Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Calling all TNs

Options
123571183

Comments

  • scooter-12
    scooter-12 Member Posts: 26,606
    edited May 2010
    Options

    cinnamon...always like to hear good news.  You go girl!!

    Anna

  • angelsabove
    angelsabove Member Posts: 39
    edited May 2010
    Options

    cinnaon..............THANKS for sharing!!!! 

  • fmakj
    fmakj Member Posts: 1,045
    edited May 2010
    Options

    I guess it is time for me to chime in!  I was diagnosed a month and a half before my 45th birthday.  I was denied Chemo - even though I questioned it and also got a 2nd opinion.  (So far, I think I am the only one here that has not had Chemo!)  Had a lumpectomy and SNB, 25 RADs and 5 Boosts.  I have just had my 1st follow up Mammogram (after a scare of other breast have just been given the all Clear).  See my RADs Onc every 6 months for 5 years as I am on a RADS study with him) and to have a clinical exam.  Will have a mammogram yearly and for right now will have an MRI yearly as I am on a high risk screening program due to family background.  1st MRI is scheduled for October.  Will be getting my BRCA results some time this month.  Great thread Titan!!

  • Charliebird
    Charliebird Member Posts: 8
    edited May 2010
    Options
    Thank you for taking the time to post, Cinnamonrocket---it helps so much to hear about people who have gotten through this and are doing well . . .especially as I am just beginning this journey and there is so much ahead of me to get through. HUGS to you!  Cool
  • Titan
    Titan Member Posts: 1,313
    edited May 2010
    Options

    Thanks cinnamonrocket (what a great name by the way)...good to hear from you.



    So fmakj....you rec'd two opinions on the chemo? Interesting....I see that your tumor was under 1 cm..is that the reason why? I have understood that sometimes, if your tumor is under 1 cm..chemo could be waived..was that their reasoning?



    Charliebird...let us know how things are going with your journey! We really do care...and it helps to sound off here...Alot of us..even though we have different se's from our treatments know how to help... my SIL was more of one to kinda lay back and take things easy...which was right for her..I was more of one to not take things easy and forced myself to keep the "norm"...it is all up to the individual...either way..it is the right way..do I make sense?

    What's everyone got going for them this week? chemo??? Mammos? Doctor's appts? Rads? Maybe a week off? I have the week off..yippee! See the onc on the 18th.... I'm preparing my list of questions now....You can really learn alot from coming on to BCO....!! I'm trying to get up the courage to ask for my pathology report from the lumpectomy one year ago..I'm trying to decide if I really need to read it..yet.....I know (from on here).that I had the strongest chemo available....do I really need to read this? I just don't want to freak out any more..than I already do..sometimes...



    Hope everyone had a good Mom's day....!!

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011
    Options

    Good to meet the newest folks.  Thanks for sharing, Cinnamon.  That is heartening.

    Summer, I hope you have an easy go of it.  I was fortunate to be able to continue working and doing many of the things I enjoy throughout chemo.  I wish you the same.  Of course, my house is a mess, but who cares?

    My tumor was small, too, and my onc presented chemo as an option for me to consider.  I didn't consider long.  I'm surprised that they denied it to you, Mary Louise, but, as Titan said, I wonder if it were the small size that was the issue.

  • Laurie_R
    Laurie_R Member Posts: 54
    edited May 2010
    Options

    just had my last chemo on Thursday the 6th.  Was a triple neg , but after reading the addinum on my ER, PR HER, it appeareas tha my ER is between a 1% and a 5% positive.  Don't know what that means for my future will be discussing it with my onc when I see him next

  • fmakj
    fmakj Member Posts: 1,045
    edited May 2010
    Options

    I was told that in my case the risk outweighed the benefits.  There were 2 tumours found amongst DCIS that together were still less than 1 cm.   I have decided to trust my medical team and if it shows it's head again, I hope to catch it as early!!       

