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Calling all TNs

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Comments

  • PinkPeeCA
    PinkPeeCA Member Posts: 25
    edited November 2010

    to Laurajane,  I don't know if you got through on the phone numbers about parp etc. but if you want some other options, I have had three CTs so far and my tumor has been reduced by 75%,  I dread the taxol, but want the lumpectomy and radiation.  The way PARP seems to be moving around here, I think it may be standard treatment in another year or two and hopefully covered by insurance.  Three tumor boards, recommended chemo first for me, but as you know, we're all so different.

    Best thing yesterday:  Got dolled up in a wig and went to my daughter's vb season wrap party and hung out with 6 lovely ladies who tried on my wig after a margarita!  Watching twelve ten-year olds play with such love and affection was really a treat.  Son turned 14, and had a great group of boys over for a sleepover.  Nice kids, great night.

    Go OUTSIDE if you can, walk, breathe air.  It really helps me.  K

  • MBJ
    MBJ Member Posts: 3,671
    edited November 2010

    Titan:  I cannot tell you how many times I have done that and I was too tired to even try and repost. LOL!

    Laurajane:  I sent you a PM.  My third opinion was a charm!

    Hydeskate: So glad that you are NED and came hear to tell your story-thanks so much for sharing.

    California thinks it's summer again so I am going outside to enjoy!  Have a great Sunday everyone.

  • laurajane
    laurajane Member Posts: 305
    edited November 2010

    Pinkpee- Taxol worked for about 5 weeks shrunk my tumor and lymphs to the point I could barely feel them and then by eek 6  my tumor started growing rapidly and my lymphs actually swelled more and more daily until surgery. Moderate to severe pain once they started growing again so quickly.Thanks,I called both of those numbers twice and left messages but I have not received a call back. I was under the impression you had to be stage4 for the compassionate care parp inhibitor. Perhaps I was told this incorrectly by 2 different oncs. Are you on Carboplatin with the Taxol?

    MBJ- Sweetheart, thank-you as always for you PM. Going with the gut and a little input from my friends. 

    Teka- Feeling paranoid too! Funny the animosity I feel from my oncs nurse and her. 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited August 2013

    LJ- the onc I saw at Sloan-Kettering gave a time frame for starting chemo after surgery. It was something like 84 days, and had to do with the life cycle of the cell. Ask when you go to Sloan. I'll look for her name in my files and add it back here later.

    Diana Lake was her name. If you Google MSK you will get a link to all their physicians' online bios.

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011

    With a face like this words are not needed...

  • Titan
    Titan Member Posts: 1,313
    edited November 2010

    try 15 months off chemo and still doing dumb things...How long can we use chemo brain as an excuse anyway?  My co-worker who is tn is 7 years out and she is very good at her job...she doesn't forget what she is saying when telling a story (like I do). I guess the good thing is..is that I know when I screw up now..during the chemo fog I didn't know I screwed up and didn't really care!..during chemo I often wore different color socks, different shoes...yes really...and sometimes wondered where the heck I was going when I was driving to and from work and to the grocery store..I'm not like that now..it gets better...really...

    LJ...hum...November 23 is only a couple weeks away...and you just had your surgery..IMHO..very humble..I think if you can wait a couple of weeks then you should.  I think that sometimes our doctors have their protocols and their set standards of taking care of us that they refuse to come out of the box sometimes...are you going to die in 2 weeks..no..unless you get hit by that proverbial bus they talk about alot on here...

    Have a great week everyone!  Going to press that dang submit button now...I hope! Laughing

  • Titan
    Titan Member Posts: 1,313
    edited November 2010

    Thanks Luah and Lovelyface with your info on the Brac testing...for me..I'm comfortable NOT taking the test...for some reason I feel that my tn is one of the random type of tn's...lucky me..huh? It's kind of a gut feeling for me...not denial..just a gut feeling..I honestly feel that my daughter will be OK...Obviously she is aware of the situation and taking very good care of herself by doing self breast exams and going to the ob/gyn. I am also making her take Vitamin D3.

  • MBJ
    MBJ Member Posts: 3,671
    edited November 2010

    LJ: HeidiToo is right--there is a timeline for these things but I forget what it is. 

    HeidiToo:  Cute!!!!  That puppy looks like he got caught with his paw in the dog cookie jar!LOL!!

