Sisterhood of the Secret Handshake

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  • j414
    j414 Member Posts: 321
    edited November 2009

    Rachel, I don't think tumor markers are given at diagnosis of early BC b/c the enzymes that are measured usually only elevate when the cancer is advanced or metastasized. My onc said if my enzymes came back slightly elevated, then we would retest in 3 months and if they were still elevated (after three months), then we would do scans. On the other hand, if my enzymes showed a significant increase, then we would do scans immediately.  He said it was my choice to take the tumor markers now or wait three months and I opted to just take them - if anything is going on, I would rather know than not know.

    http://www.labtestsonline.org/understanding/analytes/ca15_3/test.html
    http://www.dslrf.org/mwh/content.asp?L2=2&L3=8&SID=132&CID=591&PID=0
    http://www.breastcancer.org/symptoms/testing/types/blood_marker.jsp

    CA-125 test, on the the other hand, is considered to be a lot more sensitive and accurate in detecting OC and other malignant and benign conditions (e.g. endometritis, a possible precursor to OC). I have a family history of OC (aunt stage 1 at 26 (one ovary removed) then stage iv at 39 (from the remaining ovary) and all the aunts had endometritis, so I am taking the CA-125 every 6 months.  

    I took the CYP2D6 test last week, should be getting the results in a couple of days. I'm not having hot flashes, but I am having very mild SEs - so hopfully I'm metabolizing well. But if I'm not, then we will increase the dose, switch to something else - I'm not really worried b/c I know it can be managed. I just really want confirmation that my my cyp gene is working as it should be and  if confirmation will also give you peace of mind, then you should take the test too.

    Good luck with your LL, they all suck. Play hardball, you're a reliable tenant and that gives you the upperhand.  And excellent letter to the stepsister - hopefully it will muzzle her!

    Chelev, good luck with the MRI - sending prayers your way.

  • GramE
    GramE Member Posts: 5,056
    edited November 2009

    You could try this when asked personal questions:  " Why (name of person), thank you SO MUCH for asking."   Then immediately shift it back to them or change the subject completely - How about the forecast for a nasty/nice weekend...   or, what a pretty blouse, pair of shoes - where did you get it?   Women usually love to discuss clothes and bargains.    

  • pclarky
    pclarky Member Posts: 37
    edited November 2009

    Yes, I did get antibiotics - generic Cipro, and started them right away.  All started Wednesday afternoon, and I felt pretty much myself again by Friday, as far as flu-like symptoms go.   But, the dang breast is still red (maybe not QUITE as much as it was) and swollen.  Post rads, it became a little shadow of its former self, so when it gets big, it's noticible.  The Onc also told me to take advil.  I was soldiering on without it at first, then - duh - realized it's for the swelling.  So, I'm taking 'em again.  I think it's getting better.  I WANT it to get better.  Nervous about where the ** it came from - no idea.  Seems like I read once it happens, it's more likely to happen again.  SFBC.

  • Mary22
    Mary22 Member Posts: 779
    edited November 2009

    OK So I am cheating, I missed a few days and I only skimmed over the older posts. Sounds like everyone is doing good.

    Debbie S Welcome, we are all twisted. If you have any questions about tx just ask, everyone here is very well informed. If not Rachel, will google an answer and wil not stop until she finds it.

    Playdate???? I have three older kids that will help with the younger kids at the playdate!!!

    Well Happy Monday~!

  • LittleRed
    LittleRed Member Posts: 223
    edited November 2009

    Rachel_BC:  Good guess!  In my former 'hair life' I was strawberry blond - LittleRed came from that and the little red hen story...but I do think of the song, too.

    So Ladies, it seems strawberry blond is the winner - so far.  I remember you all discussing that coloring chemo hair can be difficult, so I may reach out to ask Joseph about it.  So many are so happy with his work :-)

    So pbk143 and everyone can see the 'face between the ears', I will try to add a pic, but I have to figure out how - all my pics are on my computer, not a URL...it's easy to load an avatar, but into a post...? 