  • gillyone
    gillyone Member Posts: 495
    edited May 2010
    Options

    Titan - I have a three monthly visit with the onc on Tuesday. One thing to discuss is getting de-ported. Ha - that sounds funny as I am not a US citizen (but I am here legally!!) I kinda look forward to onc visits or getting my port flushed, especially as I am not receiving any tx - all done with that. But I feel a bit deflated when there is nothing going on in the cancer fight.

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
    Options

    Hi everyone!

    Titan~ This week is relatively slow...  Just an appt with my counselor. Tongue out

  • violet7
    violet7 Member Posts: 22
    edited May 2010
    Options

    gillyone,  I know how you feel about feeling that nothing is being done.  I'm focusing on taking off the chemo weight (8 lbs so far) and exercising, dieting and exercising are supposed to help in the fight against cancer.  I'm not sure if it really is a factor or not, quite honestly, but it makes me feel good.  It's at least something I can do to be proactive.  I've also sat my butt down to meditate.  It takes discipline for me, but when I do it decreases the creeping level of terror I feel.  I just found a cyst near my masectomy scar and my body seems foreign to me right now.  I have my scan in June.  Meanwhile, I'm doing what I hope will lessen the odds of mets.  Cinnamonrocket,  great post.  I love those posts the best.  Besides standard treatment did you follow any other personal regimen?Retrievermom,  my house is still not up to par after chemo, which ended March 18th.  It's overwhelming.  I'm thinking I ought to take it one room at a time.

  • Charliebird
    Charliebird Member Posts: 8
    edited May 2010
    Options

    Plans for this week . . .6 mon. regular dental check-up today along with a pre-treatment echo, ekg, lab work (blood, urine), and a check of my vitals---especially blood pressure.  They didn't like what it was on the day I first met with my oncologist (wow---why would my bp have been high that day???  lol)  Hopefully, it will be better today.  I am on meds for bp, and I was reading that dangerously high bp is one of the likely side effects from the Bevacizumab (which is what I am hoping to get as part of the clinical trial, so that makes me a bit nervous).  Then onto my daughter's high school music (band and choir) concert tongiht and back to work tomorrow.  My son graduates from technical college this Sat. and my daughter will be marching with her high school band in a parade on Sun. Busy week!  Hugs to everyone . ..stay strong and hang in there!

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011
    Options

    My onc called today to tell me that after looking at my Cat scan and MRI he did not think my seizure was related to my cancer. He *did* say that mets was the first thing he feared though, and is glad we did not have to have the WBR talk.

    Does this mean I can start breathing again? Guess I'll have to re-bundle my fears and start over again...

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010
    Options

    Congratulations!  That's excellent news!

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
    Options

    Yes..Heidi..please start breathing again..that is kinda important.....and try to put it at the back of your mind..the memory will fade quickly....I'm sure...Your DH will probably treat you pretty special for awhile so you may as well enjoy it...I like it when my DH treats me like I'm precious....at least for awhile anyway....



    Looks like we are all pretty busy..fitting in the appts. when we can....that's a good thing..fitting them in as necessary and then going on to the next thing....



    Violet...how are you losing that weight? I have gained 20 lbs. in one year...I really don't like it at all..I do exercise and try to eat right....It kind of makes me mad that they told me to eat anything I wanted during chemo..I took that to heart and here I am 20 lbs more 8 months later. My metabolism always seemed to burn off the calories..but I think it has slowed down...and so have I...darn it..don't like that much.



    And I agree...maybe exerising, taking vitamins, eating right...maybe it might not help alot..but you never know...and like you said you do feel better eating that spinach salad instead of some greasy fried food....

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011
    Options

    Me? I'm skipping food and going straight to the alcohol...Laughing

    Keeps the weight off AND controls my anxiety. It's a win win situation I have just picked up on the benefits of.

