No Surrender Breast Cancer Foundation by Survivor ~ for Survivor Message Forum

Meow Bow Wow - H1N1!

nosurrender — Sat, 07 Nov 2009 04:04:47 GMT

Your kitty and your pup can get the swine flu!
http://www.reuters.com/article/europeCrisis/idUSN06205376

Abraxane, Gemzar and Avastin

bottkota — Fri, 06 Nov 2009 20:27:44 GMT

This is the chemo regimine I will be starting next week. This is a clinical trial out of the Mayo clinic. Scared of what the side effects will be, if they will be tolerable. this is a 21 day cycle. Day 1 all three drugs, Day 8 all but avastin, week 3 rest. then start the cycle over again. mets to sternum and surrounding lymph nodes. triple negative again. ugh, why couldn't it have come back with some hormone receptors this time??? am hoping this chemo will knock it out. my oncologist is not concerned about the liver lesions as they are very small. any advice for me? what can i expect? will this do the trick? and put me back in NED???

Forum: ~CLUB METS~

Hip Joint and Arimidex

SoCalLisa — Wed, 04 Nov 2009 19:53:47 GMT

Hi Edge..I just returned home from seeing my oncologist . I told him I have
hip pain two years after I finished up with arimidex...he suggested I have
an MRI because he has seen problems in the hip joint occurring in
connection to arimidex....do you have any idea what this is all about?

Forum: THE CUTTING EDGE

Concerns about new diagnosis

bottkota — Wed, 04 Nov 2009 00:53:08 GMT

hello all, was sent here by a friend from the breastcancer.org website. a little background for you. April '05 at the age of 30 I was diagnosed with stage 2 breast cancer. 2cm, no node involvement, bilateral mastectomy, AC and taxol treatments, triple neg (I really hate that word now). fast forward to this year. i have been having pain on my left side, that radiated down my arm which started in the summer of '08. nobody even me was concerned about it. well pain started to get a lot worse in September and the first part of october, i put in a call to my oncologist. He in turn ordered a bone scan. that showed something on my sternum. a week later we went in and had a PET scan done and the sternum and surrounding lymph nodes "lit" up. had a ct scan done to figure out if the spot could be biopsied. biospy was done last wednesday the 28th of october. got the call yesterday that the cancer has come back and it is in my bones. there are no other hot spots on my bones except my sternum area. but was no told about some liver abnormalities. until the day before my biopsy when they were deciding where to biopsy, my liver or my lung or if they would be able to do the sternum biopsy. well they were able to do the sternum. the radiologist said the lesion on my liver was small and he was not concerned about that. according to what my onc.'s nurse read from the report is that there are 4 hypo-plastiy (sp?) on my liver. small. sutle on the PET scan but showed up on the ct scan of my chest. should i be concerned about these abnormalities? i am meeting with my oncologist tomorrow afternoon to talk treatment options and what route would be best for me. i have read and heard that if your cancer is to come back it is best to come back in your bones, is that true? has anyone thought about altering their diet along with chemo to combat this nasty disease?????? any advice, thoughts, help, anything to ease my mind. thought after 4 1/2 years I would be free and clear. guess not. guess i need to fight this with all i got again. thanks for reading and letting me vent!

Forum: ~CLUB METS~

surgery tomorrow (11/4)

MicheleS — Tue, 03 Nov 2009 14:21:11 GMT

Having the prophy tomorrow. Getting nervous but also glad to get this past me!

I'm the 1st surgery of the day so if you are the praying type... I'll take 'em!

Michele

Forum: THE WAITING ROOM

Quandry with skin met...Edge can you help?

wayover20 — Mon, 02 Nov 2009 17:50:11 GMT

I'm triple neg rt mastectomy in 2007, mediastinal reoccurrenc in Aug 08--rads successful. Skin mets in Nov 08, bone mets sept 09. Today will be starting Xeloda after being on abraxane/avastin since nov 08.

There are about 10 skin mets on right chest/abdomen that are still "closed". The only one opened is on my left breast and is quarter sized with a scab that oozes watery//bloody stuff. No itching, no real discomfort.

Question/concern: That left breast was previously radiated back in 2004 after a lumpectomy for very small DCIS. Well now with that skin met (sore) there, it has made the breast tissue firm to touch. Should I be concerned that that breast has cancer IN it, not just on the skin??? Should I see the breast surgeon? Not sure what to do and the dermatologist was no help and onc says just try the xeloda.

I guess I'm thinking if that breast is now cancerous, should it be removed or is that crazy??

Pat

Forum: ~CLUB METS~

All Soul's Day

nosurrender — Sun, 01 Nov 2009 21:36:27 GMT

Lord, bless all the beautiful women we have lost to this disease.
We miss them and embrace their memory in our hearts.
Amen.

