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Old 09-21-2009, 05:30 PM   #1
AlaskaAngel
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Question Breast cancer treatment, novel H1N1 2009 pandemic, and risk

I have a concern as a health care worker and consumer.
I have not seen much discussion anywhere in the breast cancer consciousness about the potential risks in regard to reduced immunity in this community as it relates to the novel H1N1 flu. I realize we still don't know how much of a threat this flu will actually be.

Should early stage breast cancer patients (the majority of whom are at low risk for recurrence of breast cancer if they do only surgery and perhaps radiation and possibly hormonal treatment, but who will be considered to be one of the group with "an underlying medical problem" if they do immunosuppressive treatment), be counseled about the risk of dying from the novel H1N1 2009 pandemic flu if they are considering chemotherapy? Especially early stage breast cancer patients who are borderline for doing chemotherapy, as well as those hormone receptor positive patients who would not have an underlying medical problem and would be at low risk for dying from the novel H1N1 2009 pandemic flu if they were to choose ovarian ablation and hormonal treatment instead of chemotherapy?

Given that those diagnosed with cancer now are the ones who undergo prolonged treatment that reduces immunity (i.e., an "underlying medical problem"), their risk for mortality by novel H1N1 could be high. Yet there is no significant public discussion about it in discussions with the medical providers responsible for this group of patients. The length of treatment/induced poor immunity indicates a need for planning farther in advance for these patients in regard to the novel H1N1 flu.

I realize that breast cancer affects primarily older adults. The majority of the confirmed novel 2009 H1N1 cases and the hospitalized cases have been very young, and it appears that those over 65 are least affected. However, it is not clear to me whether that age distinction holds true for mortality.

Here is a brief bit of info from the CDC on May 28:

"Next I want to go through a little bit of information about some clinical observations. And you've heard us talking about the hospitalizations and the idea that the majority of hospitalizations that we're seeing are occurring in people who have underlying health conditions, pregnancy or various underlying medical problems. This is what we see in hospitalizations with seasonal flu. And so we are seeing that hospitalizations are more often occurring among people with these underlying conditions. When we look at our deaths, we have information on 11 of the 12 deaths that have been reported to us so far. And it appears that 10 of those fatalities occurred in people who had an underlying condition that put them at greater risk for severe complications of influenza. Some conditions like asthma can make it harder for a person to fight off an influenza infection. And we're seeing that kind of pattern, that the more severe complications, hospitalizations or deaths, tend to be disproportionately in people with underlying conditions. Whereas the actual cases out there in the community are often in people with no underlying conditions at all. So we think these patterns suggest to us that it's important for people who have chronic health conditions, or people who are pregnant, to have special attention to warning signs to regarding when to seek care or receive medical treatment for a respiratory illness like influenza."

The logical question that arises is this: Since early stage breast cancer patients are not at high risk unless therapies are used that significantly lower their immunity, and since the vast majority of those patients are not likely to have breast cancer recurrence in the first place, shouldn't there be medical discussion happening now about the possible change in RISK vs BENEFIT to patients for any treatments that change their immunity status?

Please keep in mind that in 1918, such a large group of patients was not put at immunologic risk by the medical profession, and especially not put at risk for such a prolonged period leading into the fall season.

It seems to me that the summer 2009 ASCO meeting presented a geuine opportunity for the medical professionals who are most responsible for therapies that affect immunity to demonstrate their awareness and commitment to their patients through a well-thought-out, proactive presentation or discussion about this issue. I didn't see anything presented at that conference of people who prescribe treatment for breast cancer patients in regard to my question. How is this group of patients being monitored, and how long would it take for any trend to be recognized?"

In a different presentation by the CDC, this statement was made:

..."The vast majority of the fatalities that we hear of or that are officially reported to us do occur in people with underlying conditions. It's not 100%. It's more on the on order of three-fourths of them at this point." ....

I also found this rough estimate of the number of persons in the population at any time who are immunocompromised (AIDS, chemo, etc.):

"Immunocompromised status, either through cancer chemotherapy or other compromising conditions is about 13%."

Because I am not seeing any professional discussion about the risk of chemotherapy-caused immunosuppression in regard to the novel 2009 H1N1, it appears to me that oncology is proceeding as if the novel 2009 H1N1 flu and immunosuppression from chemotherapy are mutually exclusive conditions.