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
    Options

    I'm trying to lose some weight, too.  I'd be happy if I could drop 20 pounds but I'm just going to keep exercising and eating healthy rather than diet. I'm hoping that will help prevent a recurrence but I know eating healthy will help prevent heart disease and other types of cancer so it certainly can't hurt. 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011
    Options

    I'm 5'4" and weigh 125. Wear a 4-6 dress. My new "pixie" haircut takes 10 years off. Everyone says I look great.... now to start feeling that way.

  • navymom
    navymom Member Posts: 842
    edited May 2010
    Options

    Yep, I did the eat what ever you want thing too.  I have never been a fast food junkie but once I started chemo I had such a taste for french fries!  So my DH cooked them for me on a regular basis.  I did try to exercise during treatment(walking, stationary bike) but mostly I just didn't have the energy.  And add chemopause and steroids into the equation and there I was finishing chemo 22 lbs heavier than 7 months prior when this whole nightmare started.  I am down 6 lbs. now  Trying to eat right and working out like crazy.  Its a slow process.  Hoping with summer coming and being outside and more active things will improve.  Although...........I like your plan too, HHfheidi.  Hmmm......Something to think about

    Navy

  • bobbi1058
    bobbi1058 Member Posts: 2
    edited May 2010
    Options

    Here's my story:

    In Oct 05 at 42 my 1st mammo came back w/ a suspicious mass. I had an ultrasound, dx mammo & biopsy done & was told it was nothing. Fast forward to Monday, January 18 2010...I found a small lump in the same area...darn....called my doc & saw her that day. She scheduled an ultrasound & mammo & by Friday the radiologist said it was considered malignant until removed & found otherwise.It did turn out to be the same lump, I don't know how they misssed it in 2005. I then saw the same surgeon who had the biopsy done. He said he didn't think it was anything & to biopsy it again. I said 'NO' remove the lump since it was the 2nd time in dealin w/ in. We went back & forth & I left & saw another surgeon. He said let's biopsy & again I said 'NO' please remove it. He agreed to my request. Surgery was done on February 24th & I got a call on the 25th to come see him the next day. It was IDC...he tells me 'Good thing we removed it." Had 2nd surgery to get clean margins and the Mammosite Savi put in for radiation. I'm now going thru chemo, taxotere & cyotan, 6 treatments. I also switched oncologists when my 2nd opinion with her was a better fit for me. So anyone thinking about getting a 2nd opinion, DO IT! I got 2 & went w/ the 2nd doc both times. The hardest part for me so far has been the hair loss. I was actually starting to get depressed over it but am doing better now. I've actually lost 7 lbs due to nausea, etc. 2 chemos down, 4 to go. Thanks to all for your postings! They are all so inspiring to me & help me to see there will be life after TNBC.

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
    Options

    bobbi thank heavens you insisted on have it removed...I still have never figured out why they biopsy first when you KNOW you don't want it there anyway....I'm sure there is a reason but haven't figured out what it is yet.

    Good luck with the rest of your chemo! 

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
    Options

    I think I like your advice Heidi!  Liquid diet....I think I may try it.