         On a dog training side note - did you ever see ‘The Accidental Tourist'?

    I like your letter, Rachel!  Too often people take advantage of the ‘family dinner'.  Hopefully, she will ease off and that will reduce the stress for you (and probably everyone else).  (‘The Accidental Tourist' had some really good family dinner scenes, too!)

    I understand how tired you can get.  I don't take Xanax, I'm a Lexapro girl myself.  But, yesterday I was still getting over my cold, so I was lying down, and talking to a friend on the phone - next thing I knew I had nodded right off. Gonzo...Bye-bye...nighty-night!  My girlfriend laughed, but I felt REALLY bad.  No, it's not the conversation - it's me.  Zzzzzzzzzz...

    Oh, and by the way ...(what happens when you play country music backwards?  You get your house back, you get your wife back, you get your dawg back...)...  LOL!!  My girlfriend keeps telling me to stop listening to country music because it's too depressing - she says if I get teary I am NOT allowed to tune in.  HA!  I'll just tell her I'm playing it backwards!

    Everyone helping Rachel with the notes for the cookies - you deserve a big pat on the back!  Brava!!

    chelev:  Oh...you must be so upset about the no follow up.  It's got to be very stressful.  And on top of the T&A issues:  NOT FAIR!!

    NOT FAIR for any of you Ladies:  Like you haven't been through enough - you have added T&A issues!  Wish I could send all of you a big vat of my mom's chicken soup!!  Instead, I will have to settle for sending you positive thoughts and prayers for relief, peace, and comfort!

    J414:  Thanks for including those test links!

    Be good to you -

  • pkb143
    pkb143 Member Posts: 280
    edited November 2009

    Funny, I was thinking of that Led Zeppelin song, too, and wondering why they called it "Black Dog."  Of course, I Googled it and it just so happened that a black lab frequently wandered around the recording studio.....the lyrics have nothing to do with the title (hey, it was the '70's, man). But Rach, I'd bet Led Zeppelin would get a kick out of someone comparing it to a country song.

    Hope all the boobs are better today! It just hurts to think about that....let alone experience it.

    It turned cold here today and they're even talking snowflakes!! Good grief, we haven't even had a hard freeze yet....

    OK, have to get busy and grade multiple choice test questions for DH......

  • pkb143
    pkb143 Member Posts: 280
    edited November 2009

    LittleRed, wish I could give you some helpful advice on posting that pic but I'm still figuring out how to copy and paste here on this site using Firefox. Seems like you have to go and modify some files bigtime in order to do that and it appears to be unique to this site. Talk about a PITA!!

    Yes, I've seen Accidental Tourist ..... a long, long time ago......!!  Wasn't Andie McDowell in that??

  • LittleRed
    LittleRed Member Posts: 223
    edited November 2009

    pkb143:

    You're thinking Gina Davis opposite William Hurt.  Hurt hires Davis to train the family dog.

    I'll keep working on the pic - I can always winp out and just change my avatar.  That much i know I can do...

    Be good to you -

  • pkb143
    pkb143 Member Posts: 280
    edited November 2009

    oh yeah -- Gina Davis!!  Andie McDowell was in "Michael."

    thanks and you too!

    **you may have to upload your pics to a photo hosting site, like Photobucket, and then copy/paste the html code or actual URL.

  • LittleRed
    LittleRed Member Posts: 223
    edited November 2009

    It keeps coming up twins...?  At least in the preview...?

    LRpic1" mce_src="LRpic1" alt="" border="" hspace="" vspace="" width="" height="" align="" />

  • LeggyJ
    LeggyJ Member Posts: 726
    edited November 2009

    Hey Rachel,

    Thanks for the Led Zep you tube.  Loved it man!  They were my favorite band, back in the day.  I went to their last concert together, at "A Day on The Green"  in the city.  Robert Plant learned that day that his son died, needless to say it wasn't their best concert.  But I can say I saw Led Zeppelin in concert...Still have the ticket. 

