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

Sad News, Svetlana is now an angel

Thu, 03 May 2012 17:07:48 GMT

Many of you knew our dear Svetlana, "Sstefano"
She passed away with her family around her. She was a loving woman who fought ever so hard.... she was very close to our Constantine and he helped her immensely.
She came to us with advanced TNBC and lived a long time with it.
Even though she did not post often, she was a valued member here and she will be missed.
We are so fortunate to get to know each other.... there are such incredible women who make up No Surrender. It is ever so hard to say goodbye, but the gift of having known someone we normally would have never met, is a beautiful thing.
The stars are a bit brighter tonight as another angel joins our other sisters who have gone before us.
God Bless You, Svetlana, we will miss you. Thank you for being part of our lives.

gina

Forum: CLUB METS (click here for more)

Blood Test Predicts Breast Cancer

Tue, 01 May 2012 06:33:38 GMT

If we only knew then what we know now.... this test is huge for future generations
http://www.telegraph.co.uk/health/healthnews/9237415/Blood-test-could-detect-breast-cancer-years-in-advance.html

Forum: BREAKING BREAST CANCER NEWS (click for the latest news)

TNF Blockers

Mon, 30 Apr 2012 23:39:16 GMT

Hi Edge!

I realize that this topic may not be one included in your research, and if that's the case please don't spend a lot of time on this. Just let me know.

I have Rheumatoid Arthritis and Sjogren's Syndrome. I am borderline for additional autoimmune diseases. While being treated for triple negative breast cancer in '07, we stopped all of my arthritis drugs (I had just switched from Remicade to Enbrel; I also took methotrexate and an anti inflammatory). Thankfully, during tx, I was symptom free of RA and all other autoimmune issues). After tx ended, I went back on Enbrel, methotrexate, and an anti inflammatory with really good results.

In '11 I developed oroparyngeal cancer. This cancer was not a recurrence, but a new primary. I was in tx from October until January, and again stopped all RA drugs during this time. My RA had been in remission until recently. After my second cancer, my Rheumatologist was hesitant to allow me to resume the TNF blockers. He discussed this with my Onc, and he agrees, no more Enbrel.

My question for you is are you aware of any breast cancer research that included RA patients? I'd like to research alternatives to TNF's, but I'm not finding much information. Is it a correct assumption that while TNF blockers carry an increase of lymphoma and leukemia, does a previous dx increase the risk even more so? Any info would be greatly appreciated. And again, if its not something you are familiar with, no harm no foul.

Carynn

Forum: THE CUTTING EDGE (click to learn what you need to know)

Best supplement(s) for immune support?

Mon, 30 Apr 2012 05:32:11 GMT

I'm actually asking this for my 20 year old daughter, who has no definable disease, but seems to get sick a lot more than most people, and has for years. This winter she has basically been sick all winter. She's not very energetic, either. What supplement or supplements would you recommend for immune system boosting?

Also, I am about to go on a system immune suppressant for my autoimmune disease. Now, all winter, while everyone around me was sick, I haven't been sick. An immune booster would run counter to the suppressant, wouldn't it? I'm not sure what supplement/s I take that help my immune system, but I rarely get sick since I started them. So the question is, would taking an immune booster be counter productive to the immune suppressant, or are there supplements that you can take (like, say, zinc) that help without interfering with the action of the suppressant? If it is counter productive, do I need to go thru my supplements to see which are boosting my immune system?

I suppose a quick list of supplements is in order here. So:
EGCg, Calcium, Magnesium, Rhodiola Rosea, Phytosterols, Resveratrol, Vitamin D, multivitamin, Curcumin, CoQ10, Melatonin, flaxseed, and fish oil.

Thanks!!

Forum: NEW FRONTIER:CAM/ALTERNATIVE (click here)

What We Do and Why Support It

Wed, 25 Apr 2012 00:06:05 GMT

What We Do and Why Support It - A Personal Perspective

Here's my very own ten-point list of What We Do at No Surrender, and it represents just a fraction of the services because everyone in this Community is involved in providing hope and guidance for all members.