  • Luah
    Luah Member Posts: 626
    edited November 2010

    Titan:  Completely understand where you're coming from!  Besides, without a strong family history, the odds are strongly in favor of being  BRCA- .  At least one study showed that only 11% of trip negs are BRCA+ .

  • MBJ
    MBJ Member Posts: 3,671
    edited November 2010

    Ladies, I just had my 3 month check up and everything was fine (blood tests and physical check up only).  This morning I woke up with the glands under my neck completely swollen.  I do have a bit of a cold (again, sigh) but should I be concerned?  Should I tell my dr?

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011

    MBJ- hmmm... probably if they don't subside in a few days I'd give the doc a call, just for peace of mind.

  • TifJ
    TifJ Member Posts: 804
    edited November 2010

    MBJ is it normal for you to have really swollen glands when you get a cold? I agree with Heiditoo.

    Tiffany

  • MBJ
    MBJ Member Posts: 3,671
    edited November 2010

    Thanks Heidi & Tiffany for replying so fast.  No, I usually don't get swollen glands.  I emailed both my Onc and my regular dr. and they said if I am sick I shouldn't be concerned.  I guess I will just keep an eye on it.  Have a great Monday.  It is beautiful in California today.

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011

    BRCA Mutations Common in Triple-Negative Breast Cancer

    Elsevier Global Medical News. 2010 Sept 30, K Wachter

    The incidence of BRCA mutations in women with triple-negative breast cancer appears to be greater than previously thought, which may have important screening and treatment implications. In all, 20% of unselected patients with triple-negative breast cancer had BRCA mutations in a small study of 77 patients. Surprisingly, the mutations were associated with significantly better recurrence-free survival and a trend toward better survival.The study obtained DNA from tumor and normal tissue samples that had been taken from each of 77 patients with triple-negative breast cancer. The samples had been stored in a tissue bank.The researchers sequenced BRCA1/2 exons and flanking regions, and patients were classified as having mutant or wild-type BRCA1/2. Sequencing was performed on both tumor and normal tissue to differentiate the mutations as either germline or somatic.In all, 15 of 77 patients (20%) had BRCA mutations (BRCA1 mutations, 12 patients; BRCA2 mutations, 3 patients). All but one (a BRCA1 mutation) were germline mutations found in both normal and tumor cells. Six of 14 germline mutation carriers and the one somatic BRCA1 mutation carrier had not been referred for genetic analysis. Nine of the 14 germline mutation carriers had no first-degree family history of breast or ovarian cancer.A rate of "almost 20% mutations in an unselected population is quite high," said Dr. Gonzalez-Angulo of the department of breast medical oncology at the University of Texas M.D. Anderson Cancer Center in Houston. "So I think that we probably have to start lowering our [threshold] for at least sending these patients for genetic counseling," she said.Dr. Jennifer C. Obel, moderator of the press briefing, agreed. "We have long known that women with BRCA mutations develop triple-negative breast cancer at a higher rate. Researchers in this study asked the flip side of the question. They found that women with triple-negative breast cancer have BRCA mutations more frequently than expected," she said."We may need to consider offering genetic testing to more of these patients in order to better screen them for more BRCA-associated malignancies, and to extend testing for their family members, who may also be at risk," said Dr. Obel, a medical oncologist at Northshore University Health System and a clinical faculty member at the University of Chicago.If the findings are replicated, they may have treatment implications for triple-negative breast cancer patients.BRCA is a DNA-repair enzyme. "So tumors that have BRCA mutations are basically very, very sensitive to agents that damage DNA," said Dr. Gonzalez-Angulo. Although there are conventional chemotherapy drugs to consider, newer investigational agents - such as PARP (ADP ribose polymerase) inhibitors - are particularly promising. Several of these agents are under investigation in clinical trials, with promising early results reported so far in breast and ovarian cancers.BRCA1 or 2 mutations can cause errors in DNA repair that lead to breast cancer. Basically PARP-inhibiting drugs block PARP from compensating for the loss of BRCA function and from repairing DNA damage. With no functioning repair mechanism in place, the cell dies in a process called synthetic lethality."It may become important to identify women with these mutations because the mutation provides a rational target for treatment with PARP inhibitors - a class of drugs currently under development," said Dr. Obel.That BRCA mutations were associated with better survival outcomes was a surprise to the investigators. Over a median follow-up of 43 months, there were 33 recurrences and 35 deaths in the study population. The estimated 5-year recurrence-free survival rates were 51.7% for patients with wild-type BRCA 1/2 vs. 82.6% for patients with a BRCA mutation. This difference was significant.The estimated 5-year overall survival rates were 52.8% for patients with the wild-type gene, compared with 73.3% for patients with BRCA mutations. This difference was not significant, however.Disclosures: Three of the study authors reported significant financial relationships with Myriad Genetics Inc., a company that has a monopoly on molecular diagnostic testing for BRCA1 and 2.
  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011

