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  • Lovelyface
    Lovelyface Member Posts: 674
    edited December 2010

    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

  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    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.Frown

  • mitymuffin
    mitymuffin Member Posts: 337
    edited December 2010

    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. 

  • moe0279
    moe0279 Member Posts: 200
    edited December 2010

    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!  

  • Titan
    Titan Member Posts: 2,956
    edited December 2010

    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..

  • Titan
    Titan Member Posts: 2,956
    edited December 2010

    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..

  • lrr4993
    lrr4993 Member Posts: 937
    edited December 2010

    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/ 

  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    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!!!

  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    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!

  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    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.

  • phew
    phew Member Posts: 225
    edited December 2010

    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 

  • phew
    phew Member Posts: 225
    edited December 2010

    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 

  • Swanny
    Swanny Member Posts: 147
    edited December 2010

    To All My Friends on this Board!

    Today was my last radiation treatment.  I am DONE! 

  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Swanny,

    EXCELLENT!SmileWinkLaughing

  • MonikaV
    MonikaV Member Posts: 201
    edited December 2010

    Happy for you Swanny!!!!!!!!

  • PinkPeeCA
    PinkPeeCA Member Posts: 27
    edited August 2013

    Yeah Swanny!  Go in good health girl!

  • TifJ
    TifJ Member Posts: 1,568
    edited December 2010

    Way to go Swanny!! Hope you go out and celebrate!!!

  • laurajane
    laurajane Member Posts: 321
    edited December 2010

    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.

  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    Laurajane:  I was just wondering where you were!  You have a great day, too!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013
    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.

    View Full Image


    Getty Images
    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.
  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    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.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    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). Frown

    Stay warm everyone!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013
  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    Thank you for the snow, Heidi!!! LOL!

  • cc4npg
    cc4npg Member Posts: 764
    edited December 2010
    Heidi:  It's beautiful... simply beautiful.
  • Titan
    Titan Member Posts: 2,956
    edited August 2013

    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.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    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.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    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?

  • Lynn18
    Lynn18 Member Posts: 416
    edited August 2013

    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.

  • moe0279
    moe0279 Member Posts: 200
    edited December 2010

    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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