We provide state-of-the-art evidence-based guidance to the No Surrender Community, the only evidence-based survivor forum on the Internet.
We undertake special evidence-based reports on selective topics (aspirin and BC, benefits of Zometa, etc.).
We provide unbiased evidenced-based assessments of alternative therapies (DCA therapy, Insulin Potentiation Therapy (IPT), etc.).
We provide detailed patient-individualized explanations and interpretations of the real significance of pathology (scans, markers, etc.) findings.
We provide comprehensive patient-individualized clinical reviews of best treatment options and their tradeoffs.
We provide comprehensive reviews of patient-individualized of the most promising options clinical trials available.
We provide experience-based patient-individualized recommendations for best oncologists for second opinions in a particular geographic area, for your specific case.
We provide comprehensive evidence-based answers and guidance to questions in all aspects of cancer management, from diagnosis, pathology, and treatment, to coping and managing with adverse side effects, and complex issues in drug-drug, drug-food, and drug-CAM interactions.
We provide state-of-the-art regularly updated best-evidenced CAM regimens as adjuncts to traditional therapies.
We provide the Paths of Hope series to highlight breakthroughs in long-term survival even in the most challenging forms of breast cancer, at all disease stages.

Support NSBCF, and support hope and promise through knowledge and caring.

Edge

Constantine Kaniklidis

Director of Medical Research

and Proud to be part of the No Surrender Community (The House That Gina Built)!

Forum: WELCOME TO NO SURRENDER! (click to learn more)

original diagnosis = 7 years

Wed, 18 Apr 2012 14:49:15 GMT

Today marks 7 years since my original dianosis with stage 2a TN breast cancer. I wish I was still celebrating NED but instead I am celebrating NED with my stage 4 diagnosis!

Was living my life.....and it was all coming together for me. Just 30 years old and BAM.....it changed in a second! But here I am....still fighting and still winning the battle! Almost 2 1/2 years since my mets diagnosis....here's hoping to many, many more!

Thank you for this website Gina! it has given me much hope since my cancer returned! I am FOREVER grateful!

Cathi

Forum: CLUB METS (click here for more)

PET Scan

Sat, 14 Apr 2012 02:32:54 GMT

Well, got my PET scan back today. Spot is still there behind the sternum in a lymph node. Officially, the report says stable, but the spot appears slightly smaller and less bright on the actual picture.

So, 2 more rounds of Taxol and Herceptin. My doc feels that it must be doing something since the spot is not bigger and no new spots have appeared. If the next scan shows no improvement, we will switch to a new chemo.

So, I guess we are okay. Wanted to hear that it was gone, but we will take this over other options right now!

Forum: CLUB METS (click here for more)

4 Year Celebration

Sat, 14 Apr 2012 00:09:31 GMT

I just had to check in to say that back 4 years ago when I found Gina through googling triple negative breast cancer, she was there for me & my daughter on a night that I didn't know how I was going to do it. Do you remember me Gina? I was so scared and so worried and had just been diagnosed with triple negative breast cancer.
I just celebrated 4 years this April of being done with lumpectomy/chemo and radiation!
I feel great and just wanted to offer hope to others. I know how much that helped me.
Love, Prayers & Hugs,
Cheryl from Ohio

Forum: TRIPLE NEGATIVE BREAST CANCER (click to find hope)

Arimidex and CRPS?

Mon, 09 Apr 2012 12:55:30 GMT

In my ongoing knee pain saga, my orthopedic oncologist says he believes the widespread, constant pain in my left leg, ankle, foot and sometimes thigh, is Complex Regional Pain Syndrome. Not a great thing to have. He attributes it to my knee injury (frayed meniscus) but I have to wonder ... could Arimidex be the culprit? I've had increasing joint pain in all kinds of places during the almost two years I've now been on the drug.

I really reallly don't want to have CRPS. It hurts like hell and I can't stand the thought of always having it. I'm already walking with a pronounced "jerky" gait and feel like a 90 year old woman. Dare I have hope that once I'm off Arimidex the CRPS might go away?

Forum: WHAT'S YOUR QUESTION? (click for answers)

Patchy Scan? Help!