    Crystal, it's OK to talk about poop, just ask Rachel about farting.  That was so funny!  I grew up with brother's and my brother came to my room one time, like he wanted to talk.  He let out this huge fart, really smelly one, ran out the door and held it closed, so I couldn't get out. Boy's.

  • LittleRed
    LittleRed Member Posts: 223
    edited November 2009

    I figured out how to post a pic!!

    LRpic1

    One month before dx - February 2009

  • pkb143
    pkb143 Member Posts: 280
    edited November 2009

    OMG, you're gorgeous!! I don't think it matters what color that hair is!  Smile

    **but how could your hair possibly be coming in gray?? You look like you're about 30 MAX.

  • LeggyJ
    LeggyJ Member Posts: 726
    edited November 2009

    Your beautiful Little Red!!!  I vote blond. Just like your picture.

  • BooBee
    BooBee Member Posts: 860
    edited November 2009

    Patty......this year has been all about me me, me, me, me, me, me, me and oh yes, Moa.  I don't know about the rest of you but after the DR told me I had cancer, my mind was incapable of functioning.  A feeling I don't ever want to revisit again.  I still use his salad dressing so I figured he was still alive.  How's that for a theory?  Laughing

    Rachel....family and the holidays.  Let the games begin or should I say fireworks?  FIL died two years ago leaving 4 girls and my DH.  He once played for Ohio State in the mid 50's wining the national championship at the Rose Bowl.  After the funeral one of his sisters walked away with a framed jersey.   Yes, that would be the sister that caused drama at every family function we've ever had.  The first thing I told my daughter after telling her I had cancer was to make sure dad got the jersey back if I died.  I think I may have scared the sh!t out of her. 

    She has promised to return it but had "complications" after her mastectomy.  She has the BRCA 1 mutation.  She's had "complications" for the past two years now.  CAAAARMAAAAAA!!!!!  Needless to say, she is no longer welcome to family functions.  No one speaks to her at all.  We have had some of the best holidays since. 

    This is still my number one, and only, item on my bucket list. 

    LittlerRed......You are beautiful!!!  I like that hair color.

  • hrf
    hrf Member Posts: 3,225
    edited November 2009

    Little Red, you are a beautiful woman. Whether your hair is long or short, blond or red, you will still turn heads. Stay strong.

  • GramE
    GramE Member Posts: 5,056
    edited November 2009

    http://www.comcast.net/articles/news-general/20091116/US.MED.Mammogram.Advice/

    Please, please read this article.  Then go to the Sign up to protest thread started by Moderator Melissa.  This is un - fricking - be lievable....     

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited November 2009

    Just a drive by- haven't even caught up with posts- face into the wind, faking it til I make it, I actually feel pretty good in advance of the big lawyer call.  I wimped on the meeting with the landlord (actually the landlord's minion) and ended up more pleading than demanding and they'll get back to me, got some fun pics from the cookie place, and Patty B part deux you shouldn't have (I'll explain later) fighting feels better than letting them roll over me... J414- I should have remembered your family history, I kept looking at your DX line and wondering why your TX was so much different than mine- THANK YOU for all the fab info, I am still learning... meanwhile the family has changed Thanksgiving plans again and again... and I am now off to find a restaurant for us...

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited November 2009

    Another drive-by post, my father sent this to me

    Breast-Screening Advice Is Upended

    New guidelines say routine mammograms aren't necessary for women of average cancer risk in their 40s and tell physicians to abstain from teaching women how to examine their breasts for signs of cancer.

    • Breast Self-Examinations: What's Wrong With Them?

    • Readers React: 'Ladies, stay the course

     

    If that had been the case with me, I'd have missed my cancer until next year!

