Calling all TNs
Comments
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MBJ - thank you, thank you, thank you, so very much for such wonderful information. I totally agree with everything you have written. It helps me a whole lot in my decision making.
God Bless
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99Sporty,
I had nausea, no appetite, or taste while taking AC+T chemo, and lost 30 LBS. No side effects with Avastin. Please during the holidays enjoy drinks and food. I would get so down when I couldn't taste good spaghetti sauce.
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Lynn18, My hair actually came in grey/white and after looking at Emma Watson's picture on Marie Claire, I tryed to dye it her color.
Heidi, I keep hoping for the curls, but none so far.
Lovelyface, I hope you can find a surgeon you can trust and lean on for advice. We need to be at peace as much as possible.
I did have a lumpectomy, and now I have just 10 more rads to go. Today they told me I would finish all treatment on December 30th, and to my surprise, I burst into tears. It was just the overwhelming emotion of this whole journey from diagnosis through chemo and radiation. I'm afraid I startled the radiation technicians.
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mommafluff, heres a link that helped me read my pathology report. I found it helpful!
www.networkofstrength.org/information/diagnosis/pathreport.php
Hope this helps!
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There is a thread on here somewhere called "abbrevations for newbies" If you do a search you can probably find it.it's probably in the just diagnosed thread. It's a good thing to refer to.
I want to get skinny too!
Suze..glad that chemo is kicking your cancer! I dunno..on the chemo pre surgery or after surgery...yes..I wanted it out right away...but if I had chemo b-4 surgery and could see it DYING..well..I would have loved that too!
I was tn from the biopsy... 0% er/pr..1-2% her..the FISH test determined not enough to have herceptin.
Momma..sounds like you will get your treatment plan.usually 6 weeks between lump and chemo....they want your body to heal between...it's a nice break..time to get your body ready for chemo..they want you as healthy as possible..
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There is a thread on here somewhere called "abbrevations for newbies" If you do a search you can probably find it.it's probably in the just diagnosed thread. It's a good thing to refer to.
I want to get skinny too!
Suze..glad that chemo is kicking your cancer! I dunno..on the chemo pre surgery or after surgery...yes..I wanted it out right away...but if I had chemo b-4 surgery and could see it DYING..well..I would have loved that too!
I was tn from the biopsy... 0% er/pr..1-2% her..the FISH test determined not enough to have herceptin.
Momma..sounds like you will get your treatment plan.usually 6 weeks between lump and chemo....they want your body to heal between...it's a nice break..time to get your body ready for chemo..they want you as healthy as possible..
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MBJ - I too have been reading up on inflammation. I am starting to really believe that is at the root of my cancer. It all makes sense. I have always eaten a highly inflammatory diet, and after dealing with several very stressful situations in the last few years, I was even worse about my food choices.
I am now trying to stick to an anti-inflammatory diet. I hope this will keep any recurrance at bay, as well as help with allegeries, colds, and other stuff I have had going on that seems likely to be an inflammation issue. If nothing else, I should age beautifully! If you read the perricone anti-aging diet, it is basically the antiinflammatory diet.
If you google "nutrition" and "self" it should pull up a great website that gives you tons of nutritional data on foods, including what seems to be very important for anticancer - glycemic index and inflammation index. It is shocking to see the inflammation score for some of the crap food I have always eaten.
ETA: here is the site http://nutritiondata.self.com/
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Healthy Weight Loss: The absolute healthiest, best way to lose weight is to do the Perricone 21 day challenge. It is a high protein, healthy Omega 3, high antioxidant diet that is not like a diet unless you exist on pasta, sugar, potatoes, and bread because you can't eat these things. the good news? You eat every couple of hours, you eat a variety, you can still have dairy products, and you never are hungry. You don't lose muscle with this diet, only fat, and....if you follow it, you will easily lose pounds. I lost 30 on it, well, I had some help with chemo. I never gained the weight back though I no longer do it. If you are obese, he has a healthy shake to help you with the cravings and to provide the nutrients without the calories. Great for cancer, too!
Lovelyface: That makes me so happy that I have helped you! That is all that I want to do is be of assistance. Thank you as you have made my day!!!
