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Calling all TNs

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  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    I worked for a chemical company that made synthetic rubber. However, I did public relations so I was in the office not in the plant too often. As far as I'm aware, none of the other women who worked there when I did have come down with BC. I sometimes wonder, though... 

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    Violet~ How are you doing??? Been thinking about you lots.  Pls post when you can.

    I can't remember what I've posted where but I have a big week this week...

    Mon: PET

    Tues: brain MRI

    Wed: DS graduates from middle school

    Fri: oorph and te's put in (assuming that M & T are clear)

    Hope everyone has a GREAT week!!!

    xxoo

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    Oh~ on the push-ups: I was 6 mos out of chemo before I could do them.  I can now do them on my toes!! (till Fri anyway... then I get to start over)

    I was a featured success story on a fitness site:

    http://cathe.com/survivor-by-michele

    You can do it ladies!!!!

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    Wow Michele..you do have a busy week!  Check in with us when you have a second!

    We will keeping working on our push-ups for you! 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011
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    Yep, the only real risk factor for getting breast cancer is being a woman; and even that has its exceptions.

    The rest is just  bullshitting with a scientific spin.

    On another note my older son graduated with a double BS in Health & Physical Education Friday and my younger son graduates this Saturday with a BS in Biology. It's like a pay raise!

    Now I am starting to get ready for our month in Maine; a little bit each day so I don't overdo it. That last episode was a bit too scary.

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    Wow, I haven't been on for a few days and there are so many more of us!

    I think everyone has it backwards--we have the good cancer!  I am relieved that I don't have to take all the additional toxic drugs with the horrible side effects.  However, I did change my diet: no white foods will get rid of the belly (lost 20 pounds of belly fat doing this) and I do love my red wine but I now find that I can make one glass last 3 hours!  I try to only drink with food or only have sweets with a meal to lower the glycimic impact.  I have a huge sweet tooth but I am trying to replace sugar with healthier sweeteners. 

    Hardest part for me is getting in 5 hours of exercise a week.  I do a lot of walking but I know I should be doing more.  Since I am still in the middle of reconstruction, I asked my PS for a PT so that I can begin to strengthen my arm on the side of surgery.  I would love it if I could just go to a gym and  work out, but I am afraid of hurting myself or doing damage in my reconstructed area.  I am hoping that physical therapy will kick start my workout plans and then it won't be such a struggle.  Just tired all of the time--still in a chemo fog and sore from surgery.

    I am so glad that you started this topic, Titan.  We may have an agressive cancer, but I am hoping once they get it out of you, that it won't come back.  Call me an optomist, but I hope that I have eliminated my main cause of getting cancer: my abusive boss!

  • Wyoming
    Wyoming Member Posts: 4
    edited May 2010
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    Hi,  I was 50 when DX.I found lump in April, went to doc had surgery right away. Dx came back on 5/08/08/ Two weeks later had another surgery to look a node, ended up with 4 of 14 positive. Started with 6 TAC then went for 8 weeks of rad with 10 boosts. In March I had pain in my upper back had blood work and CT showed mets to liver and lungs. Started Carbo and Gemzar  and Avastin every three weeks for the next ten months. Markers started to climb. Tried Avastin, Doxal, and Abaxaine(sp). End up with moth sores to where I couldn't eat and my body was peeling, Tried taxoterre and Xeloda. #'s continued to climb. Now I am on additional dose of Xeloda. My Onc is trying to get permission for  compassionate use with the PARP. No BRACA done as no family history I have a blood test Wed and see the onc on Thurs.

    Good Luck to everyone.

    Vicky

  • lrm216
    lrm216 Member Posts: 534
    edited May 2010
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    Where is Violet?????  Anyone hear from her????  Hoping like hell she's just been busy and will be here soon.

    Linda

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    Linda~ I was wondering the same thing.

    VIOLET!!! WHERE ARE YOU??? {{{hugs}}}

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    MBJ...you are an optimist Laughing!  I like your thinking!  White foods heh?...are you talking potatoes, noodles, pasta, alfredo sauce?  I hope not because these are my fav. foods...I do think though, that I do have 20 lbs. of belly fat

    Vicky..welcome to the tn club...let us know how you are doing...sounds like you have been through alot...too much...

    Heidi..I think you may be my long lost sister..we think alike..and that is great about your boys!  My DD will be a senior in college this fall and my DS will be a sophomore in college.can I brag a little..they both made the Dean's list! ..plus my DD is engaged to be married...we have along ways to go..no pay raises for us!

    And Violet...check in sweetie...we are here for you..just have you have been for us so many times.