Forum: PRAYER, INSPIRATION & FAITH

How You Can Help Us Grow

nosurrender — Sun, 01 Nov 2009 21:01:22 GMT

Recently, we have added a button that takes you to a donation page to help support our website, message forum and the new programs we have launched. As a fellow survivor, I know how hard it is to make ends meet. We have mountains of medical bills, co-pays, drug costs and basically a lot of catching up to do financially after our lives were turned upside down by this wretched disease.

I understand that many of you are not financially able to support the foundation, and I value your support in other ways, like the way you welcome newbies, help a newly diagnosed mets-sister, and basically brighten everyones day with your words. But I have a suggestion, if you have friends or your employer is in a position to support the foundation, it can make a huge difference.

You can direct them to the main website and they can read about all we do. If they want a formal proposal, I can provide them with all the material they need.

When a person makes a donation on our new donation page, there is a link that you can click called tell a friend and it sends your friend/boss/Aunt Tilly a note that says, I just donated to NSBCF and wanted to ask you to, too!

We are growing and more and more people are reaching out to us. This is what we are raising money for:

Our Website and Forum
The main website was designed for a woman who needs to learn everything she can about her disease so she can make the best medical decisions for her. She learns about her cancer, how to read her path report, and learns her options. These options include surgical and reconstruction options, chemotherapy options, hormonal choices, etc. Then she can learn about how to cope with the side effects of treatment and all the little details her doctor doesnt tell her about. But then we go one step further, we offer our Support Forum.

You wonderful women have made this the warmest place on the internet. Anyone can ask any question and we gather around her and help her with the best answer we know, offer our own experience, and then if that isnt enough, Constantine comes in as the icing on the cake. How cool is our Message Forum!?

We need money to make the site better and the forum better. We need to reach more women. Part of that will be educational pamphlets that will be in local doctors offices directing women to our site and forum.

The Before Forty Initiative
I dont have to tell you about all the precious angels we have lost because they were diagnosed too late. Following the ACSs gold standard of getting your first mammo at age forty is deadly advice. Especially if you are African American or carry the BRCA gene. We want to change this forever. We are dedicated to getting the word out to all young women to get her first mammo by 35 and if she is African American or from a high risk group, she should be scanned at 30.

It doesnt stop there. We all know that mammos dont always pick up abnormalities when a woman is young because they have dense breasts. We want to change insurance companies coverage plans so they automatically cover breast ultra sounds and breast MRIs, particularly if there is a suspicious finding is present.

Whats more, we want to get the word out to every single woman on this planet to never, ever watch and wait. If you have a TNBC and you watch and wait for it to grow for six months, it could spread to your nodes and other organs.

I am the perfect example of both parts of this program. My first cancer was only found because I had Dr. Belt and Suspenders, who insisted I get a baseline at 35. I got mammos every year after that and at 39 they saw a spot that had not been there before. It was very hard to find because it was at the chest wall. If I had waited until 40, the scan would have read as normal tissue. I had an extremely aggressive TNBC tumor. Can you imagine if I had not found it when I did? Now look at my second cancer. Many of you were around when that happened. Remember I knew there was a lump. I was told it was the hematoma healing. I was told to watch and wait. I was put off because they said a biopsy would create more scarring in my breast. By the time I finally got that cancer diagnosed, the tumor was 2.5 centimeters and I had 4 positive nodes with extra nodal extension. I do not want anyone to ever have that happen to them.

We also need to stress the importance of in between time diligence. If a woman has a clear mammo, she should not believe that she doesn't have to think about it again until next year. Until we can find better diagnostics, women need to know, mammo or no mammo, BSE, EVERY MONTH, to make sure nothing pops up between routine screening.

To get the Before Forty Initiative on the map, we have to raise money for:
Publicity, public service announcements, educational pamphlets, lobbying the government, lobbying insurance companies... basically forming a No Surrender Army to save womens lives. This army has equipment too. We are raising money for our own mobile mammography buses so we can directly get the message out to young, African American women.

The Sister Corps
Those of you who are Team Leaders are going to need a lot of supplies and that also includes all the info that we can provide information about our site, our programs and what the Sister Corps can do locally.

The No Surrender Breast Cancer Foundation Research Grant
(AKA our baby)
We know how badly we want to end breast cancer. We dont want to lick any more yogurt caps. We want to be directly involved in the research that is actually finding a cure! And if not a cure, better therapy, targeted treatments, better diagnostics, and gene therapy. Every year we will select ten of the most promising research and then present them to our Medical Advisory Board and narrow the choices to three. And from the three, YOU will vote on what YOU want to support. Then, we will make a grant to that researcher and his/her project, and be active in ending this disease forever.