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99Sporty: See post above but to add to it--I craved protein on this diet, so it's a good one to be on during chemo as you are going to want lots, and lots of protein. Chemo aslo kills muscle tone, so this diet will help you retain some. good luck and you will find much support on here!
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mommafluff: They either do chemo before or after the MX to insure there aren't any remaining cancer cells floating around and to prevent recurrence. If you had a lumpectomy, they would do radiation and if you had lymph node involvement and an MX they would also add radiation.
Lovelyface: I forgot to answer a question you had: 0/2 nodes means that they took 2 of my sentinel nodes but they were cancer free.
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momma--probly you found your answers by now, but----
i found good answers and explanationsand therfor comfort
from clips on Utube (nobody told me anything about drainage what or why orhow) the natonal cancer institute http://www.cancer.gov/dictionary
mayo clinic www.mayoclinic.com/health/breast-cancer
http://www.cancercenter.com/glossary/growth-factors.cfm
mastectomy info and graphics http://www.emedicinehealth.com/mastectomy/article_em.htm
BRAC or genetic issues http://www.genetichealth.com/BROV_Gen_Dis_in_Ashk_Jews.shtml
practioners, medical centers and our own bodies are clearly so varitous. i had a lot of high dose radiation for some other cancers and said my prefernce was no more radiation (of course they agreed with me) my brca (ng for a gene mutation mostly in ashkenasic jews) test came back negative which yey thay or i probly would havd been amputated sown to floor (joke). so, in my case the answer is tamoxifen for 5 years, 6 mo check ups w/oncologist and mt thorasic surgeon. other women who have reconstructive surgery travel some different airways.
i was fortunate in another way. i had a mammo on a tues, a wk ater a core biopsy a week later surgery. didnt have to stress ore ponder. i have seen that some women have had to wait weeks and months. i think i would jumped in fronyt of a moving train by then!
good luck (& hopefully not tmi)
~ nancy carol
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oh yeah! a post caveat:
hopefully you can read my letters----2 of my cancer surgeries were in my brain. a consequence of that is B A D brain/eye communication. I HAVE NONE my typing is plain ol'goofy hope its not too rough for y'all
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To All My Friends on this Board!
Today was my last radiation treatment. I am DONE!
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Swanny,
EXCELLENT!
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Happy for you Swanny!!!!!!!!
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Yeah Swanny! Go in good health girl!
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Way to go Swanny!! Hope you go out and celebrate!!!
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I wanted to pop in and say hi to everyone. I hope to catch up on the posts later tonight. I hope everyone has a wonderful day.
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Laurajane: I was just wondering where you were! You have a great day, too!
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Yesterday the Food and Drug Administration moved to revoke its regulatory approval of Avastin for metastatic breast cancer. Withdrawing a cancer treatment is almost never done, and though the decision was expected, that does not make it any less reprehensible.
The FDA said in a statement that it is removing Avastin's breast cancer indication because the biologic does not provide "a sufficient benefit in slowing disease progression to outweigh the significant risk to patients." Ponder that "sufficient." The agency is substituting its own judgments about clinical meaningfulness for those of practicing oncologists and terminally ill cancer patients.
The risks of Avastin are real, but manageable. Clinical trials do not show that the drug extends life overall in the aggregate, but they have shown that it allows women to live longer without their disease getting worse. Avastin improves progression-free survival by about four months on average. Different patients respond differently, and the drug is far more effective in some than in others, for reasons that researchers still do not understand. There aren't any perfect therapeutic options in end-stage oncology, and Avastin ought to have remained one of them.
Looking at the same data, the European Medicines Agency—the FDA's counterpart in the European Union—decided on Thursday that it would continue to approve Avastin for breast cancer in combination with chemotherapy. In October, the U.S. National Comprehensive Cancer Network—a consortium of 21 leading cancer centers that issues evidence-based medical guidelines—reaffirmed its position that Avastin is valuable in some cases.
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Genentech is contesting the FDA ruling against its cancer medication, Avastin.
But such finely graded distinctions are not part of the FDA's bureaucratic culture. The FDA provisionally (and reluctantly) approved Avastin for breast cancer in 2008 under an accelerated process for serious diseases. But the cancer drugs division believes that such flexibility is too friendly to industry and took extraordinary measures to rig the review process against Avastin's maker, Genentech, as we reported on August 18 in "The Avastin Mugging."
