Calling all TNs
Comments
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Suze, Have a wonderful trip and feel at peace.0
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Wanted to share a sweet moment. My 6yr old daughter slipped me a love note before she went to bed, it read, "From Heaven to mom I hope you get well and more happy living." So sweet, so glad I had daughters, they can be so sweet.
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Maggie (Mags20487) - thanks for the link to the tnbc foundation's site. I found that one a couple of days ago. I'm doing a lot of reading (probably more than I should have because I'm starting to freak myself out).
I have a few of my appointments scheduled so I'm feeling a little more in control - genetic testing on 12/30. Med Oncologist on 1/4 and Radiation oncologist on 1/9.
I've had about all the cancer I can take for one day...need to do some non-cancer stuff, like wrapping Christmas presents!
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Susan,
Have a great trip and fantastic holiday! I'm glad you are feeling better.
Love,
C
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TifJ - Thanks so much for your encouraging post and good wishes. You are all such awesome women, and I'm so grateful for all the feedback I've received from you. It's great to feel understood. I might have to come out of hiding (lurking) for good!0
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Suze and Luah enjoy your trip!
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Ya know..Hope..if "they" are thinking "it" is probably fat..it probably is..fat is a good thing lol...of course having BC we usually tend to think the worse possible scenario..of course we do..we have had the worse possible scenario...but sometimes...things do turn out to be just fat...let's hang on to that ok..
Suze..have FUN on your trip...are you really going to NYC..I know you like it there..to buy shoes?
Christmas is getting close isn't it...??? MERRY CHRISTMAS TO ALL OF YOU..love you ladies..couldn't get through this without you all...
Hey Char..come on over and wrap some gifts with me...we can eat chocolate and drink some wine..sound fun?
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Merry Christmas to all. Those who are going away...have a great time and everyone enjoy time with your families.
Heidi - great news of the good check up.
My email was hacked so I've spent the better part of the day changing passwords everywhere and resetting my BlackBerry, etc. Lots of fun
Any of you who are FB friends with me or who I correspond with via email, please disregard if you received an unsual email from me today.Good night ladies!
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Susan-I am so glad you are feeling better! Go have a cancer free holiday!
Christina and Riley-Are both of you weakly er positive? I am a bit forgetful! My mo does want to put me on tomaxifen (sp?) with 3% er positive. Not sure I want to do this. I could go get a second opinion, but if they disagree then I will have to get a third opinion. I do trust my mo and probably trust him more than most docs so I don't know who to go to for a second opinion. WHat did you find with your research? I have a bit of time to think about it because I still have to do radiation.
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bak, I'm 8% ER+ and IIRC, they told me that anyone over 3% should take Tamoxifen or AIs. I wasn't convinced it would be worth it, and I'm still not sure that it was. I was switched from Tamoxifen to Aromasin after 11 mos, but I was already having troubling SEs, like my blood lipids going up even with 2 cholesterol meds added, which led to the development of fatty liver disease, which puts me at a higher risk for developing heart disease and/or diabetes. And I've gained 30 lbs that seems to be concrete-welded to my mid-section.
I'm going to hope Aromasin doesn't turn out to be just as bad. I'd like to be able to start working on fixing these problems, but we shall see. I know not everyone has the same experience with Tamoxifen, but just know it might be a possibility, and that should factor into your decision. Good luck!
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Bak - I am 3% ER positive and not taking an AI. There was no discussion about AIs with my oncologist this time (Dana Farber). I took Femara between 8/2010 and 3/2011 (my MO in Kansas City prescribed it) and it did nothing as i had a recurrence or leftovers and progression to several nodes. I didn't gain any weight while on Femara and tolerated the drug without any noticeable side effects. It just did nothing for me.
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Bak, I am 5-10% ER receptors staining with moderate intensity. There is a measure that includes both the percentage of cells staining as well as the intensity of the staining - the Allred score for ER positivity. If the Allred score is above 2 (I think it is 2), then there is a correlation between taking tamoxifen or an AI and a better outcome. I think my Allred score is 4. If you go to the mixed breast cancer topic, there is a post i started called ER+PR-Her2-. Someone posted a lot of articles in that thread that pertain to Er+PR- - you might want to read through them and see what you can find. I went to three oncologists overall - my local, Vanderbilt, and UNC Lineberger. My local and UNC lineberger oncs are optimistic about the tamoxifen helping to prevent recurrence, but the Vanderbilt onc said to take it, but if I had side effects that I could come off because she didn't think that it would do very much as at best I have 10% receptors- that my cancer would "behave more like a triple negative." I was on Arimidex for one month and did not gain weight, lost a little sleep the first week, and had some joint pain (but I have worse now on nothing but chemo). I hope I will tolerate the tamoxifen well. I am nervous about taking it. I will try to find the Allred info and post it over the next few days. Sorry so choppy, I am half awake. And I was RCBIII (recurrence risk high due to residual tumor burden and 2 nodes following neo chemo.)
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Sugar77-your profile picture looks great!
Happy Holidays everyone!!
Lauh & Suze, enjoy your time off. You guys deserve it!