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited November 2009

    Oh I see now, Nancy posted the same info and here's a link to the sign up to protest thread:

    COME ON SISTERHOOD OF THE SECRET HANDSHAKE!!!! 

    Here's the petition thread:

    http://community.breastcancer.org/forum/110/topic/744011 

     check out this link for more info:http://www.breastcancer.org/opinion/mammography_guidelines.jsp **** Also, Dr. Marisa Weiss (Breastcancer.org President and Founder) is going head to head with Susan Love 11/17 on Good Morning America (8:00 a.m. EDT). Dr. Weiss will be defending the role of mammography for women between 40 and 50. ************Dr. Marisa Weiss

    Melissa Jenkins 

      

  • DebbieSawyer
    DebbieSawyer Member Posts: 133
    edited November 2009

    Good morning! What the heck is going on? I have alot to catch up on....what's this about mammogram changes?? (I'll read the links, you don't have to repost). I haven't been online, the weather here has been wonderful, cool sunny days, that I'm outside all day. My husband is on the computer in the evenings...working.....he claims.

    Rachel--OMG, you have got a lot on your plate. Hang in there and give 'em hell. You're a strong, independent woman. btw, since you asked, yesterday I got the oncotype: 17. Seems you and I have same dx (my tumor was 1.2cm). I don't have the paper report, was just told on the phone, so I don't know exactly what that means, except that no chemo for me---YIPPEE.

    I am way behind you on treatment, so can't comment on much of what you talk about, but I'm learning alot from you (about treatment...and other more important things!).

    LeggyJ--We have the same brother! My brother is still tormenting me with farts. He's 58! Johnny Depp once said something along the lines of "farts will always be funny, no matter what age you are". lol. Calistoga is a very cool town. Hey so what do the locals think about Joe Montana listing his 500 acre VACATION HOME, for $49 million? Sellsellsell!

    Chelev--how ya doing? How's the rear end issue?

    Hi ReneeS!

    j414--to answer your question several pages back, yes Chip lives with me, and three other horses, on my small ranch. Thank you for the compliment; he is beautiful!

    LittleRed--nice to meet you. You are a stunning woman, no matter with or without hair, or what hair color.

    Thankfully for Thanksgiving, I will be recuperating on the couch from a second lumpectomy (surgery is two days before), so won't be subjected to any family drama. And on my husband's side, there is always drama. Don't bring up politics or religion, 'cause an arguement will always break out and someone will always walk away pissed off. Actually that happens with just about any subject, doesn't have to be a hot bed topic. All type A personalities, and no one gives an inch. This year husband and I are staying home, no visitors, he cooks. Thank gawd.

    Led Zep's Black Dog is still playing in my head....

  • LittleRed
    LittleRed Member Posts: 223
    edited November 2009

    Ladies you are too kind - and Patty, I was 43 in that picture.  It was taken 2 months before my b-day.  As for the gray - the chemo hair came in white and the dark filled in behind it.  I had some gray originally, now whatever's coming in is lost in the mix - it is all 'salt & pepper' right now.  Go figure...

    Gotta sign the petition about the new BC screening "advice" and get back to work - see ya later...

  • pkb143
    pkb143 Member Posts: 280
    edited November 2009

    Well, LittleRed, come to think of it, a cancer diagnosis is enough to turn ANYONE's hair gray...not to mention all the treatment regimes doing a number on it. And I still think you're a knock-out!

    Rach, hang in there now, things are bound to get better! You're methodically crossing things off your list, so maybe that will help.....e.g., got the cookies on their way. Smile

    Great news on the "no chemo" test result, Debbie! that must be a huge relief.

    Renee, I hear ya! The diagnosis does give one tunnel vision for quite a while, but that's probably a necessity for survival.

