Hello new here to Team Pink

Loriell
Loriell Member Posts: 13

Hello 

I just discovered this forum. I am 42 years old. I was DX with invasive ductal carcinoma of the left breast on Oct 8th. Had bilateral mastectomy Oct 28th With expanders put in.  I am currently four weeks post op. I will be starting chemo on Dec 13th with four rounds of chemo ( TC) every three weeks. After that radiation and tamoxifen for five years. I'm hoping this will kick cancers butt. I have a four and two year old. 

I am stage 2a, estrogen positive, HER -, BRCA negative. I have vascular invasion in my breast but no lymph nodes.

Hello all you Survivors !! If anyone has some advice for the start of my chemo treatments or a similar DX I would love to hear your story. 

 

 

Comments

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    My dx was similar

    but I'm older and did not have mastectomies.  I had 4 rounds of Taxotere and Cytoxin and it is quite doable.  Not easy, but doable.  I remember thinking "I should feel really really awful, but I don't".   Drink drink drink plenty of fluids, take all the meds they give you to prevent side effects and expect the unexpected.  I had a pretty easy time with the TC, but I had many many side effects no one told me about.  I found that keeping a journal/calendar helped me anticipate the next cycle and my side effects and good days were pretty consistent throughout.  For example I might be weak and shakey and I'd look back on the previous 3-week period and sure enough, I felt the same way around the same time.   It was sort of reassuring to know that in X # days I'd be my old self again.   The calendar also helped me count the days off and gave me a sense of accomplishment as the time went by.  

    I take Tamoxifen and have no side effects.  It has been 3 years since I completed treatments.  It took me over 2 to actually stop constantly worrying about recurrence.  I'm good and life is good.  Hope you get to this place soon.

    Suzanne

  • Loriell
    Loriell Member Posts: 13

    My dx was similar

    but I'm older and did not have mastectomies.  I had 4 rounds of Taxotere and Cytoxin and it is quite doable.  Not easy, but doable.  I remember thinking "I should feel really really awful, but I don't".   Drink drink drink plenty of fluids, take all the meds they give you to prevent side effects and expect the unexpected.  I had a pretty easy time with the TC, but I had many many side effects no one told me about.  I found that keeping a journal/calendar helped me anticipate the next cycle and my side effects and good days were pretty consistent throughout.  For example I might be weak and shakey and I'd look back on the previous 3-week period and sure enough, I felt the same way around the same time.   It was sort of reassuring to know that in X # days I'd be my old self again.   The calendar also helped me count the days off and gave me a sense of accomplishment as the time went by.  

    I take Tamoxifen and have no side effects.  It has been 3 years since I completed treatments.  It took me over 2 to actually stop constantly worrying about recurrence.  I'm good and life is good.  Hope you get to this place soon.

    Suzanne

    Hello

    Hello Suzanne,

    Thanks for the advice. I plan on drinking so much water I might just float away the day of chemo!

    Right now I feel like I'll always worry about a recurrence but hopeful to get to the place your in ....three years out!  One thing that keeps me going is knowing I am doing everything in my power to rid this cancer.

     

    Thanks for your reply, I'm happy I discovered this discussion board. Do you know any other good ones?  I'm trying to work on adding a picture to my profile?

  • lintx
    lintx Member Posts: 697
    Team Pink!!

     

    I can tell you're a funny girl!  Love thatSmile  I'm a yr out and had IDC, too.  Mine stayed in the duct w/no node involvement.  I had a bilateral but no chemo or rads and take Tamoxifen being 98% estrogen positive.  I was stage 1.  I had Diep flap reconstruction.  I'm not to the point Suzanne is, regarding not fearing recurrence.  Wish I could be.  Maybe someday! I'm wishing you the best during treatment and truly can feel your great attitude coming through the post!  Keep in touch w/us.  Hugs, Linda 

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    You ARE going to kick some

    You ARE going to kick some butt! 

    My younger sister's story was about identical to yours and, I believe, she is about 15 years out now.  Her only difference was that she chose not to do radiation, had a local recurrence 6 years out, then had surgery and radiation anyway...lol.  She was also then put on femara and has stayed on it since (by then she was postmenopausal).

    I was Stage 3 and just 33 when I was diagnosed (about 7-9 years before her dx).  My path has been rockier.  I had an 18 year remission and then have been Stage 4 for 8 years, but doing fairly well now.  I will be a 27 year survivor in Feb 2014!

    I am sorry that you had to join the MB because you have cancer, but know that you are welcome and that many here will try their hardest to help.  Hugs and prayers! 

    P.S. Our daughter, Katherine, was 4 when I was diagnosed and I used to pray that I would just make it to her 8th birthday.  She is 31 now and getting married in April.