Mon, 26 Mar 2012 14:29:30 GMT

My left knee was giving me fits, so I had an xray and MRI. Verdict is a frayed meniscus. "Another finding ..." (don't you just cringe when you hear those words from the doctor?) from the MRI is a "patchy scan" in the tibia where it meets the knee. Radiologist wants me to get a bone scan to rule out mets. SIGH. I just had a bone scan six months ago.

I tried googling patchy scan and I get tons of medical jargon about marrow, but I really don't see any clear references to cancer.

Do I really need this scan?

Sorry to vent, but I've become afraid to go to the doctor now for ANYTHING, because it seems there's always some "other finding" around cancer.

Forum: WHAT'S YOUR QUESTION? (click for answers)

OUR BEFORE FORTY INITIATIVE: NOW MORE THAN EVER

Sun, 25 Mar 2012 22:56:18 GMT

The Before Forty Initiative Helps End the Disparity for African American Women

The Washington Post and Kaiser Family Foundation's study is in: PROOF POSITIVE THAT OUR BEFORE FORTY INITIATIVE WILL SAVE AFRICAN AMERICAN WOMEN'S LIVES.

Fear's big role in breast cancer disparity

Originally published: March 21, 2012 8:58 PM
Updated: March 22, 2012 6:40 AM
By VANESSA WILLIAMS. The Washington Post

Doctors and advocates say a fear that keeps possible breast cancer patients from acting quickly is all too common among black women. It is among the factors that contribute to a disturbing trend: Although they are less likely than white women to get breast cancer, black women are more likely to die from it.

The difference in mortality began to emerge in the early 1980s. By 2007, the American Cancer Society found that, even though death rates for both groups were going down, the rate was 41 percent higher among African-American women.

Some health-care professionals and advocates contend that the disparate mortality rates argue for a more urgent effort to reach more black women.

They are frustrated that, with all of the information available about the importance of early detection and treatment, the statistics remain so dire.

In a survey focusing on African-American women by The Washington Post and the Kaiser Family Foundation, 75 percent of black women rated their health as good or excellent, about the same percentage as white women, black men and white men.

Health data, however, tell a different story. Across the country, women of color report higher rates of disease and health problems, are more likely to be uninsured and have had fewer doctor visits for preventive care. A 2009 Kaiser study noted "consistently higher rates of health challenges among black women, ranging from poor health status to chronic illness to obesity and cancer deaths."

For breast cancer in particular, experts cite some additional factors: Black women often get their diagnoses at later stages and appear to be more susceptible to aggressive tumors. They also have a higher rate than white women of a diagnosis before age 40.

Regina Hampton, a surgeon who works with the Capital Breast Care Center in the District of Columbia, which serves uninsured women, said, "a lot of women come in at later stages . . . and what I hear from my patients is they're all afraid."

Besides the fear that most women have that the disease will rob them of femininity or sexuality, Hampton and others think black women also carry angst stemming from a historically unhealthy relationship between African-Americans and a medical system that was inaccessible.

Breast cancer, she said, "is the most treatable female cancer that we have. I think one of the challenges is getting people to realize that the survival rates are very good for breast cancer if you present early. I think that message has not resonated through our community."

PLEASE JOIN US IN THE FIGHT TO SAVE THE LIVES OF AFRICAN AMERICAN WOMEN. JOIN THE BEFORE FORTY INITIATIVE.

Forum: BREAKING BREAST CANCER NEWS (click for the latest news)

CAM for Triple Neg Lepto Mets

Wed, 14 Mar 2012 01:11:58 GMT

Dear Edge,

I was just diagnosed with lepto mets. Do you have CAM recommendations that are specific to this difficult to treat condition?

My treatment plan is 10 radiation treatments (5 completed) to the spine and then Xeloda monotherapy. Depending on how effective that is, we will consider IT therapy after one Xeloda cycle. I am also on Fragmin injections for a blood clot.

Your input is always so helpful - thank you!

Laura

Forum: WHAT'S YOUR QUESTION? (click for answers)

first wine... now xanax... Edge-- pls give your opinion!!