  • PauldingMom
    PauldingMom Member Posts: 392
    edited May 2010
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    I am doing the low carb diet also. Nothing white and even cut out most other breads and cereals, even the low carb. type. Meat, eggs and veggies. Very little fruit and I've cut out much of my fat intake. I'm losing weight but it's very slow. I did find a recipe for Coconut Macaroons that are carb free this weekend. They turned out pretty good it you like coconut.

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    I'm trying to eat more greens like kale, mustard greens, etc. I'm not too familiar with cooking them so would appreciate any good recipes anybody might have. Laughing
  • indomitable1
    indomitable1 Member Posts: 136
    edited May 2010
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    Hi All! Too many of us....I'm 45, dx'd at age 44 3/09, bilat MX with right AND (1/14) and SNB, TAC x 6 (started 5/27/09 once drains finally removed; interrupted by port infection but thank God no sepsis; completed chemo 11/4/09), Rads x 36?? with 5? boosts (will clarify at next f/u-by that time I was just counting down.) Finished treatment in February. LE RUE. Birthed 3 kids at ages 28, 30, & 36?!). Breast fed 2x 4-6 months; 1 x 1 month. My oldest came w/her Dad b4 the others and is awesome. (+) Fam Hx (paternal grandma and aunt but both postmenopausal-one ER+ other Her2Neu+). Oh well. BRCA 1/2 (-)

    I love kale sauteed in veggie broth or olive oil in which I've just sauteed garlic. Sometimes I'll add a little turmeric or curry and a little sea salt. Also like to make greens/beans with kale-just by adding some white beans, oregano. Check out lowfatvegan.com and  veganyumyum.com as well as nutritionmd.com for recipes. I also try to chop kale or spinach and toss in any soups I might make.

    I'm sure if they x-rayed or even MRI'd my head, there'd be nothing. Gotta check out E-lab. And trying to get consistent w/exercise.

  • LNFletch
    LNFletch Member Posts: 12
    edited May 2010
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    I'm trying to do a "lower" carb change in my diet. When they told me that I couldn't have any carbs or sugar prior to my PET scan, I got headaches and felt sick. It was really hard to cut out grains and fruit for two days, I didn't even want to eat anything at all. I think it was because I was told I couldn't have it at all. I'll have to try your kale recipe, Indomitable. I have been trying to eat more broccoli too. I was able to find some broccoli sprouts at the store, so if I don't have broccoli, then I add the sprouts to my salad.

    MJB- I like your attitude too!

    Vicky- the pain in your upper back, was it a sharp pain, or dull pain? How long did you have the pain before you had it checked out? 

  • violet7
    violet7 Member Posts: 22
    edited May 2010
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    I'm here!  I have an appointment with the oncologist late this afternoon.  I guess he will tell me when and where with the PET Scan and the surgically removing the "cyst".  I'll post back again when I know what is next.  I'm still so freaked out.  I need to catch up on reading all the posts from the last few days.  Great thread idea, Titan.

  • Wyoming
    Wyoming Member Posts: 4
    edited May 2010
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    I finally read all the posts. We are diverse group yet we all have TN. My onc said that I didn't do anything to cause my cancer. It is also weird how some go into remission and others have mets and continue to have problems. Congrats to those who are finished with trt and on a 3 month or yearly doc visits.

    I have two grand babies that I have to fight to see grow up. So I have a very postive outlook. And a lot of fingers crossed.

    Have a good week.

    Vicky

  • tibet
    tibet Member Posts: 29
    edited May 2010
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    hi MicheleS

    Read you are going to have Ooph. Pls tell me how it is. I plan to do it soon also. Are you BRCA positive thus Ooph?

    You mentioned you had PET, MRI. Are they routine scans? Hope all is well. 

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    I'm not BRAC + but my Aunt died of ovarian cancer while I was on chemo.  :(  I'm terrified of ovarian cancer...  I get scans every 12 weeks.  My MD is really aggressive.

     BTW~ My PET today was fine.  clean!

  • PauldingMom
    PauldingMom Member Posts: 392
    edited May 2010
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    good to hear michele

    Good luck with your appointment today Violet.

    I love Swiss Chard but have a hard time finding it down here in GA. Lots of Collards and Mustard greens. I like to cook up a smoked turkey leg and add some onions to it. Then add a little pepper flakes and the greens. I usually mix um up, collards and mustard greens.  

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011
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    My hubby loves to cook and take care of me. He was a sea-going Captain until retirement 2 years ago and is now enjoying coddling me after all the time spent apart.

    So, he makes LOTS of healthy meals at home and when we go out I just say "screw it... I'm eating what I want to".

    I had an ooph a few years back and it was no big deal. It was done laproscoptically and I was watching Blue Collar Comedy the next night. OK, laughing hurt a little... 

