that, I'm not sure.... 

Sorry you're itchy! They'll be gone soon. 

Dx 7/2010, IDC, 2cm, Stage IIB, Grade 3, 1/20 nodes, ER+/PR+, HER2-
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May 20, 2011 09:32AM lago wrote:

Thanks Beeb. The itching seems to be a real issue at night when I'm trying to sleep. Cortisone cream doesn't work. I don't do Benadryl unless forced to because it can make me drowsy… but if this continues I might ask my doc about Claritin. I believe that's the one that doesn't space me out.

They are getting much better. It's been 4 weeks now. I think it will be another 2 weeks before they totally disappear. I assume in a week the burn will be gone… and hopefully the itch too. Burning is very tolerable right now anyway. Actually prefer that to the itch.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+

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