  • GMcD
    GMcD Member Posts: 134

    You ARE going to kick some

    You ARE going to kick some butt! 

    My younger sister's story was about identical to yours and, I believe, she is about 15 years out now.  Her only difference was that she chose not to do radiation, had a local recurrence 6 years out, then had surgery and radiation anyway...lol.  She was also then put on femara and has stayed on it since (by then she was postmenopausal).

    I was Stage 3 and just 33 when I was diagnosed (about 7-9 years before her dx).  My path has been rockier.  I had an 18 year remission and then have been Stage 4 for 8 years, but doing fairly well now.  I will be a 27 year survivor in Feb 2014!

    I am sorry that you had to join the MB because you have cancer, but know that you are welcome and that many here will try their hardest to help.  Hugs and prayers! 

    P.S. Our daughter, Katherine, was 4 when I was diagnosed and I used to pray that I would just make it to her 8th birthday.  She is 31 now and getting married in April.

    Hi.  My experience is very

    Hi.  My experience is very similar to Suzanne's.  I am almost 4 yrs out since diagnosis and still worry about recurrance but not as much as I have in the past.  The best advice is the drink, drink, drink.  This board was very valuable to me during teatment as there are a lot of things that come up and there is always an answer for the question.  You can do this!!!

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    Hello and welcome..
    I did not

    Hello and welcome..

    I did not have chemo so I do  not have any advice-just good thoughts heading your way with some pixie dust!

    Denise

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member

    Hello and welcome..
    I did not

    Hello and welcome..

    I did not have chemo so I do  not have any advice-just good thoughts heading your way with some pixie dust!

    Denise

    Diagnosis pretty similar here

    Welcome, Loriell -

    I was 40 when I was diagnosed 4 1/2 years ago with invasive ductal carcinoma in one breast and invasive lobular in the other.  ER+/PR+, Her2-, BRCA-.

    I had bilateral lumpectomies -- surprisingly (at least to my surgeon) all my sentinel lymph nodes were negative, and I was staged at Stage 1.  I chose to do chemo anyway -- 4 rounds of TC, then 33 radiation treatments.  I've been on Tamoxifen for 4 years.  Other than a scare a couple of months ago that required a biopsy which turned out negative, I'm doing very well.

    A couple of large, well-respected studies have come out in the last year that shows Tamoxifen should now be taken for 10 years, not the traditional 5 years -- many doctors are now recommending that.  Every person's health situation is different, and I'm sure there are differences of opinion among doctors -- just be prepared for that if your doctor changes his/her recommendation once you get to that point.

    Traci

  • Loriell
    Loriell Member Posts: 13
    lintx said:

    Team Pink!!

     

    I can tell you're a funny girl!  Love thatSmile  I'm a yr out and had IDC, too.  Mine stayed in the duct w/no node involvement.  I had a bilateral but no chemo or rads and take Tamoxifen being 98% estrogen positive.  I was stage 1.  I had Diep flap reconstruction.  I'm not to the point Suzanne is, regarding not fearing recurrence.  Wish I could be.  Maybe someday! I'm wishing you the best during treatment and truly can feel your great attitude coming through the post!  Keep in touch w/us.  Hugs, Linda 

    Hello Linda

    Hello Linda, 

    I am getting teary eyed reading all my replyes this morning and feeling very hopeful reading your posts.

    thnak you for your reply! how is the tamoxifen treating you? Did you have severe side effects?

     

  • Loriell
    Loriell Member Posts: 13

    You ARE going to kick some

    You ARE going to kick some butt! 

    My younger sister's story was about identical to yours and, I believe, she is about 15 years out now.  Her only difference was that she chose not to do radiation, had a local recurrence 6 years out, then had surgery and radiation anyway...lol.  She was also then put on femara and has stayed on it since (by then she was postmenopausal).

    I was Stage 3 and just 33 when I was diagnosed (about 7-9 years before her dx).  My path has been rockier.  I had an 18 year remission and then have been Stage 4 for 8 years, but doing fairly well now.  I will be a 27 year survivor in Feb 2014!

    I am sorry that you had to join the MB because you have cancer, but know that you are welcome and that many here will try their hardest to help.  Hugs and prayers! 

    P.S. Our daughter, Katherine, was 4 when I was diagnosed and I used to pray that I would just make it to her 8th birthday.  She is 31 now and getting married in April.

    Hello Cynthia

    Hi Cynthia,

    I am teary eyed reading all my responses today. It is tears of joy that there are so many wonderful survival stories to share.

    I am feeling very hopeful. I say the same prayers everyday that I can stay with my boys and see them grow up! 

    thanks again for your reply and I am here for anyone that wants to talk.

  • Loriell
    Loriell Member Posts: 13

    Hello and welcome..
    I did not

    Hello and welcome..