So you can see why we need money! We are actively writing grants and approaching corporate America for help. If you have someone who would like to help us become all we can be- so we can help women all over the world, please tell them about us.

I am working very hard to make this what you want it to be. I have listened to your wishes, cried with you when we lost a sister, and I know, together, we will change things, forever.

Love,
g

Click HERE to go to our Support page

Forum: PLEASE SUPPORT OUR FOUNDATION

Pink Hell Month Ends

nosurrender — Sat, 31 Oct 2009 16:15:51 GMT

Saturday, October 31, 2009

Pink and Black

It took me a long time, but I finally figured out why October was chosen for "breast cancer awareness" month. There is nothing pink in October - things are turning gold and brown and the air turns cold. If a pink month was to be picked, May, would have fit the bill.

But, just like October, there is nothing pink about breast cancer either. It isn't frilly, pretty, delicate or particularly feminine. So why is October "our" month?

Halloween.

All hallow's eve. The night before All Soul's Day, a day honoring the dead. Now I get it.

In the 31 days of this year's pink hell month, I personally know of five women who have died from breast cancer. Five women who won't be answering the door tonight handing out treats. Five women who won't be fixing costumes and drawing cat whiskers on their child's face. Five women who were given a pink ribbon last October to make sure they were "aware" of breast cancer. Trust me. They didn't need reminding. The families they left behind won't ever forget.

This year, as you hand out your miniature sized Snickers bars, think about what is the real truth of breast cancer awareness month...

We do need to make sure that women know to get early mammograms and follow-up appointments. But we do not need to fatten the bottom line of gigantic corporations who hijack breast cancer and use it as a marketing tool to sell more product by simply slapping a pink ribbon on the box.

When you give to a cause, really know where it is going to. What will they use the money for? Who benefits? How much did they spend on the ad campaign in comparison to how much actually is donated.

Our cure is out there. It is in a research lab right now. Support direct research. Support those organizations that directly benefit women enduring breast cancer treatment. If you are going to buy a pink pot holder, buy it because you like the color, because the majority of pink merchandise is not benefiting breast cancer, it is an advertising ploy.

It is hard to look at the mock grave yards set up in neighbor's front yards when you remember how many women have been buried this year. Halloween has made Breast Cancer Awareness month real. Finally.

Forum: WELCOME!

Newbie with bone mets looking for advice

cmhartley — Thur, 29 Oct 2009 15:53:01 GMT

Hi, I was just diagnosed with extensive bone mets via PET scan and multiple MRIs. I was originally diagnosed in 3/2005 with ER+/PR- HER2- stage IIb IDC 3/11 nodes. I was treated with FEC/Taxotere, mastectomy and radiation and placed on tamoxifen as I am still premenopausal. Being the bad patient and in denial I started slacking off with the Tamoxifen over the past year due to side effects and my belief that since I was past the first 2-3 years I was going to be fine and Tamoxifen wasn't helping anyway. Well, I was doing fine until a few months ago when I started having neck pain and then recently when I started having severe pain near my scapula. I had my 6mo visit with my oncologist and she went ahead and scheduled me for a PET scan and lo and behold it lit up like Christmas in all my bones. Because I have been inconsistent in taking my Tamoxifen she put me back on it and started me on Zometa injections. As you can understand, I have an assortment of feelings that I am dealing with....fear of the unknown, fear of death, fear of pain, anger at myself for not taking my Tamoxifen like I should have...etc ....etc...etc. So, I've spent the past week trying to deal with all of that...then on top of that...dealing with the bone pain and recently the horrible Zometa side effects (which thankfully only lasted about 36hrs). Anyway, I was hoping there was someone or others who might help me with a few questions:

1. Has anyone been premenopausal and gotten mets? Has anyone gotten mets while on the tamoxifen? I was due to be off of the tamoxifen next year so what would have happened then? Wouldn't I have been in the same boat? Can bone mets become that extensive in just 1 year? Did anyone who was premenopausal have a hysterectomy/oophrectomy done to put you into menopause? I've heard the Lupron injections are absolutely aweful so I don't want to go there but would consider surgery. Is there any reason why I shouldn't get this done? Isn't this like taking out the source?
2. Does anyone get Zometa injections at different times other than monthly? Any advantage of monthly vs. every 3-6 mos? What about the side effects? Do they truly go away after a few injections? Get worse? Any help with managing the pain? Fever? chills?
3. Is there anything else anyone is on besides hormonal therapy and Zometa? Anyone taking Celebrex?