    Age, Tumor Characteristics Predict Locoregional Failure After Neoadjuvant Breast Cancer Therapy

    Elsevier Global Medical News. 2010 Oct 4, H Splete

    NATIONAL HARBOR, Md. (EGMN) - Age 50 years or older, initial clinical tumor size greater than 5 cm, and pathologic tumor response to neoadjuvant chemotherapy were significant independent predictors of locoregional failure in women who underwent neoadjuvant chemotherapy in two large breast cancer trials.Investigators presented these results from a 10-year follow-up study of 2,961 patients in the National Surgical Adjuvant Breast and Bowel Project (NSABP) B-18 and NSABP B-27 trials at the 2010 Breast Cancer Symposium. Dr. Eleftherios P. Mamounas of Aultman Hospital in Canton, Ohio, and his colleagues reported the 10-year incidence of local or regional failure based on type of surgery was 12.3% in patients who had mastectomies and 10.3% in those who had lumpectomies plus chemotherapy. The incidence of local failure was 8.9% in the mastectomy group and 8.1% in the lumpectomy plus chemotherapy group. The incidence of regional failure was 3.4% and 2.2%, respectively.In a multivariate analysis based on 318 locoregional failure events in all 2,961 patients, the overall significant predictors of locoregional failure included age 50 years or older (hazard ratio 0.79, P = .04), clinical tumor size greater than 5 cm (HR 1.52, P = .0005), and positive clinical nodal status (HR 1.64, P less than .0001). In addition, being node negative without pathologic complete response (HR 1.65, P less than .001) or node positive with pathologic complete response (HR 2.77, P less than 0.001) were significant predictors as well.The lack of data on predictors of locoregional failure after neoadjuvant chemotherapy has raised questions about whether to use radiation therapy and when to perform sentinel node biopsies in these patients, said Dr. Mamounas.He also presented data on locoregional failure in lumpectomy patients and mastectomy patients separately, for the purpose of developing separate treatment nomograms for each procedure. A majority of the locoregional failures in the lumpectomy patients were in-breast recurrences. In mastectomy patients, rates of chest wall recurrence were inversely correlated to pathologic nodal response, Dr. Mamounas said. "The effect of age (in lumpectomy patients), clinical tumor size (in mastectomy patients), and clinical nodal status at locoregional failure appears to diminish with increasing pathologic response in the breast and axillary nodes," said Dr. Mamounas. The neoadjuvant chemotherapy regimens were one of two: doxorubicin (Adriamycin) and cyclophosphamide (AC) for four cycles, or the AC regimen for four cycles followed by four cycles of neoadjuvant/adjuvant docetaxel (Taxotere). Patients in the B-27 trial received tamoxifen in addition to their neoadjuvant chemotherapy. Lumpectomy patients were treated with radiation, but mastectomy patients were not.The independent predictors were incorporated into two nomograms: one for mastectomy and one for lumpectomy plus breast radiation, Dr. Mamounas explained. Additional studies are planned to include treatment effects in the development and validation of the nomograms, he said. Dr. Mamounas disclosed serving as a consultant for Eli Lilly & Co. and receiving honoraria from AstraZeneca and Sanofi-Aventis.
  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011