Genentech is contesting the ruling through a formal FDA appeals mechanism, and Avastin will remain available on an "off label" basis, because it is still approved for other cancers such as those of the lung, kidney and brain. However, private insurers are generally reluctant to reimburse for therapies that are not FDA-approved, and Medicare, which is the dominant payer in oncology, never does.
One depressing implication is what the decision says about health-care financing as government entitlements expand. Avastin is a political target because of its high cost—a typical course runs as high as $88,000—and after ObamaCare all medical questions are inevitably political questions too. In September, the FDA and Medicare proposed a "parallel review" process that will allow the two agencies to coordinate market and reimbursement approval. Medicare is also increasingly opening "national coverage determination" reviews that allow a government board to decide if a therapy is "reasonable and necessary."
Another danger is to the future of medical innovation. Cancer treatment advances incrementally. Every year doctors are better able to pair medicines with the biomarkers pointing to the individuals who are most likely to respond and learn more about tumor angiogenesis, which is the process of cancer growth that Avastin helps to choke off. The FDA's assault will make it harder to conduct and enroll patients in further clinical studies, to say nothing of its message about the regulatory risk for drugs still in development.
The greatest tragedy will fall on the women who are suffering from an incurable disease and whose caregivers are trying to improve their quality of life in the months they have left. The FDA is taking away one of their only options.
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HeidiToo: You beat me to the punch by 17 minutes! I just copied and pasted this. When I was researching my situation a year ago November, I opted to not do Avastin as it was showing signs of not working so great even then. So dissappointing for many.
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First snow today!
This was from last year, but it's getting me in the mood for more! Right now I'm sitting cozily by the fire watching it come down. Everything's canceled around here (including tonight's Christmas Party at the Nature Center).
Stay warm everyone!
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Thank you for the snow, Heidi!!! LOL!
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Heidi: It's beautiful... simply beautiful.
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Yay Swanny! YOU DID IT YOU DID IT YOU DID IT WAHOO!!!!!!!!!!!!!!!!!
Hey LJ...every time you post I smile...you do us all good!
And Heidi...well..she is my twin...(older twin..ha ha)...but twin none the less...snowed in hey? My DD goes to Kent State and they had 20 inches! An hour south..where I live we had nowhere near that...I honestly don't mind the snow..or cold...as long as the electric stays on..keeping my fingers crossed..
I saw that article about the avastin...read about the side effects being worse than the positive effects...that sucks...
Ok..chemo..I'm a little over 16 months from chemo...side effects? I can honestly say NONE! I'm thinking back to last year at Christmas time and how I felt and I can honestly say that this year I'm better..physically and mentally...I feel..dare I say it.."normal"???????
Ok..a little chubby..that is all.
MJB..I have to be honest with you..I just really can't do all these diets you talk about..I'm just not that disciplined...HOWEVER, can you explain some of these diets to us? I'm willing to try some things. I have to admit I ate 3 wonderful Christmas cookies today..and I loved them.
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Diet? Discipline? Not me! I am totally back to normal in what I do and eat. And happy to be there, I might add. I got tired of living a fear-based existence. I stared the beast in the eye... and the beast blinked.
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And here, for what it's worth, is the "beast" (or at least the way I felt when it was breathing down my back). Creepy enough for you?
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I find the FDA withdrawal of Avastin disturbing. For many women on this website with mets, it seems Avastin was one of the only options they had. There is a WSJ editorial which is posted on some of the other forums which suggests that Avastin was a political target because of its cost. It states that the risks associated with Avastin are real, but manageable. It is not being withdrawn from use for other cancers, and it sounds like Europe is still using it. This article calls it a tragedy for women with incurable disease. I would think especially for triple negative patients who have no other options.
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Ok ladies...i find my self stressing about the order of my chemo...Im not sure where a good place to ask these questions so im coming to my fellow TN ladies...In the clinical trial im participating in I will have taxol 12 weeks first with possible 2 other drugs (can't remember there names) and then ac (every 2 weeks for 8 weeks)...can anyone tell me the side effects of each? has anyone participated in a Clinical Trial..I will first have chemo, then surgery, then rads. I know you all will help me understand more...Is there anywhere to find this information?
I love your wonderful pictures...very uplifting...thanks girls...
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