Again, my question is this:

Should early stage breast cancer patients (the majority of whom are at low risk for recurrence of breast cancer with only surgery and perhaps radiation and possibly hormonal treatment, but who will be considered to be one of the group with "an underlying medical problem" if they do immunosuppressive treatment), be adequately counseled about the risk of dying from the novel H1N1 2009 pandemic flu, if they are considering chemotherapy? Especially breast cancer patients who are borderline for doing chemotherapy, as well as those hormone receptor positive patients who would not have an underlying medical problem and would be at low risk for dying from the novel H1N1 2009 pandemic flu if they were to choose ovarian ablation and hormonal treatment?

How many are actually receiving this counseling as part of their risk assessment?
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Old 09-21-2009, 05:35 PM   #2
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Good post here, AA. Thank you.
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Old 09-21-2009, 06:44 PM   #3
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Well, something to think about FOR SURE!!! I am still debating on whether or not to get the H1N1 flu shot...not enough info yet... I always get the regular flu shot. XO Suzan
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Old 09-21-2009, 07:03 PM   #4
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Thanks, Bill and Suzan. This has always been one of the best places to ask tough questions.

Your question, Suzan, touches upon another aspect of the problem in that getting the injection is still something a lot of people haven't decided about -- and the more people who don't get it, the more exposure there is likely to be for breast cancer patients who are currently in treatment... There is a lack of information and discussion to help people figure out the best answers.

I know that for a newbie the whole subject of breast cancer and breast cancer treatment is so complicated that being newly diagnosed is the hardest time of all to ask the kind of question I am asking. Not much about any of it makes sense for them. But it is a very honest, logical, and important question to consider.

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Old 09-21-2009, 07:15 PM   #5
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

AA the American Cancer Society has the following on their site...

http://www.cancer.org/docroot/SPC/co..._Swine_Flu.asp

http://breastcancer.about.com/b/2009...-swine-flu.htm

http://www.business-standard.com/ind...dindia/370773/

When I visit my onc. for my 4 month check up I will ask my him what information is being given to the patients.
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Old 09-21-2009, 07:18 PM   #6
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

I would think the oncologists of those who are undergoing treatment will be the ones to answer these questions. As much as I gripe about my doctor sometimes, I did ask about it in 2007 while undergoing chemo and then was given the flu shot. It did not seem to have caused any problems.
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Old 09-21-2009, 07:33 PM   #7
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Hi Jean and Jackie07,

Thanks for the links. As noted in the third link Jean posted:

"Persons having underlying co-morbid conditions like diabetes, cancer, liver disease or any other chronic disease including pregnant women and children are at high risk."

It is interesting that even long-term survivors here like ourselves do not have the answer, as the flu surfaced early last spring and we still don't have any good or clear answer for people here even though there are lots of people here who have gone through treatment, are going through treatment, and are considering treatment, with lots of oncologists to advise us all.

There has been no open discussion even on the forums here indicating that oncs have any recommendations about it for us -- especially in regard to early stage bc where the recommended treatment is least definite for many.

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Old 09-22-2009, 10:14 AM   #8
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

if i can i will get the h1n1 shot because i have my 1 year old grandson at home and my daughter-in-law is pregnant. don't want to take any chances.
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Old 09-22-2009, 03:06 PM   #9
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

I found this today about patients in active chemo (which I presume includes Tykerb and Herceptin, which are chemos)

Chemotherapy can produce acute and profound immunosuppression in cancer patients and studies suggest that 21%-33% of cancer patients may be infected with influenza when admitted to a hospital with respiratory symptoms during a flu epidemic. Again, timing of flu vaccination may be crucial in cancer patients. The response to flu vaccination might be best between chemotherapy cycles or more than 7 days before chemotherapy starts.
“Patients receiving chemotherapy for cancer appear to be at heightened risk for influenza-related complications,” Dr. Kunisaki said. “They also appear less likely to respond to influenza vaccine, but nevertheless, a fair proportion still responds. No formal guidelines exist for influenza vaccination of patients receiving chemotherapy, but the data suggest timing vaccination to either more than two weeks before receiving chemotherapy or between chemotherapy cycles.”
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-22-2009, 03:08 PM   #10
hutchibk
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

At this point, I plan to get the seasonal flu shot as always, and I am planning to NOT get the H1N1. That decision could change as we learn more about it, but I am not a fan so far. I would rather wear a mask for 4 months...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-22-2009, 03:25 PM   #11
AlaskaAngel
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Thanks for that info for everyone to consider, Hutchibk. The vaccinations aren't here yet for it, so I wonder what oncs have been and are advising as the flu pandemic is continuing, and what the numbers for the 2009 bc group will look like as time goes by, and what is being recommended currently to those with mets -- and why we seem to have such a vacuum here in terms of anyone who has been included in receiving that counseling.