    PARP Inhibitor Adds Nearly 5 Months to Breast Cancer Survival

    Elsevier Global Medical News. 2010 Oct 11, P Wendling

    MILAN (EGMN) - Final results from an open-label phase II study confirm the survival advantage of adding an investigational PARP inhibitor to gemcitabine and carboplatin chemotherapy in metastatic triple-negative breast cancer.Although not a prespecified outcome, median overall survival increased from 7.7 months to 12.3 months (hazard ratio, 0.57; P = .014,), lead author Dr. Joyce O'Shaughnessy reported in a late-breaking abstract at the the annual congress of the European Society for Medical Oncology. Median survival in this aggressive form of breast cancer is about 13 months after developing metastases.Progression-free survival also increased significantly from a median of 3.6 months with gemcitabine (Gemzar) and carboplatin alone to 5.9 months with the addition of iniparib, a poly (adenosine diphosphate-ribose) polymerase-1 (PARP1) inhibitor also known as BSI-201 (HR, 0.59; P =.012).The clinical benefit rate rose as well from 33.9% in the chemotherapy-alone arm to 55.7% in the iniparib arm (P = .015). This seemed to be driven by the overall response rate, which was 32.3% with chemotherapy alone and 52.5% with the addition of iniparib (P = .023). The clinical benefit rate (complete or partial response or stable disease for at least 6 months) was a coprimary end point with safety and tolerability.Thirty of the 62 patients in the gemcitabine-carboplatin arm crossed over to receive iniparib plus chemotherapy. An unconfirmed partial response was reported in 1, stable disease in 4, and progressive disease in 18, while 7 were not evaluable.The study's rationale was that inhibiting PARP, an enzyme that helps the cell to repair DNA damage, would enhance the effectiveness of chemotherapy damaging DNA. Dr. O'Shaughnessy reported on 123 women with estrogen receptor-, progesterone receptor- and HER2-negative breast cancer and a median of three metastatic sites who had received not more than two prior cytotoxic regimens. Of these, 62 were randomized to gemcitabine 1,000 mg/m² IV and carboplatin (AUC = 2) IV on days 1 and 8 every 3 weeks, and 61 to the same regimen plus iniparib 5.6 mg/kg IV on days 1, 4, 8, and 11.In a special PARP symposium at the meeting, chair Dr. Johann de Bono of the Royal Marsden Hospital and Institute of Cancer Research in Sutton, England, took issue with the study's dosing. "I'm concerned that it was an insufficient dose of carboplatin in the control arm; was that the right dose to do - maybe. [But] was it even ethical?" he asked. "I think that's a real key issue."When this concern was raised during the discussion of the study, Dr. O'Shaughnessy said they didn't know for sure whether carboplatin AUC 5 or 6 given every 3 weeks in metastatic breast cancer would be superior. Indirect evidence from two phase II trials in unselected breast cancer patients showed response rates of 30% with carboplatin AUC 5 given every 3 weeks and with AUC 2.5 given every other week with gemcitabine 1,500 mg/m². "When we gave 2.5 every other week, after about two [to] three cycles, patients went down on their AUC to 2; that's why we choose 2 as opposed to 2.5," she said. "We couldn't get the 2.5 in consistently."Invited discussant Dr. Richard Bell of the Andrew Love Cancer Centre in Geelong, Australia, said the difference in progression-free survival between study arms is clinically meaningful, but urged caution as the outcomes were investigator reported and other enthusiastically received phase II trials have fallen short in phase III evaluation."The big issue is would this work in other breast cancer types or in other cancer types," he said.A confirmatory phase III trial using the same schema has completed enrollment of 500 patients with triple-negative breast cancer, including women with BRCA mutations, said Dr. O'Shaughnessy. She noted that a recent study from M.D. Anderson Cancer Center found that 20% of 77 unselected triple-negative breast cancer patients carried a BRCA1/2 mutation. Predictive biomarker evaluation is underway to identify subsets of triple-negative breast cancer patients likely to benefit from iniparib. Preoperative and adjuvant trials of iniparib in this setting are planned. Iniparib is also being studied in phase II and III trials in ovarian, uterine, and brain tumors.Dr. Bell expressed surprise at the lack of toxicity reported with the addition of iniparib to chemotherapy. Although there is great excitement over the use of PARP inhibitors, with no less than 49 trials now in various stages, most have the potential to enhance toxicity, particularly hematologic toxicity, when used in combination with other drugs.Iniparib was well tolerated and did not potentiate the toxicities of gemcitabine and carboplatin, said Dr. O'Shaughnessy of the Baylor Sammons Cancer Center in Dallas. Grade 3 or 4 adverse events, mainly hematologic toxicity, were similar at 81% in the chemotherapy alone arm and 86% in the iniparib arm.Grade 4 neutropenia occurred in 16 patients in each group; grade 4 thrombocytopenia in 10 in the chemotherapy group vs. 11 in the iniparib group. There were no grade 4 anemia or leukopenia events in either arm.Two deaths occurred with chemotherapy alone vs. three with iniparib, all due to disease progression, Dr. O'Shaughnessy said. In all, 14% in the iniparib group and 27% in the chemotherapy alone group discontinued treatment because of adverse events. Dose reductions were similar between study arms.Dr. O'Shaughnessy reported no conflicts of interest. Several coinvestigators are employees of study sponsor Bipar Sciences Inc., which is developing iniparib with its parent company, Sanofi-Aventis.
  • navymom
    navymom Member Posts: 842
    edited November 2010