Thu, 08 Mar 2012 21:39:32 GMT

Dear Edge-- Pls see the article below. Your thoughts?? My 1st thought was that the grp receiving hypnotics were sleep-deprived (hence the Rx for a hypnotic!) and were therefore ALREADY at a greater risk... ie, there's a confound there... My 2nd thought is that xanax is not a hypnotic. However, they list a bunch of benzos... Ideas?? I know I should stop relying on xanax for a variety of reasons. However, 0.5 mg at night helps me sleep. I have reduced my dose significantly but haven't weaned off already. Don't want to worry that the drug I am taking to quell worries is going to kill me! I was under the impression that ativan and xanax (though not without other risks) were pretty risk-free in the cancer recurrence department... thanks in advance for the help. xxoo

Hypnotics Linked With Increased Mortality, Cancer
Elsevier Global Medical News. 2012 Feb 27, S Worcester
Hypnotic drugs are associated with a more than threefold increase in the risk of death, even when prescribed in limited quantities, according to findings from a large matched cohort study.
The risk was increased more than fivefold among those receiving the highest quantities, Dr. Daniel F. Kripke of the Scripps Clinic Viterbi Family Sleep Center in La Jolla, Calif., and his colleagues reported in BMJ Open.
In addition, the use of hypnotic drugs was associated with an increased incidence of cancer among those receiving higher quantities.
The hazard ratios for death in 10,529 patients from a large health system who received hypnotic prescriptions for poor sleep, compared with 23,676 matched controls with no hypnotic prescription, were 3.60 for those prescribed 0.4-18 doses per year, 4.43 for those prescribed 18-132 doses per year, and 5.32 for those prescribed more than 132 doses per year, the investigators reported (BMJ Open 2012 ).
The "modestly increased statistically significant" elevations of incident cancer were seen in those in the middle and highest tertiles of prescribed doses (hazard ratios, 1.20 and 1.35, respectively), and the hazard ratio for lymphomas and for lung, colon, and prostate cancers were even greater than those for current smoking, they added.
The associations held in separate analyses of several different hypnotics, including new short-acting hypnotics and older hypnotics, and after poor health was controlled for. Analyses were performed for zolpidem, temazepam, eszopiclone, zaleplon, other benzodiazepines, barbiturates, and sedative antihistamines. The highest mortality risk was with eszopiclone.
The data also were adjusted for age, sex, smoking, body mass index, ethnicity, marital status, alcohol use, and prior cancer.
Even after different classes of comorbidities and each patient's overall burden of comorbidities were considered, the results remained robust in each comorbidity group.
"Whereas the raw death rate of the user cohort was 4.86 times that of non-user controls, adjustment for all covariates ... with stratification by comorbidities only reduced the overall HR to 4.56," the investigators wrote.
Subjects in this study were members of a large U.S. health system, and had a mean age of 54 years. All were followed for an average of 2.5 years between 2002 and 2007. Patient data were derived from longitudinal electronic medical records, and hypnotic users and nonusers were well matched with respect to age, sex, period of observation, and BMI. They did not differ in ethnicity, marital status, or smoking status, the investigators said.
The findings, which support those of numerous prior studies that also suggested a link between hypnotics and increased mortality and between hypnotics and cancer, are important given that hypnotic drugs are among the most widely used treatments in medicine; an estimated 6%-10% of adults in the United States used hypnotics in 2010, the investigators reported.
Of note, the top third of hypnotic users in this study were prescribed nearly 93% of all the prescription doses of hypnotics.
"Perhaps the most striking finding was that an increased hazard for death was present even in the lowest tertile of hypnotic use, such that hypnotic drugs were associated with a 3.6-fold increased risk of dying for patients using less than 18 hypnotic pills per year," they wrote. The minimal impact of the major confounders that were controlled for in this study suggest it is unlikely that confounding of other inadequately assessed confounders could explain the high mortality rate seen with hypnotics.
As for why the association exists, multiple causal pathways have been demonstrated, the researchers noted.
These include, but are not limited to, mixed-drug overdoses and increased incidences of depression, impaired motor and cognitive skills, sleep apnea, gastroesophageal conditions, and infections. All of these, the authors pointed out, could contribute to mortality, such as by automobile accidents with impaired motor and cognitive skills or by cancer with gastroesophageal conditions and infections.
The findings are limited by the fact that the electronic health records used in this study provide information on medication orders only, and not on dispensing or ingestion of the medications. The investigators also were unable to control for depression, anxiety, and other emotional factors. Still, they asserted that the findings raise concerns about the use of hypnotics.
Rough order-of-magnitude estimates suggest that in 2010, hypnotics may have been associated with 320,000-507,000 excess deaths in the United States alone, the investigators reported.
Although this study cannot define what portion of the mortality associated with hypnotics was directly attributable to the drugs, the consistency of the estimates suggests that the effect of hypnotics was substantial.
"Even 10,000 yearly excess deaths caused by hypnotics would be too many," they said, concluding that it is prudent to weigh the evidence of mortality risks, as shown in this and 24 prior studies, against the meager benefits of hypnotics, in order to reconsider whether even short-term use is sufficiently safe.
Dr. Kripke reported a family interest in an investment corporation, which has a small percentage of its assets in stock of Sanofi-Aventis and Johnson & Johnson. The other authors reported having no relevant financial disclosures.

