Where are the tri-negs!

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  • liz19
    liz19 Member Posts: 97
    edited March 2009

    Hello Ladies,

    i am one year NED :)  i am also triple neg. like you ladies , today is our 23rd.  anniversary!!!!! ,6mo before i found my tumor , i had a baby boy , at age 40 , i had three girls also that are now 23,17, 14 and our son is 18 mo now!!!! i have been blessed with all the support in my family and church friends with alot of prayers , and the ladies on discussion board too!!!!!  i am on the coast of north carolina , i hope you all have a wonderful weekend!!!!!!

                                                                                                 liz19
     

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  • Tonya36
    Tonya36 Member Posts: 66
    edited March 2009

    I hope everyone is doing well.  have a wonderful weekend.

    God Bless,

    Tonya

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2009

    Wow, Liz... not exactly how you wanted to spend the first year with your son. So glad you're doing well. Happy Anniversary and best wishes for a long future of NED!

    Tonya: back atcha! It's beautiful here this weekend. Yesterday was in the 80s... 

    Paula 

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  • bourscheid
    bourscheid Member Posts: 718
    edited March 2009

    Is there anyone out there who is Triple Neg and Stage IV who has been dancing with NED?  If so, how often do you see your onc and is there any treatment that you are taking to keep the cancer at bay? 

     I go for at CT on Wed. to see if the chemo has eliminated the last bit of remaining cancer in my liver.  Everything else was clear on my last PET/CT.  I am praying hard for the cancer to be all gone and to be able to be off chemo.  Needless to say I am experiencing major scanxiety this weekend!

     Hope all are well!

    Hugs and blessings!

    Lori

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  • tos
    tos Member Posts: 376
    edited March 2009

    Lori all my prayers your CT will be clean!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    Lori,

    May your scan bring great news. You are a special lady to be dancing with NEDS.  The only stage iv ladies I know of that do dance with NEDS...is us chestwall ladies. I still get scans very three months. Blood markers monthly.

    May God bless you with complete  healing.

    Flalady

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  • liz19
    liz19 Member Posts: 97
    edited March 2009

    THAMKS , Paula ;

    We had a great time, not what i was expecting either after having my baby boy, I Had alot of support  with my family and friends , have a great week to all u great ladies!!!

                                                                                         T AKE Care, liz19 

                                                                                                             
     

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Lori,

    Praying your scans will be clear and you will keep dancing til your 100!

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  • g94u67
    g94u67 Member Posts: 436
    edited March 2009

    Saying a prayer for my TN sisters. Hope your scans are all clear!

    We need some good news here.

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  • bourscheid
    bourscheid Member Posts: 718
    edited March 2009

    Thanks everyone!  CT tomorrow!  Getting nervous and trying to drink that barium junk.  UGH!  Should know something Thurs. Having the CT because insurance denied another PET so soon after the last one (in Dec.).  Onc argued with them for 15 min. about why he wanted a PET/CT vs just a CT.  However, they wouldn't budge.  So...CT tomorrow and depending on those results maybe a PET on Sunday. 

    Thanks for all the prayers and good wishes!  Here's hoping for NED!

    Lori

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  • TorchSong
    TorchSong Member Posts: 348
    edited March 2009

    Lori I'll be thnking of you!

    I'm done with chemo (three weeks out) (FEC x3, Taxotere X3) and start rads on Monday. The T really kicked me...I was SO glad to be done with it. I'm hoping the rads are easier, as I really need to start getting back into my life (and work...). 

    I noticed that a lot of us on the board seem to be Grade 3; is that something connected with TN or just coincidence?

    Martha

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  • peachwater
    peachwater Member Posts: 16
    edited March 2009

    Hey Florida Lady!

          I hope you check in.  I have an appt next week to see what to do about microcalcification clusters.  Man this is almost the same date last year that I began my journey.  Its in my only breast I have left-----I really didn't expect this so soon---where does one go from here and what are my chances of not seeing this again for a longer time after this?  Shoot....did the chemotherapy for stage I just not work?  Should I have had more than 4?  Any thoughts would be greatly appreciated right now from anyone who has gone through this more than once.

                                                                                       Barby

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  • Luv2sing
    Luv2sing Member Posts: 145
    edited March 2009

    Helloooo,

    Just checking in too.  Go for blood count tomorrow and second round of chemo next week.  I've been trying to soak up all the triple neg info I can get my hands on.

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2009

    Lori- you had your scans yesterday. I'm praying for good results!

    Martha- congrats on being finished with chemo! Remember to grease up well after your rads each day--aquaphor is messy stuff, but my skin held up well. May all your follow-ups be good ones! From everything I've read, grade 3 is pretty common for TNs.  

    Barby- How scary for you! Did those microcalcs show on mammo, or can you feel anything? Be thinking of you (cancer sucks!).

    Hey Luv2sing- best wishes to you with your treatment. What's your "poison" and how many cycles? I had AC x4 and Taxol x4 (DD) last year this time... 