Thank you so much for taking the time to read this lengthy thread and for all of your help. This is such a confusing, disheartening and depressing time for me right now. I have such a wonderful support system yet feel so alone and scared at times. I have started to do some research and wonder if there is anything else out there for me....I feel like I have to direct my care somewhat.

Cat

I am waiting to hear back from MD Anderson. I was a patient there at one time but chose to go back to follow up with my local oncologist so I'm not sure if they will take me back as a patient. I've called and filled in a new patient request on line and have yet to hear anything.

Forum: ~CLUB METS~

RAINBOWS AMONG US

nosurrender — Wed, 28 Oct 2009 21:04:46 GMT

They say in order to see a rainbow, you have to stand with your back to the sun.
Rainbows have a special meaning here at NSBCF and today, I saw a spectacular show.

Click on each picture to enlarge....

(thank you to the angels who sent them.)

Forum: FAQs

Checking in, rads done, skin mets blooming

wayover20 — Tue, 27 Oct 2009 17:25:31 GMT

I hadn't been posting lately due to "tuning out" evertything to deal with bone mets pain and rads txt. to left hip and right knee. Just when I thought I was done and would get back on chemo a brain MRI revealed boney skull mets so straight onto skull rads (not brain, bone thanks to God). Just finished that 2 weeks ago and tomorrow I see my onc to probably go on Xeloda to see if it does something for the skin mets.

The one on my only boob left has blossomed from a closed pimple size to now a quarter sized sore that's oozing small amount of blood. That just since holding the chemo back on Aug 12th to do the rads. Other skin mets are still closed but have gotten larger in size than what they were.

Anyone have skin mets that responded to xeloda??

Forum: TRIPLE NEGATIVE DISEASE

RISK OF HARM FROM REGULAR SCANS?

ETF — Tue, 27 Oct 2009 03:38:00 GMT

I see so many different opinions-

If we know, as has been well and long established, that high doses of radiation from things like X Rays and CTs increases your risk of cancer, WHY would it be advantageous for your Dr to perform PET scans, CT scans, etc, every 3-6 months if you don't have any symptoms?

It's seems like a darned if you do, darned if you don't idea- if you don't get scanned, you might not catch anything as early as possible, but if you DO gte scanned a lot, you are definitely exposing yourself to cancer causing testing mechanisms- frequently, which in turn would UP your cancer risk in general.

Care to weigh in on this please?

Forum: THE CUTTING EDGE

EDGE/CAM QUEST: supplements got the axe from the onc- what now?

ETF — Tue, 27 Oct 2009 03:31:19 GMT

Original Dx: 2.2 cm tumor, grade 3, 37 y.o.a. Caucasian female
BRCA NEGATIVE
ER +: 10%, others (PR, HER2) zero
Trtmt: 4 A/C, 4 Taxol, Dose Dense, Neoadjuvant
Dbl Mastectomy: result of neoadjuvant chemo was PCR

Considered: Triple Negative but oncologist put me on Tamoxifen for that 10% ER+; still not real happy about this and not sure it is worth all the risks.

1) Showed oncologist list of CAM suggested supplements and she said not to take ANY of them. Said we don't know how any of those supplements interact with interact with Tamoxifen and how they are processed through the liver, etc.; I am totally lost. As a "triple neg," I'm supposed to have a high risk of recurrence but I'm on Tamoxifen and so they don't want me to take anything b/c of liver functioning. Suggestions? Input? Options? Shouldn't GREEN TEA supplements be okay for goodness' sake? And like a teaspoon of Turmeric a day or something?

2) My glucose level went from low 80's for the entire last year to 113 ever since I started this blasted Tamoxifen. The only other drug I take is 1/2 dose (a 5mg dose) of Lexapro. Could this combination or Tamoxifen in general be inducing hyperglycemia?

3) Very first bone density scan was given- post treatment, post chemo. No baseline. Showed I have Osteopenia in neck and spine at 38 yoa. Advice from oncologist was "Take Citracal + D twice a day." I've been doing that for the last 10 years- apparently, it's not helping (I guess this is one place where being on Tamoxifen might actually be helpful for me). Suggestions? Input? Should I ask about Zometa?

4) Vitamin D levels in lab work show lowest possible normal reading- and this is ON a 2000 IU D3 supplement daily PLUS the aforementioned Citracal + D rwice a day. Input?

Thanks Constantine!!!!

Sincerely,
ETF

Forum: THE CUTTING EDGE

Tamoxifin & antidepressants

Mainsailset — Sat, 24 Oct 2009 03:06:24 GMT

Bad cocktail
http://stanford.wellsphere.com/breast-cancer-article/tamoxifen-zoloft-bad-cocktail/842576

Forum: BREAKING BREAST CANCER NEWS