  • violet7
    violet7 Member Posts: 22
    edited May 2010
    Options

    Hi Titan,  I gained over 20 lbs on chemo plus about another 10 after my masectomy, which was rough and had complications.  Basically, with the surgery and the chemo I was laying down from October to the beginning of April.  And I was a size 12 before my surgery.  I need to be a size 8 before I reconstruct.  Weight comes off so slowly these days.  In Oct 2008 I had a radical hysterectomy including ovaries out, so I did the insta-menopause thing prior to doing chemo, but since chemo my belly is really collecting fat.  I was always an hourglass, no matter my size.  I was a size 5 hourglass until I had children starting at age 34 (at which point I really became hormonally unbalanced).  I was a size 12 hourglass before my rad hysterectomy.  I am a blob now!  I have no breasts and can not locate my waist.  And I have Sinead O'Conner hair, no eyebrows or eyelashes.  My daughter took my avatar pic just prior to me starting chemo and the before/after effect is startling.  For the most part I am determined to be better than ever, get rebuilt, be bionic, get a yoga body, be healthier than ever.  But there is part of me that just wants to put on a pair of roomy sweats and hang out at the casino with a spicy Bloody Mary in hand waiting for 'em to bring out the crabcakes.  LOL.  As soon as the last of the harsh chemo effects wore off I got myself off the mashed potatoes and ramen and started eating the way I did previously:  mainly fresh vegetables, some fruit, and some lean protein - but I cut my calories down to about 1400 a day.  I'm walking an hour a day, and I just started back up at the YMCA and I began riding the bike to nowhere every other day for 1/2 an hour to start.  I will start with the weight machines soon, although I'm limited with my upper body as I have left arm lymphedema.  I'm also going to start a yoga class locally that is free to cancer patients.  I have DVDs to work with too.  I haven't done yet, but will.  I'm trying to move a lot, lite manual labor around the house.  It feels good when it stops.  Anyway, I just have to keep plugging away.  It seems just one slip up and I fall two steps back.  If anyone has any tips on moving excess weight off more quickly, please share =) 

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011
    Options

    Bobbi:  I think he should have said, "Good thing I listened to you."  Hang in there.  The hair loss is hard at first.  So good you followed up with other docs and pushed for good treatment.

    Violet:  I'm slowly plugging away, too.  I like the thread where we all post our daily exercise.  It keeps me motivated.  Walking and riding that bike will really help, and yoga, too?  That's super.

  • Summer38
    Summer38 Member Posts: 96
    edited May 2010
    Options

    Good news Heidi! Congratulations!!! I start chemo on Wednesday and aside from hair loss, the weight gain is a huge fear. Maybe I'll just stick to the liquid diet right off the bat!

  • angelsabove
    angelsabove Member Posts: 39
    edited May 2010
    Options

    Summer.....heres to hoping you best with the start of the upcoming treatment. I did gain about 25 lbs from chemo.....and girls it is a challenge getting it off. LOL. I am trying though. 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011
    Options

    violet, your post reminds me of the question, "Other than that Mrs. Lincoln, how was the play?"

    You've gotten through the hard part, so hopefully the rest will just take some time. I really put "the pedal to the metal" after treatment ended and look what happened to me...unexplained seizure.

    So, I think there is something to be said for taking it easy. It's hard for me to throttle back, especially with horses and sailing. I continued to work out all through treatment. Now though, I am really scared of another seizure and the meds make me dizzy. My onc says it's going to take awhile for me to get my confidence back that I am going to be OK. I suspect he may be right...

    In the meantime, I still have nature classes to teach and observe and nine fox kits to care for. Two orphaned dens, one still out in the wild and one transported back to my farm. I am Meals on Wheels for the former and the lady with the food basket for the latter.

    At some point I'll post a photo on the Not Just TNBC thread of my foxy family.

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
    Options

    Heidi - looking forward to seeing your foxy famly on the other thread!

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
    Options

    Man Violet..you have been through IT....way to much but it sounds like you are working hard to get your self back...I was tired from just reading your post of all you do! You must sleep well at night!



    I "used" to be a size 8...no more..more like size 10 or even 12...argh...oh well...



    We have a tornado warning here in Ohio right now....it's really windy....!!! May have to go to the basement!

  • kittycat
    kittycat Member Posts: 1,155
    edited May 2010
    Options

    Well girls...  I officially joined the TN club a couple weeks ago.  Although, I was diagnosed with bc last year at the age of 39.  I knew back then I was ER/PR negative.  I had DCIS and chose to get a bilateral mastectomy to prevent a recurrence.  No chemo or radiation. 

    Well, I just got re-diagnosed with IDC & DCIS.  It was imbedded in the scar tissue near my implant.  I am triple negative, which my onco says is very common for BRCA1.  My sister also is BRCA1, but she was Er positive.  Strange, huh?

    This time I will have to get chemo and possibly radiation.  I haven't found out my official stage yet, but it wasn't in my nodes and I had clear margins.  Thank you GOD!!!