    I did not have chemo so I do  not have any advice-just good thoughts heading your way with some pixie dust!

    Denise

    Thanks

    Thanks for the pixie dust Denise!! :-) 

  • Loriell
    Loriell Member Posts: 13
    TraciInLA said:

    Diagnosis pretty similar here

    Welcome, Loriell -

    I was 40 when I was diagnosed 4 1/2 years ago with invasive ductal carcinoma in one breast and invasive lobular in the other.  ER+/PR+, Her2-, BRCA-.

    I had bilateral lumpectomies -- surprisingly (at least to my surgeon) all my sentinel lymph nodes were negative, and I was staged at Stage 1.  I chose to do chemo anyway -- 4 rounds of TC, then 33 radiation treatments.  I've been on Tamoxifen for 4 years.  Other than a scare a couple of months ago that required a biopsy which turned out negative, I'm doing very well.

    A couple of large, well-respected studies have come out in the last year that shows Tamoxifen should now be taken for 10 years, not the traditional 5 years -- many doctors are now recommending that.  Every person's health situation is different, and I'm sure there are differences of opinion among doctors -- just be prepared for that if your doctor changes his/her recommendation once you get to that point.

    Traci

    Hello Traci

    Hello Traci,

    Indeed our stories sound similar . How did you do on chemo? Sounds like we will be using the same drugs. I will also do about 33 rounds of radiation. How well did you do with that? I will have reconstruction after my treatments and now have expanders in. Although my number one priority is getting rid of the cancer I'm hoping the radiation doesn't have a negative impact on the reconstruction progress.

     

    I was staged at stage 2 , although I have no lymph node involvment my cancer was sized at 3. 

     

    Thank you you for your reply, seems like a great board!

     

  • lintx
    lintx Member Posts: 697
    Loriell said:

    Hello Linda

    Hello Linda, 

    I am getting teary eyed reading all my replyes this morning and feeling very hopeful reading your posts.

    thnak you for your reply! how is the tamoxifen treating you? Did you have severe side effects?

     

    I'm going to redirect you to another post

     

    On Nov 24, Suzanne posted Tamoxifen vs Arimidex.  A few of us responded, and you can read what was said about side effects.  Everyone is different though and will experience nothing to everything in between!  Linda

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    Loriell said:

    Thanks

    Thanks for the pixie dust Denise!! :-) 

    Welcome .. Miss Loriell

    So nice to meet you --    I will be sending you cyber hugs - strength, and prayers.

    Strength, Courage and HOPE for a Cure.

     

    Vicki Sam

  • Jennifer1961
    Jennifer1961 Member Posts: 137
    Hi.  I also had stage 2a,

    Hi.  I also had stage 2a, estrogen +, Her2-.  I had a lumpectomy, then 6 rounds of TAC.  Since my tumor had very thin (but clear) margins my doc recommended mastectomy.  I opted for bilateral with reconstruction.  It's been 3 years since I completed treatment and am going strong.  I was 48 when diagnosed, three kids 5, 9 and 11.  So hard to go through this stuff when your kids are so little.  Keep the faith.  Before you know it it will be a distant memory.  XO

  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188

    Hi.  I also had stage 2a,

    Hi.  I also had stage 2a, estrogen +, Her2-.  I had a lumpectomy, then 6 rounds of TAC.  Since my tumor had very thin (but clear) margins my doc recommended mastectomy.  I opted for bilateral with reconstruction.  It's been 3 years since I completed treatment and am going strong.  I was 48 when diagnosed, three kids 5, 9 and 11.  So hard to go through this stuff when your kids are so little.  Keep the faith.  Before you know it it will be a distant memory.  XO

    Hi Loriell

    I'm new to this journey, too. I'm invasive breast cancer too, but we don't yet know if it's ductal or lobular. I do have lymph node involvement, so I'm either a stage II or III. I have a PET scan on Monday to check the extent of metastasis. We do know I'm ER+\PR+ but HER-. Because of my mets, I'm doing everything in reverse order from you: chemo first, then radiation, then surgery.

    I'll keep you posted on how the chemo goes! I meet with my oncologist on Friday.

  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Welcome, Loriell

    Glad you found us - though sorry for the reason. We're all here to support & encourage each other.

    You've already come far along your journey. My circumstances were quite different than yours.

    Sending best wishes for chemo to go well, with minimal side effects & maximum effectiveness. Best advice I can offer, in sum - follow all instructions & recommendations provided by your doctor & nurses. And inform them, honestly, of how you're feeling & what's happening. There are many options to counter/minimize side effects.

    The Board is here for you, each & every day, 24/7. And everyone is free to come & go as they desire, without obligation.