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Old 09-23-2009, 01:19 PM   #12
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Although information provided continues to irritatingly avoid including those like us, we are at higher risk just like these other groups are. Ask your doctor, but we probably should avoid getting the nasal spray / live attenuated virus when it is available, and wait for the vaccination:

http://h1n1.nejm.org/?p=890
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Old 09-23-2009, 04:35 PM   #13
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Apparently hand washing not preventative....more an airborne issue.
http://www.newsweek.com/id/215435
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Old 09-24-2009, 03:28 PM   #14
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

"No formal guidelines exist for influenza vaccination of patients receiving chemotherapy"

Wow. Pathetic.

Mom was in for labs and another delay on Navelbine tx.
Thought to ask about regular flu shot but was told her doc doesn't like to give flu shots during active treatment period.
So...doesn't like Neupogen, against flu shots.
She has COPD and apparently has a battle with wbc. I guess it's gonna be a stay at home flu season.
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Old 09-25-2009, 01:10 PM   #15
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

Seasonal flu shot may increase H1N1 risk

http://www.cbc.ca/health/story/2009/...-seasonal.html
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Old 09-25-2009, 08:33 PM   #16
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

When I visited with my onc in early September, I asked if he was recommending both the seasonal flu shot and H1N1 flu shot, and he said "Yes." The conversation pretty much ended there. I asked if we knew enough about the safety of the H1N1 flu shot yet, and he said more on that will be forth coming, but as of now he was recommending both shots.

In regards to wearing the masks for prevention, I've heard the "experts" say that the masks are not recommended for prevention, but they should be worn by the population of people who are not feeling well or do have H1N1, as they will be less apt to contaminate those around them.

This is a very timely topic, AA. Just tonight I was visiting with someone about cancer patients and their reduced immunity. I have to admit I have not looked into this topic, but have wondered about it for quite a long time. I can't believe I have not discussed that issue with my onc, but I have not! Does having had chemo reduce your immunity for life? Or is the blood restored to "pre-chemo days" over time? Anyone know?
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Old 09-28-2009, 10:39 PM   #17
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A Response from Oncolink

http://www.oncolink.org/blogs/index.php/feed/
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Old 09-29-2009, 12:41 AM   #18
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Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

I have been wondering about this issue.

My understanding is that when a person first falls ill that is the best time for the culture for this flu. I had not heard about large scale outbreaks in Russia, but know they are monitoring as best they can. The paper had something about a school outbreak in Murmansk (far from where I was).

And as each person walked out the door of the plane they were scanned by a hand held device for abnormal temperature. This was in Moscow,Russia, not in any intermediate stop. They also had a health form to fill out.

It seems that what we caught over there is more like a bad upper/lower respiratory bug like we have had in the past. Just got worse due to us traveling and not able to rest or treat normally as at home.
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-30-2009, 12:05 PM   #19
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Oncolink's response regarding the pneumonia vaccination for cancer patients

http://www.oncolink.org/blogs/index....ines/#comments
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Old 10-27-2009, 10:43 AM   #20
Vic
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H1N1? It's Oct. Re: Breast cancer treatment, novel H1N1 2009 pandemic, and risk

After reading all these wonderful postings, I'm wondering if any of you have decided to get the H1N1 flu shot along with your regular flu shot? Some of you were on the fence. Any changes in your decision?

I had my regular one in Sept. and my onc. recommended that I also get the H1N1, even though I've been out of treatment, except for my Zometa twice a year.

While this flu seems to target young children, teens and young adults, having had chemotherapy does compromise our immune systems and put us in a special category. Any thoughts? I know they say the vaccine is safe, but there are a lot of opinions out there contaminating the airwaves.

Vicki
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Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
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Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
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Zometa every 6 months for osteopenia, started April 09
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