Forum: THE CUTTING EDGE (click to learn what you need to know)

Decisions.......

Tue, 06 Mar 2012 14:55:56 GMT

I have some pretty heavy decisions to make in the next couple of weeks. While I have been having some great success with Gem/Carbo/BSI-201, it has really taken its toll on my body. We have had to delay many recent cycles due to sickness, low white counts or low platelets. I have my last day of the cycle today. Will have a PET scan on March 15th, with results on the 20th with my oncologist. While I have been NED since Sept. 2011, I am not sure what this scan will show. I feel pretty good, lack energy is my biggest hurdle, along with extra weight and aches and pains from carrying this extra weight. My liver functions continue to be normal, my CA 27-29 continues to flucuate between 40 and 48. My blood pressure continues to be normal. My heart rate has started to increase....sometimes as high as 130 bpm. I am going to see about having an EKG today just to make sure my heart is ok. I have been on Gemzar since November 20, 2009 with only a two month break in that time span. I have been on Carbo/BSI since November 15, 2010. My body is just plain TIRED!!! I am not ready to give up and stop treatment all together, but was wondering thoughts on just doing BSI alone and dropping the gem/carbo. I know that this is a total crap shoot and so many things could happen if I do this, but if I continue who's to say that my heart won't just give out. What are the long term effects of chemo on not only my heart, but my other vital organs? What are the long term effects of the steroid I get once a week for two weeks? I have a huge amount of faith and really that's what it boils down to....who do I trust more? My doctor or my God?

Do you guys have any thoughts, advice or words of wisdom? Edge, do you have any medical information as far as BSI and how it works alone? Oh man....I am just so confused!

Cathi

Forum: CLUB METS (click here for more)

Peripheral neuropathy

Thu, 01 Mar 2012 21:40:28 GMT

I think I have peripheral neuropathy in my feets, it is hard to walk and I have pains in my feets, like as I was dancing on highheels two days....
I have it from yesterday, but I googled it and found it is common with the Taxanes...
I am on Taxotere and Xeloda treatmen, I made my second Taxotere in Friday.
With my first one I haven't such issues... Today I feel so bad, and that PN is on the top...
Are there some things to do to feel better? Is it permanent or will last while the all treatment... I will ask my ocologiest in the next week, but I know your advices are unsurpassed.
I was wondering if my dose was too high? I was taking 160 mg Taxotere on 21 days and 2 times daily * 3 pills Xeloda for 14 days + 7 days rest.
I am 61 kg, 175 sentimeters high.
If Constantine could add his oppinion I will be more than gratefull!
My Tumor marker CA 15-3 was about 50 points down for 20 days, after the first treatment. Hope the combo is working....
Oh, I just notised the Constantine's post for the Avemar! We have it in my country and I may start taking it. Do you think it could be taken with Taxotere+Xeloda combo?
Or maybe to start taking B6 or/and B12?

Forum: CLUB METS (click here for more)