  • smithlme
    smithlme Member Posts: 383
    edited May 2010
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    Hi Vicky,

    Welcome to our sucky TN club! I know how you feel about fighting to see the grandbabies grow. I have three grand-daughters and a grandson due in September. I am doing all I can to see them grow up. I want to live to see great-grandkids, too. I have my goals and I plan to acheive them!

    Red M & M's as lipstick! I use to paint my lips with them all the time. I am a carbaholic and love all the comfort foods. During chemo I managed to eat on 30 pounds. The steroids made me eat like a pregnant race horse!

    I do love my fruits and veggies. By mistake I grabbed bok choy instead of spinach at the nursery. We planted the bok choy and it's growing fast. Does anyone have any recipes for it? I've only had it in a stirfry.

    Linda

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    Linda - there is a recipe at this link for bok choy, which I've made before.  I have a few cookbooks by this author and her recipes are all low fat and very tasty and healthy.  You'll find a lot of different recipes on this website:

    http://www.artoflivingwell.ca/recipes/vegetarian-a-vegetable-sides/435-baby-bok-choy-and-oyster-mushrooms-with-sesame-sauce

    Sherri

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011
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    I am following the comments on cooking greens with interest.  I grew up thinking you could only cook turnip greens, kale, etc. all day with fatback in a big pot on the stove, add a little vinegar; some of you from the South get my drift.  I didn't even know how good green beans could be until I moved away from home.

  • Kathleen48
    Kathleen48 Member Posts: 3
    edited May 2010
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    I will be 48 years old tomorrow.  Was diagnosed with IDC TNBC on March 31, 2010 after the tumor was found on a screening ultrasound.  Never was detected on mammogram.  Had a lumpectomy on April 14, 2010 followed by mammocyte radiation for 5 days.  Began chemo (Dose Dense AC-T) -- eight rounds on May 12, 2010.  Am getting ready for my second infusion this Wednesday (May 26).  Just received news that I am positive for the BRCA-1 gene mutation and have been advised to have a bilateral double mastectomy and ovaries removed at the conclusion of chemo.  Kind of alot to digest in a mere two months!!  Am struggling with the impending hair loss situation at this point and of course the next bout of feeling lousy after chemo.  TNBC scares me on a daily basis ... I am praying that chemo and next surgeries are enough ... I had no metastasis and lymph nodes negative.  I want to knock this out and never let it back in!

  • kittycat
    kittycat Member Posts: 1,155
    edited May 2010
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    Michele S - I had a PETscan and brain MRI last week. Everything came back looking good!  Woo Hoo!  I pray your results are also good!!!  :)

  • tibet
    tibet Member Posts: 29
    edited May 2010
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    MicheleS

    I think it is a lot to do PET CT scan every 12 weeks. That's a lot of radiation, isnt it? I think every 6 months should be enough.

  • chinablue
    chinablue Member Posts: 31
    edited May 2010
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    Do they always advise to have bilat mx and/or oomph if you have  BRCA gene even if there is no evidence of cancer in the other breast or ovaries?

  • Meece
    Meece Member Posts: 10,618
    edited May 2010
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    Welcome Kathleen48, and Happy Birthday!  I am so sorry you have to deal with all of this all at once.  You are proably just about ready for the hair loss to begin.  As a hint, once it starts, it is a wee bit less traumatic if you cut your hair short.  I cut off my long ponytail, two weeks post 1st chemo, and within a few days the hair started coming out heavily, then I buzzed the rest off, so that the hair faling out was only an inch or so long.

    I did not have the BRCA test since there was no history of BC.  So I have no input on that BMX or Ooph.

  • Wyoming
    Wyoming Member Posts: 4
    edited May 2010
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    Kathleen48 I did the same thing as Meece regarding my hair. I've had to lose mine twice now. I go bald and I went bald before. I'm proud of my bald head. I get looks but that doesn't bother me.  I'm also a high school teacher and I feel it helps my students to see that you can over come obstacles. I know this easier said than done. Do what is most comfortable for you.

    I also didn't have the BRCA test since I had no family history either. I do have a question: what is Ooph? I don't know all the abbreviations.

    Take care.

    Wyoming

  • smithlme
    smithlme Member Posts: 383
    edited May 2010
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    Happy Birthday Kathleen! I found out after my second diagnosis and mastectomy that I am BRCA 2+. As soon as I healed from that surgery I had a hysterectomy with bilateral Salpingo oophorectomy. Doesn't that sound fancy?! In people-speak...everything removed. Chemo put me through chemo-pause and my first diagnosis was TN. My second diagnosis was ER+/PR- so my geneticist recommended having everything out.

    Losing my hair was the worst part of this "journey." I had it cut short before I started chemo then had it buzzed, and soon after, shaved. I chose to wear scarves but I had two wigs that I only wore twice. Do what feels right for you...

    Linda