    Thanks for info, Heidi.  Always good to know that there are so many active studies for BC in general and TNs specifically.

    Navy

  • laurajane
    laurajane Member Posts: 305
    edited November 2010

    Thanks Hiedi- I'll be seeing a specialist at SK Nov. 23. I'm sure that will be mentioned. Also thanks for all of the info.

    MBJ- Hope you feel better soon. Congrats on great check-up.

    I hope everyone had a great day. The best thing that happened to me today was getting my final drain removed. Still was at about 35ML's but BS said he had to remove it today because my tissues were growing around the drains after 4 1/2 weeks after surgery. Ouch!! Is all I could say. Well there was a couple of moans and groans too. (Not the good ones, LOL) But and I say BUT! I got the 'script after and bought my new bra and falsy. I can wear a t-shirt tomorrow if I want to. Yeah!!! 

  • Swanny
    Swanny Member Posts: 118
    edited November 2010

    T-shirt?  How warm is it down there?  Too cold in Chicago for T-shirts.  Have a great day everyone.

  • Titan
    Titan Member Posts: 1,313
    edited November 2010

    Ok..I'm stupid..what is locoregional failure?

  • sugar77
    sugar77 Member Posts: 1,328
    edited November 2010

    Hi Titan - I believe that would be local/regional recurrence but not distant recurrence.

    Heidi - thanks for posting the information pieces.

    I hope everyone is having a nice day.

  • cmksocal
    cmksocal Member Posts: 163
    edited November 2010

    Swanny -- it was high 70's to low 80's depending where you were in the LA area.  November is a great time to be in LA.

    Colleen (native Wisconsite who now believes it is better to shake than shovel).

  • mitymuffin
    mitymuffin Member Posts: 242
    edited November 2010

    Has anyone been prescribed Zometa? When I went for a check up with an oncologist at MSK she said "We are not to the point of recommending Zometa to everyone, but we are prescribing it for many patients. Talk with your local oncologist about it."  I did talk with my local Onc, with whom I've done the chemotherapy, and he said he was willing to prescribe it for my Osteopenia, but not my breast cancer. He did not feel it should be used for breast cancer except in the case of mets.  We left it hanging, as I know there are significant side effects to Zometa and I wanted to give this some thought. I've been on Fosomax for Osteopenia for years, and could transition to  the IV Zometa.  The MSK onc seemed to think it had preventative benefits that made it worth consideration for Stage 2 patients. 

    Have any of you discussed Zometa with your doctors? Or do you have information about this?

  • chinablue
    chinablue Member Posts: 31
    edited November 2010

    I am currently part of a Zometa clinical trial where I am recieving regular infusions.

  • mitymuffin
    mitymuffin Member Posts: 242
    edited November 2010

    Hey Chinablue. Are you in the S0307 trial? Please, are you taking Zometa, and if so, how often and do you have side effects? (Of course, only answer if you feel like sharing the information.)

  • MicheleS
    MicheleS Member Posts: 196
    edited November 2010

    hi everyone!!! been really busy but I think of you all often!!

     xxoo

  • MBJ
    MBJ Member Posts: 3,671
    edited November 2010

    Michele:  Great to hear from you.  Hope you are doing well!

    Heidi:  Thanks for all of the info on Parps.  I hope that this helps those that need it.  Good to know there are being more studies done.

  • MBJ
    MBJ Member Posts: 3,671
    edited November 2010

    Teka:  Congratulations!  You're almost there!

  • MicheleS
    MicheleS Member Posts: 196
    edited November 2010

    teka-  vicodin makes me throw up. bleck.  glad you are on the home stretch.

  • Titan
    Titan Member Posts: 1,313
    edited November 2010

    Never took any pain meds either..thought a glass of wine was much better...plus it was more "social"..if you know what I mean.

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