    Take care TNs... Paula 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    peachwater,

    Can I just say...SHIT!  Don't second guess your treatment or you will go nuts. I know that is really easy to say but there are no proof for anything they do too us TN. They are learning daily about us.  I'm so happy it's not real defined yet.  I would say do your 2nd mast. (I did mine a year apart also. I also found it very freeing to not having just one breast)  I don't know about chemo.  I have a feeling that they want to do some because of the time frame??? I would ask if you have a "basal" tumor. If you do I would do chemo. Not ever one who is TN has a basal tumor. This is a more aggressive tumor. This little bit of cancer here and there is really hard to know what to do. Cut it out...do you still have disease or not?

    Let us know what you found out.

    For me I'm running out of chemos.  I will be forced into Phase I trials over the next few months. Yuck! no proof of any help while this stuff is coming back into my skin fast!

    Flalady

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  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited May 2013

    Hi everyone,

    I have been reading the posts, got to page four and am posting now. Will continue to read them all ... trying to catch up. So many!

    TN here. I will be having my second taxol tx on Monday.  My first one went better than I thought. Had one really bad day, could hardly hold even the phone, bloody nose, etc. Now, the hair is falling. I had it cut last week. I hope it lasts until Saturday. I take 3 of my grandbabies to the pizza parlor to play the games - do not want to freak them out with a bald Nana! Bad enough they haven't seen me with short hair yet Surprised (was about 5 inches above my waist).

    According to my onc nurse, I am getting a triple dose of the taxol. I am thinking it is because as my onc calls my cancer the "beast" he is being aggressive.  After the taxol, I will have 4 cycles of AC. We decided on my last visit to postpone my exchange until after all chemo is done to make sure I heal okay. I have a low immune system and worry about the healing of the surgery wound.

    I am still waiting to hear from my insurance co. as to if they will okay the genetic testing. I hear it is rather expensive and needs to be approved. I have two daughters, 5 granddaughters so I am so praying they say do it. My mom is a breast cancer survivor, her aunts all died from it and all the men on her side of the family has dealt with prostrate cancer.

    Cheryl

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  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited March 2009

    Emily from the genetic testing just called, my insurance will not pay for the testing. She mentioned that if I find out more re the ages of my mom's aunts as to when they got their cancers, they might, but as of now, they are assuming they were over 50, so that makes it less likely I am going to test for a mutation.

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  • peachwater
    peachwater Member Posts: 16
    edited March 2009

    Hey all,

              Yes, the microcals showed on the mammeogram.  But she wasn't too concerned about it until she saw my mamm last March.  There was a big difference. In January, my breast felt funny and I thought my periods would be coming back---then in February I got the flu, my lymph nodes on my neck swole up and I began to check for other lymph nodes and found this thickening of the skin at 2:00 on my breast.  I immediately jumped into action and got my mamm a little early.  Talked the lady into letting me see it, and the doctor who reads them came in.  She felt my lump and scanned the area.  I was happy that we didn't see a horrific rounded mass like last time--but am concerned because it hurts a little under my arms.Scary?  I don't know....I just seem to think in one day at a time frame since all this began. We've had two teenagers die at our school this year, a mother of one of our students got in a wreck and died and just this last week one of our school teachers called in because she felt bad and she had internal bleeding.  A fellow teacher went over to get her lessons plans that were due friday and found her.  Jeepers---life is unpredictable!  I sure would like to be a grandma though. Florida Lady---I know u have worked through all of this----sure hope I can do it as well---seemed easy when I thought it was a small chapter in my life. 

                                                                          thinking of u all..

                                                                                        Barby...

                                                                       

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  • misty123
    misty123 Member Posts: 242
    edited March 2009

    Hi Ladies,

    I stalk here also looking for other information to help on this journey but it seems like we are all in the same boat, nothing new recently to share. I was dx 12/02/08 and had unilateral mast, just wanted the casner out of me and TC x 4 tx last one coming this tues, I guess I will try recon after that, probally a prop mast of the other breast. I look at all the other tx ER+ people follow up with and then I wonder if I really want to do all of that or am I lucky/unlucky because there is nothing to do after chemo.

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited March 2009

    Hello jecooper - i elected breast conservation, had 4 AC/4 Taxol and 34 rads....have not regretted that choice for a minute....trust your insticts and your provider....

     If I can help - let me know...you can PM me...

    Hugs from Holly

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited March 2009

    Hi everyone!  I am in my 11th year post treatment and still okay.  When I was diagnosed with TriNeg, no one knew much about it and basically ignored it.

    I guess I got lucky, I guess.