    Kind regards, Susan 

  • Loriell
    Loriell Member Posts: 13

    Welcome, Loriell

    Glad you found us - though sorry for the reason. We're all here to support & encourage each other.

    You've already come far along your journey. My circumstances were quite different than yours.

    Sending best wishes for chemo to go well, with minimal side effects & maximum effectiveness. Best advice I can offer, in sum - follow all instructions & recommendations provided by your doctor & nurses. And inform them, honestly, of how you're feeling & what's happening. There are many options to counter/minimize side effects.

    The Board is here for you, each & every day, 24/7. And everyone is free to come & go as they desire, without obligation.

    Kind regards, Susan 

    Thanks

    Laughing

    Thanks Christmas Girl....just wanted to say hello and thank you for your response and well wishes. 

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    Same extact dx here

    Hi and welcome!

    I am sorry you had to join us.

    I was dx at the age of 32 with the same cancer you had. I had stage 2A, estrogen +, HER2 -, BRCA neg. and vascular invasion too! (with no nodes involved.) We are very similar.

    I did ACT (8 weeks, every other week). There is so much to know but the first thing to always remember is WE ARE ALL DIFFERENT. Things have changed so you might not get any side effects. I personally got the most side effects from the nuelesta shot! Will you be getting one after each treatment? That was quite the ride, for 2-3 days. But very doable!

    First thing first:

    -chew on ice during your infusion to prevent mough sores

    -try to eat 6-8 small meals a day (and I mean really small, like a fruit, a salad)

    - DRINK lots of water! (at least 8 glasses daily, to wash out all those chemicals

    -keep stool softerners handy (this was my worst side effect. And it was really bad.)

    -WASH everything you eat! Well. Try eating only cooked things. If eating raw food, make sure you wash.

    -Have someone clean the bathtub for you so you get no bacteria in your nails or on your feet.

    -Don't be around sick people (try weairing a doctor mask if you are)

    -Eat a lot of green veggies and fruit. Foods with strong colors.

    -SLEEP. Let your body rest at all time.

    -If you experience anything abnormal, call your DR. Don't wait.

    -Don't take any meds without talking to your Dr. first. Some meds interfere with treatment (and even foods! like grapefruit.)

    -Surround yourself with loving people. EXCLUDE all negativity.

    -Have Faith. Believe you will be Fine.

    you can send me a PM if you would like to chat.

    Good luck with everything!!

     

    XOXOX

  • Doe1504
    Doe1504 Member Posts: 94

    Same extact dx here

    Hi and welcome!

    I am sorry you had to join us.

    I was dx at the age of 32 with the same cancer you had. I had stage 2A, estrogen +, HER2 -, BRCA neg. and vascular invasion too! (with no nodes involved.) We are very similar.

    I did ACT (8 weeks, every other week). There is so much to know but the first thing to always remember is WE ARE ALL DIFFERENT. Things have changed so you might not get any side effects. I personally got the most side effects from the nuelesta shot! Will you be getting one after each treatment? That was quite the ride, for 2-3 days. But very doable!

    First thing first:

    -chew on ice during your infusion to prevent mough sores

    -try to eat 6-8 small meals a day (and I mean really small, like a fruit, a salad)

    - DRINK lots of water! (at least 8 glasses daily, to wash out all those chemicals

    -keep stool softerners handy (this was my worst side effect. And it was really bad.)

    -WASH everything you eat! Well. Try eating only cooked things. If eating raw food, make sure you wash.

    -Have someone clean the bathtub for you so you get no bacteria in your nails or on your feet.

    -Don't be around sick people (try weairing a doctor mask if you are)

    -Eat a lot of green veggies and fruit. Foods with strong colors.

    -SLEEP. Let your body rest at all time.

    -If you experience anything abnormal, call your DR. Don't wait.

    -Don't take any meds without talking to your Dr. first. Some meds interfere with treatment (and even foods! like grapefruit.)

    -Surround yourself with loving people. EXCLUDE all negativity.

    -Have Faith. Believe you will be Fine.

    you can send me a PM if you would like to chat.

    Good luck with everything!!

     

    XOXOX

    I had invasive Lobular Carcinoma

    I was diagnosed on 4-12-13, I had 4 tumors in my rt breast. I had a bi lateral mastectomy May 15  with expanders put in and started chemo on June 27. I was er+ and PR+ HER2- and had no lymph node involvement. i had 4 rounds of adrimycin( red devil) and cytoxin then just yesterday finished my 12 rounds of Taxol. I have my silicone implants put in on Jan 8. I was offered radation but chose not to. I will be on tamoxifen for at least a year then may be changed to another drug. I turned 50 in Feb, 2 mos. before my dagnosis.

    Chemo is tough but can be done! Hang in there :)

    Good luck, Dolores