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Titan - you are right...I'm hanging on to the fat.....lol. Biopsy not till Jan 6 and I'm going to try to put it out of my mind if I can and enjoy the holidays. Happy Holidays to you and everyone on this board!
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Michelle- did Dr. Monaghan prescribe the Femara? I am 3%+ as well and he told me no. He said the side effects would outweigh the benefits for only 3%.
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Ok, time to vent, my DH is so annoying, he nags at me about what to eat and what not to eat, then he goes and eats what I can't eat right in front of me, ughhhhhhhhhhhh, so annoying! Why r there so much diet restrictions!!!
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naan - totally understand. My husband is really good at doing the same thing. I try to remember there aren't really a lot of diet "restricting" just diet "choices". I'm trying very hard to get into telling myself how much better I will feel by eating my fruit for dessert instead of the ice cream hubby's shoveling in. Sometimes it works.
I made a really good fruit smoothie last night. Banana, strawberries, no sugar added vanilla yogart, FF milk, ice and a couple of Truvia packets. Really good. Felt like I was cheating. I have a terrible sweet tooth.
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Heather,
Your babies are soooo cute!!! I don't have any Christmas hats for mine this year - but I think I have some elf ears somewhere from a past Christmas. I'll have to take some photos.
Your smoothy sounds delicious! I too have a terrible sweet tooth. I do not feel I have done very well avoiding sweets since diagnosis although I have cut down but I plan to do even better after I am finished with this chemo trial.
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Titan - chocolate and wine sound wonderful! I have some of both in the cupbard (my bestie got me organic chocolate and it is delish!!)
Wrapping is getting done, but not fast enough. Yesterday was just such an awful day. I had enough cancer stuff for one day, that after I took my DS Christmas Shopping (our 3 year tradition that is going to last until he's 60 and I'm 93 - LOL), I put on my jammies, crawled in to bed and watched some mind numbing TV for a couple of hours.
Thanks to everyone for posting...I'm encouraged more each day and I really feel like I've connected with this group!
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naan1004 - your post made me tear up - what a sweet daughter you have!0
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To all of you wonderfully supportive sisters -- just got a call from my ONC -- MY PETSCAN FROM THIS MORNING IS CLEAR! No explanation for the raised ALP but who cares! Thank you so much for the kind thoughts and prayers ... Best Christmas gift ever!
Happy holidays to you all,
Kathy0 -
Titan -- looks like you should be planning a trip to Vegas! You said you were a betting woman and you were right! Let me know and I'll meet you there
Kathy0 -
KATHY!!!!!!! WOOOOO HOOOOOOO! You have yourself a fantastic Christmas.
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TifJ - yes, Monaghan prescribed it. It's interesting that he now says the side effects are not worth it if you are low ER+. His exact words to me were "positive is positive." Ask him to give you Metformin, and if he says no, ask your PCP. It may be a better answer for TNs.
KSteve - congratulations! I cried tears of joy when I got that call from my RO!
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Hallelujah Kathy!!!
Michelle- forgive my ignorance, but what is the Metformin for? I see him next week, and ask him what his current take on Femara or Tamoxifen is!!
Just finished making and decorating sugar cookies and dove chocolates w/caramel on pretzels. The kids are great little helpers- there is frosting ALL over my kitchen table!!
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ksteve yeah!!!!!!!!!!!!!!!!
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TifJ - there are ongoing clinical trials to determine if metformin is effective to prevent recurrences. I told Monaghan about this last June but he completely discounted the notion. At the time the clinical trials were just in Canada, now they are all over the US.
http://www.clinicaltrials.gov/ct2/results?term=metformin+and+breast+cancer
http://www.clinicaltrials.gov/ct2/show/NCT01101438?term=metformin+and+breast+cancer&rank=6 is recruiting in Kansas at
Kansas City CCOP. This trial is also being conducted in almost every major cancer center in the country. I don't think he can ignore it any longer.
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Yay Kathy! I'm off to buy a lottery ticket..though your WIN was enough for me...!
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I posted this in another thread but I think I was in the wrong place so I've posted again here. My Mom has just been diagnosed and I have questions. Her oncotype DX came back at 59. First alarm bell. Her gene reports were ER less than 3.7 (negative), PR less than 3.2 (negative), HER2 8.4 (negative according to their scale - the negative cut off is less than 10.7). Her doctors seemed surprised by these results.
I am assuming this means my Mom is TN? She had her CATscans and echocardiogram today. She was on radiation therapy (X8 treatments) but that was discontinued yesterday when they received her results. She has been told she will need to start on Chemo. Her appt. with the oncologist is next Wednesday.
My Mom is 76 but very active and healthy. She had surgery and radiation for DCIS about 4 years ago. The new tumour was in exactly the same place as the first one.
I am trying to educate myself so I am able to offer the best support. I live in Canada and my parents are in Florida. I am a nurse and I'm trying to decide if I should fly to Florida next week to be with my Mom when she receives her diagnosis and treatment recommendations. Would it be better for me to spend time with her once she is having her chemo?
I know so very little about breast cancer and especially TN. Any advice would be really appreciated.
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Fantastic news, Kathy!!! You got your Chrismas Miracle!! Have a wonderful, wonderful holiday.0