    Hugs, Shirlann

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  • kimvidito
    kimvidito Member Posts: 105
    edited March 2009

    Hi everyone

    I am a triple negative as well.  I haven't posted in over a year.  I was working full time as a nurse and my son has lupus of the brain.  He recently had is hip replaced and I was caring for him.  When I returned to work about 4 weeks ago, I started feeling really bad.  I couldn't drive very far without feeling exhausted and had to come home early every day.  I know I have stress so I thought I would take care of myself and take some time off.  It helped a little but I am exhausted and have a terrible pain in my back radiating to my chest where I had all my rads.  I had 5 tx of chemo and 6 weeks of radiation that started with a lumpectomy.  I see my oncologist tomorrow.  I guess more tests are in order.  The whole triple neg thing worries me but I also have metaplastic carcinoma that is very rare and aggressive.  Hopefully I'm just tired from my chum beeing sick.

    take care

    Kim

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    kimvidito,,

    May God bless you with strength and peace to get through this time.  You have been through sooo much.  You also may look into lymphedema of the chest wall this can very painful.  I'm thinking this because you may have been lifting your son? Also you can have a lot of pain in the chest wall from a condition I can't think of the name right now that cause the muscles that attach to the breast bone and ribs to stiffen up. This is from radiation.  Exercises does help this condition.

    I hope you can get into your doctor quickly and find out what is going on.  Let us know what you find out.

    God Bless

    Flalady

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  • kimvidito
    kimvidito Member Posts: 105
    edited March 2009

    FloridaLady

    I am going for an abdomen and chest cat scan in 1 week.  I am also beeing treated for lymphodema with physio just in case.  I did not get any results for my MRI.  My md also sent me for blood work to look at the tumor markers.  I am off of work for 1 month so hopefully I will feel better.

    thanks

    Kim

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  • kathygolf
    kathygolf Member Posts: 8
    edited March 2009

    This is my first blog - I was diagnosed with triple-negative breast cancer, Stage II last summer. I have been on chemo and now have four more sessions of taxol.  I have a port - beginning to have problems withdrawing blood samples last two chemo sessions - Put arms above head, pumped fist and layed down -- finally got results - Has anyone else had these problems? Also, when was your port removed after chemo?? I had my right breast removed and scheduled for implant in May. Plastic surgeon indicates he can take port out - do I need port to stay in?? How long, on average.  I have done well on chemo - continued to play some golf and doctors/nurses have been great.  Any comments on what I should expect next would be appreciated. 

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  • kathygolf
    kathygolf Member Posts: 8
    edited March 2009

    Wow - good news that you are doing great - I finish my chemo in 4 weeks, then hope to have implant surgery in May and begin to feel normal again.  Thank God for wigs ----  Kathy

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  • kathygolf
    kathygolf Member Posts: 8
    edited March 2009

    I am thinking and praying for you - I have triple-neg breast cancer and also Sarcoma cancer in my right hip.  Both cancers occurred within one year - no family history.  I am 62 and always been active and pretty healthy.  Kathy

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    kathygolf,

    I had my first port completely quit working.  Found out later in was put in wrong.  A lot of people do have problems with ports.  My second one is now giving me problems.  The only thing we found that helps is putting in a heavy dose of Heprin (sp?) after using it and leaving it in the port.  When we go to use it again it does work better.  When to remove the port is really up to what your doctor's think will be best.  Do you have good veins in your non mast arm?  If you have poor veins I would leave it in for a few months.  Again it depends how much follow up your oncology wants with blood work etc.. I have poor veins and a bilt mast. So I can't use either arm for needles.

    Glad to hear your treatment did not stop you from doing the things you love. 

    Flalady

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  • kathygolf
    kathygolf Member Posts: 8
    edited March 2009

    I am new to this site - what is NEDS???? I have triple neg breast cancer and Sarcoma Cancer in my right hip.  Right breast removed and walk with a cane - Doing OK - have 4 more chemo sessions with taxol.  Have a port - did you have one - when was it removed??  Nurses beginning to have problems drawing blood from port - anyone else had this problem?? what was solution??  Thanks for any help you can give me.  Kathygolf

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  • jecooper
    jecooper Member Posts: 2
    edited March 2009

    RN2Teach-Thank you for your reply of March 2nd.  You are right I wasn't checking the reponses as often as I should have, as I was having a difficult time emotionally.  I am sure everyone goes through this when they are first diagnosed.  This week will be my third treatment of four of Adramycin and Cytoxan (sp). Then I will start Taxol every week for 12 weeks, then radiation.  I having been reading all the comments, and wondering if anyone was doing Taxol weekly?  I am in a clinical trial for Avastin (not sure if I am getting it until the end of all chemo treatments) Part of this trial includes the Taxol every week for 12 weeks, I am guessing it will be given at a lower dose, will have to ask my doctor about this???  RN2Teach, you seem to have the same tumor size, grade and lymph node involvement as I did.  What type of tests do they do every three months? 

    HollyHopes:  Thank you for responding March 15th about your decision on breast conservation.  I decided after talking to two doctors to go with the breast conservation since I was able to get clear edges after surgery followed up by chemo which I am currently in the process of doing and radiation to follow. It looks like you been on this blog since 2007, how are you doing? 

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