    I signed the BC screening petition yesterday and posted a comment on my Facebook page saying that women should ignore the new mammography guidelines because they are ridiculous! and yep, my cancer would have been over 2 years old before discovery if the new guidelines had been in place. And most women are not going to get the screening any more often than what insurance will pay for.....Is this the new face of healthcare in America: Sure, 3% more women will die, but the money we save will outweigh that.  Well, here's my two-cents: If too many women are undergoing needless procedures that cost money and cause anxiety, then maybe we need new screening methods! 

  • ktym
    ktym Member Posts: 2,637
    edited November 2009

    Little Red,  you do look gorgeous.  You know we've looked at a few pictures of mine taken a little before my diagnosis and DH and I said to each other how did we not know something was wrong, I look terrible.  Sure the heck no one would ever say that looking at your picture

  • Mary22
    Mary22 Member Posts: 779
    edited November 2009

    Little Red You are a very beautiful woman, any hair color would be fine. Blonde may be easier to maintain. Good Luck. I was lucky, I escaped chemo.

    Rachel Keep up the hard work. You should have let me know about cards for our troops. I could have had my Sunday school class make some and coordinated something w/ my dd class at school. Even our Autistic kids could have made some really cool cards. PM me if you still need more.

    HELLO To All!!!!!! What a fun crazy bunch of ladies we are!!!!!!!

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited November 2009

    totally not caught up but fly by

    CONGRATULATIONS DEBBIE!!! They are probably going to ask you if you will volunteer for a study.  Those of us near the borderline are eligible for a study that randomly assigns some to do chemo anyway.  Double checking the efficacy of the Oncotype test.  I think those women who volunteer are incredibly brave!  I did not.  If you're going to run the same route as me, I will be DELIGHTED to help you :)  First stop, radiation.  Someone started a great thread here:

    If you knew then what you know now...

    and a bunch of us posted helpful hints.  I can help you with invisible tattoos, with avoiding having the beam hit your heart and lung and bones, with shorter courses of treatment (2 weeks instead of 6) and with care to hopefully avoid the troubles.  Second lumpectomy? Damn.  Brothers who fart- mine too! I gotta go back and read the posts I missed...

    Whoa- I missed Little Red's pics????

    I am HAPPY to tell you my black dog seems to have gone back to the kennel.  I think its fair to say I am no longer depressed.  Hello, that SUCKED.  It was just the shock of the lawsuit being dropped combined with my fear of losing my home and income.  More on that later but man it feels good to know I have what I need to make it through that - and I count you guys as a BIG part of that!  Also a little interesting for me to note that the intense stress did not cause hot flashes or other SEs.  I think i was tired because I was stressed, depressed and taking Xanax.

    OK gotta boogie, will catch up later, or at least try! 

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited November 2009

    Mary- I did, I posted here but I didn't want to lay it on too heavy.  Heck yeah, if you can do some cards that would ROCK.  Even if I have to send them separately, that would still be wonderful.  Will email you quick 

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited November 2009

    Good Golly Miss Molly- Little Red you're freaking cute as all get out!  Well I am glad I voted for strawberry blonde and again- call or email or PM Joseph, he will help you get back ... get back to where you once belonged... as fast as possible!

  • Mary22
    Mary22 Member Posts: 779
    edited November 2009

    It was probably one of those weeks when I barely posted and read everything quickly, then suffered from CRS!!!!!!!

    I will have to to try to get on BCO more often!!!! I have not even been on FB! And my family thinks that I have forgotten all about them, b/c I barely go on email either!!!!

  • LeggyJ
    LeggyJ Member Posts: 726
    edited November 2009

    Debbi, just think how many horses you could have, if you bought Joe Montana's little ranchette!  I met Joe when he first moved here, at the time I worked in the garden center dept. of a hardware store.  My boss, pushed towards Joe, to ask him if he needed any help.  He filled up lots of carts, and bought a huge grill, with all the fixings.  It was kind of fun, and he was so sweet.

    Little Red, my hair came in S&P, and curly.  So far I haven't colored it, and today, it has been one year since rads. Maybe after I get rid of the chemo. dry kinky hair, I'll color it.

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